Post Soundtrack: Lost by Coldplay
I have hit another Lupus milestone, and as is usual, I am entirely at a loss about how to feel about it. As is the case with almost everything when dealing with Lupus, this has a good side and a bad side. Mixed blessings are becoming the norm.
At my last appointment, I took in the form for applying for a handicap placard for the car. I had filled out my half, and was feeling uncertain about how my rheumy would respond. I hadn't asked him about it before, I simply brought it in this time.
Something I am learning about him is that he doesn't usually bring things up until I bring them up myself. He clearly felt strongly about using sunscreen, but didn't address it until I asked about it. I imagine he has plenty of experience with balky patients like myself who might not be emotionally ready for the kind of changes that need to be made. Beating a reluctant patient over the head with what he or she needs to change certainly won't help them listen to him when it's vitally important, so I respect his means of dealing with it.
Apparently this placard was one of those issues.
The moment he saw the form, he practically snatched it out of my hand and immediately began scribbling down the required info. I was hesitant and curious to see what he marked me as... would it be permanent? Sure enough, it was. He didn't talk about it (we were discussing something else while he did this), just treated it as fact and given.
I was a little daunted after going home, but I kept the paper where I could see it. I knew that I would procrastinate mailing it in if I allowed myself the room to do so. But it was important to get done. There are several times now when I really could have used a handicap parking spot, when I am creaky or outright painful, but still needed to be involved in going to the store. So I knew it was for my own good to send it in.
Thankfully I was successful in getting a grip on myself. I carefully sealed it in an envelope, addressed it properly, and sent it off to the post office with hubby after putting a stamp on it. I then put the whole matter to the back of my mind, because I knew very well I would have to stare it in the face once the placards actually arrived.
Today was that day.
So here I sit, with the two placards and their accompanying verification letters conspicuously to my left. I have been looking forward to this, truthfully, but also dreading it. It is a much needed help for me, but it also is a label I'm not certain I feel ready for.
It seems like, growing up, there were two ways to define someone as handicapped. The first was the obvious wheelchair or prosthetic. The second was to have that license plate or placard that declared that this person got special privileges in the parking lot. Both seemed like very solid, official sorts of ways to define who was and was not handicapped. Someone on crutches? Not necessarily handicapped. A scooter? Same thing. But if they had that placard, that sealed the deal.
Am I ready to see myself as handicapped? Disabled? And am I ready to accept that this is a lifelong thing? I'm not really sure I am.
It's hard to see one's self in this sort of light. Even if I groan going up and down the stairs... even if I hobble down the grocery store aisle... even if I can predict when the next thunderstorm is going to strike because of stabbing pain in my hip/SI joint... to have these placards is to declare publicly and openly that I have greater physical limitations than the average person, and that those limitations aren't likely to ever go away. Oh, if I'm blessed they will fade, at least for a time, but the threat of pain and disability will never cease.
It's one thing to admit privately to myself that this is so. It's another to proclaim it and claim certain privileges as my right. I know it's important to be my own best advocate, but I'm not comfortable putting myself forward in normal situations. This... this is a whole new ball of wax.
Once I settle into the idea, once I get used to the concept, and once I start finding how thankful I am for the help it provides, I'll be fine with it all. It will be yet another change that simply becomes part of normal daily life. But right at this moment, I'm reeling from the necessity and enormity of it. Another major thing I have to accept and move ahead with. Another phase of my life left behind forever.
Even so, I refuse to lose myself in the midst of all this change. I am still me. Having this placard doesn't change who I am. It merely changes my circumstances, and for the better. Pardon my tears as I continue to remind myself that this is a good, positive thing. I'll get over it in time.
Monday, August 25, 2014
Tuesday, August 19, 2014
Hanging On
Post Soundtrack: Without You by ODESZA
I have recently been thinking about and exploring methods to help me deal with and come to terms with my pain level, to try and help myself overcome it and move on with my life. I've peeked at music therapy (there is very little about using it for pain management, though I subconsciously do this anyway. I might discuss this another time), and today the Lupus Foundation's newsletter had an article about using art therapy. Being artistic, I was intrigued and went to read about it.
However, as I began to read, something struck me. It was a sort of outrage, an emotional lashing out at this ridiculous disease. The interviewed artist spoke about how it helps her deal with the pain, reminds her that it will pass, that tomorrow may be better. May be. This was the origin point of my sudden upheaval of frustration and anger.
I know Lupus isn't the only disease this is true of, but it is the only one that I'm personally familiar with, so please don't take my statements to be in exclusion of other types of illnesses.
It is HORRIBLE that we have to put up with this pain, this stress, this trap of a disease at ALL! It isn't fair that we have to find ways to cope, because we know we'll never escape it. It's terrible that we have to search high and low to find something, anything that will help us to get through each day... each hour... sometimes each minute.
How are we expected to endure this? It isn't right, and it isn't okay. It's not! Not at ALL okay! Sometimes, like now, I rail against the calm manner in which we are expected, suggested, coaxed to deal with Lupus. I want to rage against it! I want to scream into the storm that it cannot have me, that I won't let it!
I want to turn my mind from it and do art for the sake of art, not because I have roiling emotions bottled up inside because of all Lupus puts me through. I hate that it colors everything. I hate that I have to worry about whether I'll be able to get all these little projects for my son's birthday party done in time. No one else can do these projects. I am the only one who has the art skills to pull them off, the only one with the imagination to see what could be and pursue it. So it is all on me... and stupid Lupus.
I have to live with all the secret fears that come with having Lupus. I've been dwelling on posting about those as well, but I haven't because they are unpleasant and tap into the darker parts, the bits I don't want to have to deal with but am forced to anyway.
We are approaching the start of the absolute busiest part of our year, which always begins with planning son's birthday and getting him ready to start school. From that point (this point) on, it all piles on, one thing on another, for the next month. There is always more than we plan for, more to deal with than we bargained for. And that's fine, really. Except for this new thing in my life called Lupus. I feel like it is looming over my shoudler, snickering wickedly, waiting for the most difficult and heart-wrenching moment to strike. I'm terrified it will ruin my enjoyment of my son's big day. I'm agonized over the possibility I won't be able to go with on his first day of high school. I'm in knots that it will make it impossible for me to be involved with the various social things coming up that I am expected to attend or host, and that I very much look forward to.
I don't want this. I don't want to be torn apart by dread, by worry, by fury at my helplessness against Lupus and what it does to me. That is exactly how I feel right now... completely and utterly helpless. No amount of music therapy or art therapy or even chemo drugs make me any less helpless to the ravages this disease can exact on me. It's all an illusion, a carefully built and reinforced image that it will be okay because of... insert coping mechanism here.
This is not a negation of faith. I have faith things will work out. The difficult truth, though, is that I am not guarenteed it will work out like I would like it to. Nor that the journey there will be at all comfortable. It is the smaller things that I am fretting at now, the things I cling to because I am afraid they will be taken from me.
What's the solution? The resolution of my fears? I have none. That's what the coping mechanisms are for, of course. Finding ways to pull yourself up by the boot straps and keep on going. It isn't even the mechanisms that I am furious with or resentful of. It is the necessity of them that I resent. It is the undeniable usefulness of them that chafes against me sometimes. But down deep, the real true enemy here is fear. Fear of the unknown, fear of the future, fear of what I can't control, Lupus being primary among the many candidates, with time and chance another.
So I will hang on. I will scream into the storm, but I will hang on. I would rather be here, fighting for the privilege of attending (and being able to accomplish) my son's birthday than hiding in some deep, dark place inside myself, waiting for the inevitable to come. I will hang on, and I hope you will hang on too. Sometimes that's all we can do.
I have recently been thinking about and exploring methods to help me deal with and come to terms with my pain level, to try and help myself overcome it and move on with my life. I've peeked at music therapy (there is very little about using it for pain management, though I subconsciously do this anyway. I might discuss this another time), and today the Lupus Foundation's newsletter had an article about using art therapy. Being artistic, I was intrigued and went to read about it.
However, as I began to read, something struck me. It was a sort of outrage, an emotional lashing out at this ridiculous disease. The interviewed artist spoke about how it helps her deal with the pain, reminds her that it will pass, that tomorrow may be better. May be. This was the origin point of my sudden upheaval of frustration and anger.
I know Lupus isn't the only disease this is true of, but it is the only one that I'm personally familiar with, so please don't take my statements to be in exclusion of other types of illnesses.
It is HORRIBLE that we have to put up with this pain, this stress, this trap of a disease at ALL! It isn't fair that we have to find ways to cope, because we know we'll never escape it. It's terrible that we have to search high and low to find something, anything that will help us to get through each day... each hour... sometimes each minute.
How are we expected to endure this? It isn't right, and it isn't okay. It's not! Not at ALL okay! Sometimes, like now, I rail against the calm manner in which we are expected, suggested, coaxed to deal with Lupus. I want to rage against it! I want to scream into the storm that it cannot have me, that I won't let it!
I want to turn my mind from it and do art for the sake of art, not because I have roiling emotions bottled up inside because of all Lupus puts me through. I hate that it colors everything. I hate that I have to worry about whether I'll be able to get all these little projects for my son's birthday party done in time. No one else can do these projects. I am the only one who has the art skills to pull them off, the only one with the imagination to see what could be and pursue it. So it is all on me... and stupid Lupus.
I have to live with all the secret fears that come with having Lupus. I've been dwelling on posting about those as well, but I haven't because they are unpleasant and tap into the darker parts, the bits I don't want to have to deal with but am forced to anyway.
We are approaching the start of the absolute busiest part of our year, which always begins with planning son's birthday and getting him ready to start school. From that point (this point) on, it all piles on, one thing on another, for the next month. There is always more than we plan for, more to deal with than we bargained for. And that's fine, really. Except for this new thing in my life called Lupus. I feel like it is looming over my shoudler, snickering wickedly, waiting for the most difficult and heart-wrenching moment to strike. I'm terrified it will ruin my enjoyment of my son's big day. I'm agonized over the possibility I won't be able to go with on his first day of high school. I'm in knots that it will make it impossible for me to be involved with the various social things coming up that I am expected to attend or host, and that I very much look forward to.
I don't want this. I don't want to be torn apart by dread, by worry, by fury at my helplessness against Lupus and what it does to me. That is exactly how I feel right now... completely and utterly helpless. No amount of music therapy or art therapy or even chemo drugs make me any less helpless to the ravages this disease can exact on me. It's all an illusion, a carefully built and reinforced image that it will be okay because of... insert coping mechanism here.
This is not a negation of faith. I have faith things will work out. The difficult truth, though, is that I am not guarenteed it will work out like I would like it to. Nor that the journey there will be at all comfortable. It is the smaller things that I am fretting at now, the things I cling to because I am afraid they will be taken from me.
What's the solution? The resolution of my fears? I have none. That's what the coping mechanisms are for, of course. Finding ways to pull yourself up by the boot straps and keep on going. It isn't even the mechanisms that I am furious with or resentful of. It is the necessity of them that I resent. It is the undeniable usefulness of them that chafes against me sometimes. But down deep, the real true enemy here is fear. Fear of the unknown, fear of the future, fear of what I can't control, Lupus being primary among the many candidates, with time and chance another.
So I will hang on. I will scream into the storm, but I will hang on. I would rather be here, fighting for the privilege of attending (and being able to accomplish) my son's birthday than hiding in some deep, dark place inside myself, waiting for the inevitable to come. I will hang on, and I hope you will hang on too. Sometimes that's all we can do.
Wednesday, July 30, 2014
Comfort in Death
Post Soundtrack: Isolate by Moby
Colossians 3:2-3 - "Set your mind on things that are above, not on things that are on earth. For you have died, and your life is hidden with Christ in God."
It can be a real temptation to focus on my life here, on my daily struggles, on my daily pain. In some ways, it is nearly impossible to not have my thoughts dwell on my daily condition. This is why it is such a strong temptation to put all my effort, worry, and concern in the here and now.
However, this verse clearly speaks directly to that temptation of mine. As important and pressing as my pain and suffering may be, they are not of the utmost importance. My spiritual life far surpasses my physical life in urgency and importance. Even beyond this obvious application, I want to point out to myself that this verse says I have already died, a reminder of my death and burial in Christ through baptism, as is spoken of in Romans 6:3-4. I do flinch from dying of Lupus, but in truth the more important death has already happened. I chose my death, that of separating myself from sin, and that death carries so much more impact than any death that Lupus can dole out.
Further, this verse is a comfort, for it reassures me that the life I gained through my choice is safe in God's hands. Lupus cannot touch my eternal life, cannot ever take it from me. God holds that essence beyond the reach of pain, outside the realm of earthly fear. I never have to fret or worry that, among the other things Lupus has taken from me, I might lose my eternal comfort as well. God has hidden it away from the contamination of physical disease, and not even my emotional anguish can lessen or taint that final reward. "For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us," Romans 8:18.
All God asks of me in return is that I follow his Word, that I obey his commands. I need to stop to consider exactly what extremes I would be willing to go to in order to be certain of comfort and the ending of pain. God has not asked those extremes of me, though he could have. As it says in 1 John 5:3, "For this is the love of God, that we keep his commandments. And his commandments are not burdensome." This is why I unflinchingly and eagerly strive to do his will. How could I not, when his kindness and mercy are so evident to me as I face Lupus?
Colossians 3:2-3 - "Set your mind on things that are above, not on things that are on earth. For you have died, and your life is hidden with Christ in God."
It can be a real temptation to focus on my life here, on my daily struggles, on my daily pain. In some ways, it is nearly impossible to not have my thoughts dwell on my daily condition. This is why it is such a strong temptation to put all my effort, worry, and concern in the here and now.
However, this verse clearly speaks directly to that temptation of mine. As important and pressing as my pain and suffering may be, they are not of the utmost importance. My spiritual life far surpasses my physical life in urgency and importance. Even beyond this obvious application, I want to point out to myself that this verse says I have already died, a reminder of my death and burial in Christ through baptism, as is spoken of in Romans 6:3-4. I do flinch from dying of Lupus, but in truth the more important death has already happened. I chose my death, that of separating myself from sin, and that death carries so much more impact than any death that Lupus can dole out.
Further, this verse is a comfort, for it reassures me that the life I gained through my choice is safe in God's hands. Lupus cannot touch my eternal life, cannot ever take it from me. God holds that essence beyond the reach of pain, outside the realm of earthly fear. I never have to fret or worry that, among the other things Lupus has taken from me, I might lose my eternal comfort as well. God has hidden it away from the contamination of physical disease, and not even my emotional anguish can lessen or taint that final reward. "For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us," Romans 8:18.
All God asks of me in return is that I follow his Word, that I obey his commands. I need to stop to consider exactly what extremes I would be willing to go to in order to be certain of comfort and the ending of pain. God has not asked those extremes of me, though he could have. As it says in 1 John 5:3, "For this is the love of God, that we keep his commandments. And his commandments are not burdensome." This is why I unflinchingly and eagerly strive to do his will. How could I not, when his kindness and mercy are so evident to me as I face Lupus?
Friday, July 11, 2014
Unwrapping Our Gifts
Post Soundtrack: Edge of the Ocean by Ivy
I was led today on an internet journey that ended up with me reading a blog post about an old dog. It was very sweet and very positive, speaking of leaving behind the bad things in our past and being in the now while looking on to our future. But something he said really struck a chord with me.
"Gifts are everywhere, even if they are wrapped in mystery and challenge, in scars and fear." - Tom Ryan
This is very true. This can be applied to almost anything. But mostly, I find it applies well to how I need to view life through Lupus. I say 'through' Lupus because I do feel like I must look through my condition in order to see how to get on about the things I want to do. Everything is colored by the lens of Lupus. That may sound defeatist in a way, but it really isn't.
I've recently come to accept and come to terms with my diagnosis. Took me a while, but I understand now why that is. I needed to prove to myself that I could do this. That while Lupus clearly was going to change my life, it didn't have to change me. Do I do all the same things I used to? Nope. Do I aim for all the same things I used to? Not always. But can I go ahead with my life anyway, despite the changes Lupus has brought? You bet! So I had to live life, find my way through while still making allowances for these changes. I needed to show myself that it wasn't the end of the world, that I could do it. And I have. I may not always LIKE these changes, but I can still cope with them and still be ME.
For myself, that is what is at the root of Mr. Ryan's statement. That despite whatever daunting challenges, fearful moments, mysterious obstacles, or scarring events happen... there is still good in the world, in my life, in me! I am still worth something, I am still valid as an individual. In fact, I might have a jump on the world in this aspect, because my life gives me extra reasons to look for and unwrap these hidden gifts, these blessings that are often overlooked or undervalued.
It can be so easy to be pulled under by the sheer, daunting weight of unknowns and negatives that come with a Lupus diagnosis. There is a reason Lupus patients are prone to depression. But I say we fight for our happiness. That we look for and treasure these gifts, and share them with each other, to help lift and brighten someone else's day as well. Let's try harder to do that. I'm certain that doing so will ease our hearts and bring smiles to faces that need them.
Thursday, June 12, 2014
A Few Answers
Post Soundtrack: Count On Me by Mat Kearney
It has occurred to me that perhaps it would be of some use to share the other questions I asked my rheumatologist last visit and what his answers were. Please keep in mind, these were answers directed specifically to me by my own doctor. I highly advocate asking your own doctor if you have questions of your own, or want to know what your doctor thinks of these issues. This is meant to be helpful information, not advice on what to or not to do.
Just as a recap, I'll include my first question to him.
Q. Should I be concerned about sunlight? To what extent?
A. Yes. You should be wearing SPF 70 or higher sunscreen, including under your clothes. You should wear a large, floppy hat anytime you are outside. Avoid going out between 2 and 5 p.m. Stay out of the sunshine as much as you can.
Relevant questions I did not ask that I will be asking next time:
- Should we tint our car windows, and if so, what percentage? (There is a form I'd need him to fill out if it's above 35%.)
- The sunscreen bottle says to reapply after two hours. Do I really need to put it on under all my clothes every two hours?
- Is it possible to spend all day at a theme park or similar situation? Are there extra precautions I could take?
- Would using a laundry product that adds sun protection to my clothes be a good thing? Would it cut down on how often I would have to do all-over sunscreen?
- How would UPF clothing (50+) affect how often I needed to do all-over sunscreen?
Q. Should I be taking vitamin D?
A. Usually I only prescribe vitamin D supplements when a patient has a lot of difficulty with exhaustion and (I've forgotten the other problem he cited, sorry!), as those are the things vitamin D is proven to help with. I don't mind if you take over-the-counter vitmain D if you prefer, though. I just generally don't prescribe it unless there is a need.
Relevant question I didn't ask:
- Is D2 or D3 better to take?
Q. I've been having ear aches lately. Are they related, and should I be worried about them?
A. While Lupus can cause inflammation in the ear, if it was related to your Lupus, it would not come and go. It is not likely to be involved with Lupus, so talk to your primary doctor about it.
Q. I've realized that recently I've been having migraines. I have read that some consider them related to Lupus, but others don't. Who should I talk to about them?
A. While some Lupus patients do have trouble with migraines and it does seem like it may be involved with Lupus, the problem is that it can't be treated or affected by all the typical medicines we treat Lupus with. Because of this, if you are having migraines, talk to your primary doctor about it.
Q. With my eye history as well as now having Lupus, should I be seeing an ophthalmologist?
A. Yes, at least once a year.
Q. How do you, my doctor, define a flare?
A. (He strugged.) However you define it. Whenever your symptoms get worse. If you think it's a flare, we'll call it a flare.
Questions I did not ask and probably should:
- How would you define remission?
- What should I do if I'm having a flare? Should I call you?
Q. I recently had the stomach flu. What should I do in a situation where I can't keep my medicines down?
A. The only medicine you have to make sure to keep down is prednisone. If you can't take the methotrexate after a day or two, just wait until the next week to take it. The rest you can wait and take when you feel better. If you are still throwing up and unable to keep your prednisone down after two days, go to the ER. You could be vomiting due to prednisone withdrawal. Be sure to tell the ER staff that you are prednisone dependent, because they will need to give it to you intravenously.
Overall, it was a very informative visit. I went prepared with these questions, and his answers all made sense to me. Forgive me for forgetting exactly what he said about vitamin D. He also highly approved of me keeping a journal of up and down days. I told him that I was having a hard time telling if I was having more up days or down days, and he replied that I was going back and forth a lot. (He used the gesture like scales tipping back and forth between your hands.) It was reassuring to hear him say that, because sometimes I feel like I'm crazy, and that things really aren't as bad as I make them out to be. His candid understanding of my state was a relief.
I highly recommend taking a pre-prepared list of questions with you to your appointments, especially if you are going months between them. Write them down as you think of them if you can, as I find that all my questions disappear the day of the appointment. (I get a little anxious and nervous.) Make sure your doctor knows you have questions that you want answered, so that you don't end up throwing them out as the doctor is heading out the door. The answers won't be as complete and clear to you if you surprise your doctor in the hallway with them! I also suggest writing down the answers if they are involved, have medicine/condition names that will be hard to remember, or if you usually find it difficult to recall what the doctor said later on.
It has occurred to me that perhaps it would be of some use to share the other questions I asked my rheumatologist last visit and what his answers were. Please keep in mind, these were answers directed specifically to me by my own doctor. I highly advocate asking your own doctor if you have questions of your own, or want to know what your doctor thinks of these issues. This is meant to be helpful information, not advice on what to or not to do.
Just as a recap, I'll include my first question to him.
Q. Should I be concerned about sunlight? To what extent?
A. Yes. You should be wearing SPF 70 or higher sunscreen, including under your clothes. You should wear a large, floppy hat anytime you are outside. Avoid going out between 2 and 5 p.m. Stay out of the sunshine as much as you can.
Relevant questions I did not ask that I will be asking next time:
- Should we tint our car windows, and if so, what percentage? (There is a form I'd need him to fill out if it's above 35%.)
- The sunscreen bottle says to reapply after two hours. Do I really need to put it on under all my clothes every two hours?
- Is it possible to spend all day at a theme park or similar situation? Are there extra precautions I could take?
- Would using a laundry product that adds sun protection to my clothes be a good thing? Would it cut down on how often I would have to do all-over sunscreen?
- How would UPF clothing (50+) affect how often I needed to do all-over sunscreen?
Q. Should I be taking vitamin D?
A. Usually I only prescribe vitamin D supplements when a patient has a lot of difficulty with exhaustion and (I've forgotten the other problem he cited, sorry!), as those are the things vitamin D is proven to help with. I don't mind if you take over-the-counter vitmain D if you prefer, though. I just generally don't prescribe it unless there is a need.
Relevant question I didn't ask:
- Is D2 or D3 better to take?
Q. I've been having ear aches lately. Are they related, and should I be worried about them?
A. While Lupus can cause inflammation in the ear, if it was related to your Lupus, it would not come and go. It is not likely to be involved with Lupus, so talk to your primary doctor about it.
Q. I've realized that recently I've been having migraines. I have read that some consider them related to Lupus, but others don't. Who should I talk to about them?
A. While some Lupus patients do have trouble with migraines and it does seem like it may be involved with Lupus, the problem is that it can't be treated or affected by all the typical medicines we treat Lupus with. Because of this, if you are having migraines, talk to your primary doctor about it.
Q. With my eye history as well as now having Lupus, should I be seeing an ophthalmologist?
A. Yes, at least once a year.
Q. How do you, my doctor, define a flare?
A. (He strugged.) However you define it. Whenever your symptoms get worse. If you think it's a flare, we'll call it a flare.
Questions I did not ask and probably should:
- How would you define remission?
- What should I do if I'm having a flare? Should I call you?
Q. I recently had the stomach flu. What should I do in a situation where I can't keep my medicines down?
A. The only medicine you have to make sure to keep down is prednisone. If you can't take the methotrexate after a day or two, just wait until the next week to take it. The rest you can wait and take when you feel better. If you are still throwing up and unable to keep your prednisone down after two days, go to the ER. You could be vomiting due to prednisone withdrawal. Be sure to tell the ER staff that you are prednisone dependent, because they will need to give it to you intravenously.
Overall, it was a very informative visit. I went prepared with these questions, and his answers all made sense to me. Forgive me for forgetting exactly what he said about vitamin D. He also highly approved of me keeping a journal of up and down days. I told him that I was having a hard time telling if I was having more up days or down days, and he replied that I was going back and forth a lot. (He used the gesture like scales tipping back and forth between your hands.) It was reassuring to hear him say that, because sometimes I feel like I'm crazy, and that things really aren't as bad as I make them out to be. His candid understanding of my state was a relief.
I highly recommend taking a pre-prepared list of questions with you to your appointments, especially if you are going months between them. Write them down as you think of them if you can, as I find that all my questions disappear the day of the appointment. (I get a little anxious and nervous.) Make sure your doctor knows you have questions that you want answered, so that you don't end up throwing them out as the doctor is heading out the door. The answers won't be as complete and clear to you if you surprise your doctor in the hallway with them! I also suggest writing down the answers if they are involved, have medicine/condition names that will be hard to remember, or if you usually find it difficult to recall what the doctor said later on.
Tuesday, May 27, 2014
Something New
Post Soundtrack: Hayling by FC Kahuna
It seems my life is full of new things lately. I'm adjusting to not going out into the sunlight without major prep beforehand. I did manage to go to a pool party yesterday, though of course I did not swim. Still, I refused to let my limitations dissuade me from participating in the social event. I gooped up with sunscreen like I'm supposed to, wore my nice new UPF 50 hat, and spent an hour and half on a shaded porch beside the pool. After that time, I went indoors and spent the rest of the time playing games. It's an odd adjustment, but one I'm determined to make.
But more notably, I am trying something completely new. I have been writing, in one form or another, pretty much all my life. It is something that comes naturally to me, though I do not profess to be any sort of expert at it. Even so, I do enjoy it, and have a certain amount of proficiency as well. An online friend asked me recently if I was doing anything with my time. I had to answer honestly that no, I wasn't. She pointed me to a site that one of her friends uses to make a little extra money on the side. So I went to take a look.
Something to keep in mind about me is that I have never been a career woman. Ever. I have had a total of four jobs in my life, three of those pre-marriage. I have tended a snow cone stand, briefly was a barista, and had a few years of being a yard duty on an elementary school playground. The more recent job was to babysit children while their mothers worked. I am quite solidly a housewife and stay-at-home-mom.
So when faced with this site that links freelancers with clients who have jobs they want done, I was both interested and intimidated. List my previous jobs? Somehow I doubt my dispensing snow cones at the age of sixteen was going to be of any help in getting writing jobs. Oh yes, and how about my shcooling? Well, I did at least graduate high school... and went to junior college for a bit. But nothing much there to show for it, so... ?! Man did I feel overwhelmed.
But I plugged on. Despite how foolish I felt setting up my profile, I did it anyway. I was supposed to take some skill tests to prove I was capable. Imagine my mortification upon recieving a "below average" score on my spelling test! It doesn't much help, though, that I tend to spell with my fingers... meaning that I prefer to type or write out a word to assess if it is spelled properly. Guess I've lost my touch at telling by sight, but then again, my sight is really not very good at all. It was yet another blow to my confidence.
I was so uncertain of myself that I had a long talk with hubby about it. He is a wonderful and very supportive man, but also isn't afraid to tell me when he disagrees with me. (I can't tell you how reassuring and helpful that is!) I knew already that the core of my problem was self-confidence. I lack it. I have no faith in myself or my abilities when pressed. However, I felt instinctively that I was capable of doing at least some of these writing jobs. I just was too scared of failure to jump in. He prodded me to go ahead and try, to brush up on my skills and do it anyway. I agreed, but was frankly terrified.
Timid I might be, but I also am stubborn. So once I made up my mind to make an honest try at being a freelance writer, I gritted my teeth and got more serious about it. I took a couple more skills tests, did well at them, and scanned the jobs. Lo and behold, I finally found one I was pretty sure I was capable of. Something simple and straightforward. It was to create 100 inspirational sayings. So I took a very deep breath, held it, and plunged in.
I was proud of my little cover letter, because I managed to convince myself not to run myself down, ask for allowances, or downplay my skills. I kept it firm, positive, and calm, at least on the written page. In real life, I was a twitching, squirrely mess. This became mixed with a surge of excitement when I was contacted in return, and carried on a text interview. It took another surge of courage to invent a sample saying so the client could 'judge my style'. (It took another check with hubby that what I came up with was worthy of sending.. I really should have believed in myself to begin with, but it's sooo haaard!)
Anyway, it resulted in my being asked to do the job. Which I have, in three days. No idea if that's reasonable or not, but guess what? I'm doing this for myself, not on someone else's time, unless I agree to do so. I have finished it and turned it in. There's just one problem now... I have no idea whether I'll really get paid or not. It's entirely possible, due to how this was set up, that she can blow me off even though she received the finished project. But oh well, such is life. It was for a measly fifteen bucks. Besides that, for me the biggest up-side to all this is that I did it! Nerves and all, I am overcoming and making something new of myself. That, I think, is worth celebrating.
Now if only I could find another job to apply for that I feel comfortable with!
It seems my life is full of new things lately. I'm adjusting to not going out into the sunlight without major prep beforehand. I did manage to go to a pool party yesterday, though of course I did not swim. Still, I refused to let my limitations dissuade me from participating in the social event. I gooped up with sunscreen like I'm supposed to, wore my nice new UPF 50 hat, and spent an hour and half on a shaded porch beside the pool. After that time, I went indoors and spent the rest of the time playing games. It's an odd adjustment, but one I'm determined to make.
But more notably, I am trying something completely new. I have been writing, in one form or another, pretty much all my life. It is something that comes naturally to me, though I do not profess to be any sort of expert at it. Even so, I do enjoy it, and have a certain amount of proficiency as well. An online friend asked me recently if I was doing anything with my time. I had to answer honestly that no, I wasn't. She pointed me to a site that one of her friends uses to make a little extra money on the side. So I went to take a look.
Something to keep in mind about me is that I have never been a career woman. Ever. I have had a total of four jobs in my life, three of those pre-marriage. I have tended a snow cone stand, briefly was a barista, and had a few years of being a yard duty on an elementary school playground. The more recent job was to babysit children while their mothers worked. I am quite solidly a housewife and stay-at-home-mom.
So when faced with this site that links freelancers with clients who have jobs they want done, I was both interested and intimidated. List my previous jobs? Somehow I doubt my dispensing snow cones at the age of sixteen was going to be of any help in getting writing jobs. Oh yes, and how about my shcooling? Well, I did at least graduate high school... and went to junior college for a bit. But nothing much there to show for it, so... ?! Man did I feel overwhelmed.
But I plugged on. Despite how foolish I felt setting up my profile, I did it anyway. I was supposed to take some skill tests to prove I was capable. Imagine my mortification upon recieving a "below average" score on my spelling test! It doesn't much help, though, that I tend to spell with my fingers... meaning that I prefer to type or write out a word to assess if it is spelled properly. Guess I've lost my touch at telling by sight, but then again, my sight is really not very good at all. It was yet another blow to my confidence.
I was so uncertain of myself that I had a long talk with hubby about it. He is a wonderful and very supportive man, but also isn't afraid to tell me when he disagrees with me. (I can't tell you how reassuring and helpful that is!) I knew already that the core of my problem was self-confidence. I lack it. I have no faith in myself or my abilities when pressed. However, I felt instinctively that I was capable of doing at least some of these writing jobs. I just was too scared of failure to jump in. He prodded me to go ahead and try, to brush up on my skills and do it anyway. I agreed, but was frankly terrified.
Timid I might be, but I also am stubborn. So once I made up my mind to make an honest try at being a freelance writer, I gritted my teeth and got more serious about it. I took a couple more skills tests, did well at them, and scanned the jobs. Lo and behold, I finally found one I was pretty sure I was capable of. Something simple and straightforward. It was to create 100 inspirational sayings. So I took a very deep breath, held it, and plunged in.
I was proud of my little cover letter, because I managed to convince myself not to run myself down, ask for allowances, or downplay my skills. I kept it firm, positive, and calm, at least on the written page. In real life, I was a twitching, squirrely mess. This became mixed with a surge of excitement when I was contacted in return, and carried on a text interview. It took another surge of courage to invent a sample saying so the client could 'judge my style'. (It took another check with hubby that what I came up with was worthy of sending.. I really should have believed in myself to begin with, but it's sooo haaard!)
Anyway, it resulted in my being asked to do the job. Which I have, in three days. No idea if that's reasonable or not, but guess what? I'm doing this for myself, not on someone else's time, unless I agree to do so. I have finished it and turned it in. There's just one problem now... I have no idea whether I'll really get paid or not. It's entirely possible, due to how this was set up, that she can blow me off even though she received the finished project. But oh well, such is life. It was for a measly fifteen bucks. Besides that, for me the biggest up-side to all this is that I did it! Nerves and all, I am overcoming and making something new of myself. That, I think, is worth celebrating.
Now if only I could find another job to apply for that I feel comfortable with!
Friday, May 16, 2014
Drowning
Post Soundtrack: Eyes On Fire (Zeds Dead Remix) by Blue Foundation
Today was my appointment with my rheumy, my first since my diagnosis. I felt and still feel a great deal of anxiety surrounding the appointment, even now that I am home. Upon arriving home, swimming in thoughts, ideas, and feelings, something caught my gaze. A dried up sprig of jasmine flowers, floating in a cup of water too big for the tiny sprig. Staring at it, I realized that I feel just like that poor flower. I feel like I'm drowning.
I had a lot of questions for my rheumy this time. Questions I've been saving up, that never seemed important enough or relevant enough to ask before. Questions that I had felt like only a real, true Lupus patient could ask, or should ask. And up until two months ago, I wasn't that. But now I am. So I worked up my nerve to make a list of "Should I be concerned about _______?" questions.
The first one of those questions ended up being the answer that surprised me the most, and has left me kinda reeling. It doesn't sound like that big a deal at first glance. "Should I be concerned about sunlight?" His immediate answer was an unequivocal, "Yes." It was the extent to which I needed to be concerned that has be struggling to breathe.
To the average person, avoiding sunlight doesn't sound like that difficult or daunting a prospect. After all, I already stay inside most of the day, for most of the week. Simple, right? Oh, how wrong that is.
Believe it or not, this means some really dramatic changes. I had asked him how drastic should my measures get to avoid sunlight? His answer included every one of the measures I've read about. Wear 50+ SPF sunscreen on all of my body under my clothes. Wear a wide-brimmed floppy hat. Don't go out in the afternoons, especially in the summer. Sounds simple, but is far from it.
Perhaps I'm just feeling overly emotional over this, but for once I'm finding myself not wanting to do what needs doing for this. Really, I seriously don't want to think about, much less actually follow through with the kind of changes this requires. Let me lay some of them out for you.
I shouldn't check the mail until after dark. I like to check the mail. I don't go outside a lot, so checking the mail is a nice, brief way to take in the outdoors with minimal exertion and pain. During the summer, it won't get dark until after nine p.m. Which means I won't be checking the mail at all.
I shouldn't go with hubby to pick up our son from school. It falls into that period of time when I really shouldn't be outside. We have minimal tinting on our car windows that seems to block quite a lot of the UV rays, but I know that probably isn't good enough. This really bothers me. Going to pick up my son is one of the ways I choose to interact with him, participate in his life. The (kinda?) good news on this is that next year he goes to high school, and will be getting himself to and from school. So soon I'd be missing out on it anyway. Is it worth it to ignore my doctor's advice and keep going to pick him up in the afternoons for what little is left of the school year? I honestly don't know.
Sundays will always be a problem issue when it comes to this sort of stuff. My husband is a preacher. I would devotedly go to services every Sunday anyway, for both services, regardless of whether he was the preacher or not. Due to these circumstances, it means Sundays are a great drain on me, in many ways. I exert myself more, expending much more energy that day than any other. I spend more time in the car that day than any other day, save those when we run around doing errands. And now? Now I am supposed to wear sunscreen and a floppy hat. I'm... at a complete loss on how to react there.
Does this mean I have to go to church services smelling like I've been at the pool? I have to research whether there are scentless sunscreens that come strong enough. Will my straw floppy hat be enough? Probably not. Which means I have to go looking for hats. I dislike hats. They make my head and body hot, they often are too tight on my head, and they restrict what little vision I have in the first place, making me feel faintly claustrophobic. More money to spend that I don't think we have.
I don't like thinking about having to restrict how much I go outside. I don't like to think about having to slather my entire body with sunscreen anytime I want to go somewhere. I don't like to think about wearing hats everywhere I go. I don't like having to pick and choose what avenues of protection I will take because of money limits. I don't like to think of taking more drugs to try and get this all under control, but yet still having to avoid the sun. I live in one of the sunniest, hottest places on earth. Avoiding the sun comes naturally here, but not to this extent.
I so very much feel like my poor little dried-up, drowning flower. And I, right at this moment, feel equally doomed. Intellectually I know that yes, these measures are worth doing, that they give me hope of not dying, that everything working in concert means I hopefully should live a normal lifespan. But not a normal life. It will never be any healthy person's version of normal. Not now, anyway. It seems like I have hit another point of mourning. So pardon my melancholy, I'll just be over here for a little bit, drowning in it all.
Today was my appointment with my rheumy, my first since my diagnosis. I felt and still feel a great deal of anxiety surrounding the appointment, even now that I am home. Upon arriving home, swimming in thoughts, ideas, and feelings, something caught my gaze. A dried up sprig of jasmine flowers, floating in a cup of water too big for the tiny sprig. Staring at it, I realized that I feel just like that poor flower. I feel like I'm drowning.
I had a lot of questions for my rheumy this time. Questions I've been saving up, that never seemed important enough or relevant enough to ask before. Questions that I had felt like only a real, true Lupus patient could ask, or should ask. And up until two months ago, I wasn't that. But now I am. So I worked up my nerve to make a list of "Should I be concerned about _______?" questions.
The first one of those questions ended up being the answer that surprised me the most, and has left me kinda reeling. It doesn't sound like that big a deal at first glance. "Should I be concerned about sunlight?" His immediate answer was an unequivocal, "Yes." It was the extent to which I needed to be concerned that has be struggling to breathe.
To the average person, avoiding sunlight doesn't sound like that difficult or daunting a prospect. After all, I already stay inside most of the day, for most of the week. Simple, right? Oh, how wrong that is.
Believe it or not, this means some really dramatic changes. I had asked him how drastic should my measures get to avoid sunlight? His answer included every one of the measures I've read about. Wear 50+ SPF sunscreen on all of my body under my clothes. Wear a wide-brimmed floppy hat. Don't go out in the afternoons, especially in the summer. Sounds simple, but is far from it.
Perhaps I'm just feeling overly emotional over this, but for once I'm finding myself not wanting to do what needs doing for this. Really, I seriously don't want to think about, much less actually follow through with the kind of changes this requires. Let me lay some of them out for you.
I shouldn't check the mail until after dark. I like to check the mail. I don't go outside a lot, so checking the mail is a nice, brief way to take in the outdoors with minimal exertion and pain. During the summer, it won't get dark until after nine p.m. Which means I won't be checking the mail at all.
I shouldn't go with hubby to pick up our son from school. It falls into that period of time when I really shouldn't be outside. We have minimal tinting on our car windows that seems to block quite a lot of the UV rays, but I know that probably isn't good enough. This really bothers me. Going to pick up my son is one of the ways I choose to interact with him, participate in his life. The (kinda?) good news on this is that next year he goes to high school, and will be getting himself to and from school. So soon I'd be missing out on it anyway. Is it worth it to ignore my doctor's advice and keep going to pick him up in the afternoons for what little is left of the school year? I honestly don't know.
Sundays will always be a problem issue when it comes to this sort of stuff. My husband is a preacher. I would devotedly go to services every Sunday anyway, for both services, regardless of whether he was the preacher or not. Due to these circumstances, it means Sundays are a great drain on me, in many ways. I exert myself more, expending much more energy that day than any other. I spend more time in the car that day than any other day, save those when we run around doing errands. And now? Now I am supposed to wear sunscreen and a floppy hat. I'm... at a complete loss on how to react there.
Does this mean I have to go to church services smelling like I've been at the pool? I have to research whether there are scentless sunscreens that come strong enough. Will my straw floppy hat be enough? Probably not. Which means I have to go looking for hats. I dislike hats. They make my head and body hot, they often are too tight on my head, and they restrict what little vision I have in the first place, making me feel faintly claustrophobic. More money to spend that I don't think we have.
I don't like thinking about having to restrict how much I go outside. I don't like to think about having to slather my entire body with sunscreen anytime I want to go somewhere. I don't like to think about wearing hats everywhere I go. I don't like having to pick and choose what avenues of protection I will take because of money limits. I don't like to think of taking more drugs to try and get this all under control, but yet still having to avoid the sun. I live in one of the sunniest, hottest places on earth. Avoiding the sun comes naturally here, but not to this extent.
I so very much feel like my poor little dried-up, drowning flower. And I, right at this moment, feel equally doomed. Intellectually I know that yes, these measures are worth doing, that they give me hope of not dying, that everything working in concert means I hopefully should live a normal lifespan. But not a normal life. It will never be any healthy person's version of normal. Not now, anyway. It seems like I have hit another point of mourning. So pardon my melancholy, I'll just be over here for a little bit, drowning in it all.
Thursday, May 15, 2014
Transitional Thoughts
Post Soundtrack: Tectonic Shift by Delerium
I have discovered something called Patients For A Moment that I am going to try and participate in. This month's topic is: How do you cope with transitions?
I have been dwelling on the idea of transitions for several days now, and have found myself oddly baffled by the idea. It isn't that I don't understand the word, nor is it that I do not grasp the idea. After a round with a 24 hour flu, and preparing for my next rheumy appointment tomorrow, I think I have finally settled on why I find it so difficult to write about transitions in my life, and why I can't figure out how to express myself about them.
Perhaps it is because I am so new to my diagnosis, but to me, every day is a transition. Granted, there are bigger ones than the average, everyday stuff, but that's just it... they are simply bigger rather than different. I suppose my biggest transition lately was the diagnosis itself. Having my suspicions proven true was more transition than I cared to have, to be honest. However, even the normal daily challenge of figuring out whether I can go to the store, or to my son's orchestra concert, or just to the mailbox, are more than I care to handle too. It seems like most of my transitions lately have been rather unpleasant.
But that still doesn't really answer the question, does it? For all my wrangling at the idea, I have managed to avoid the question itself. This is probably because the answer is as unpredictable as the transitions themselves. Let me explain a little further.
I have always been an emotional person. I empathize easily with other people. I generally find it very easy to express how I feel at any given moment. Because of this, I had always figured I would be an emotional volcano if anything major ever went wrong. Nine years ago today, I found out just exactly how I would respond in a crisis. Our house caught fire while we were gone to church services. We came home to fire trucks and one very ruined home.
My first frantic thought was how I had to get my son away from there, out of sight of our burned house, away from the potential emotional trauma. Thereafter I settled into a detached frame of mind. I dealt with what needed dealing with, and felt baffled and irritated by the strongly emotional reactions of my friends, who wept for my loss. At the time I didn't notice how cold I was inside. Later on I figured it was due to shock. I had to remind myself it was okay to cry, that it was alright to be upset. I had walled it all away, tried to keep it separate from myself. This reaction surprised me.
I've learned since that this is apparently how I handle things that are too big for me to functionally handle. After I was told by my rheumy two months ago that it was indeed Lupus, I expected to explode. I expected a hysterical bout of tears. It never came. I wept a few shocked tears on the way home, and a few more would leak out over the next few days, but beyond that, nothing.
It is possible this careful calmness is good for me, as it leaves me free to deal with the changing situation. It allows me to deal with things one small item at a time. It's been a process, and still is. How does one adjust mentally and emotionally to something so vastly life-altering and ever-changing? There is no rhythm to fall into, no routine to get used to, no solid new state of life to pace myself with. It adds a whole new layer of unpredictability to life that is one great, giant transition.
Now if only I could feel as calm about the little transitions, and less aggravated by their randomness!
I have discovered something called Patients For A Moment that I am going to try and participate in. This month's topic is: How do you cope with transitions?
I have been dwelling on the idea of transitions for several days now, and have found myself oddly baffled by the idea. It isn't that I don't understand the word, nor is it that I do not grasp the idea. After a round with a 24 hour flu, and preparing for my next rheumy appointment tomorrow, I think I have finally settled on why I find it so difficult to write about transitions in my life, and why I can't figure out how to express myself about them.
Perhaps it is because I am so new to my diagnosis, but to me, every day is a transition. Granted, there are bigger ones than the average, everyday stuff, but that's just it... they are simply bigger rather than different. I suppose my biggest transition lately was the diagnosis itself. Having my suspicions proven true was more transition than I cared to have, to be honest. However, even the normal daily challenge of figuring out whether I can go to the store, or to my son's orchestra concert, or just to the mailbox, are more than I care to handle too. It seems like most of my transitions lately have been rather unpleasant.
But that still doesn't really answer the question, does it? For all my wrangling at the idea, I have managed to avoid the question itself. This is probably because the answer is as unpredictable as the transitions themselves. Let me explain a little further.
I have always been an emotional person. I empathize easily with other people. I generally find it very easy to express how I feel at any given moment. Because of this, I had always figured I would be an emotional volcano if anything major ever went wrong. Nine years ago today, I found out just exactly how I would respond in a crisis. Our house caught fire while we were gone to church services. We came home to fire trucks and one very ruined home.
My first frantic thought was how I had to get my son away from there, out of sight of our burned house, away from the potential emotional trauma. Thereafter I settled into a detached frame of mind. I dealt with what needed dealing with, and felt baffled and irritated by the strongly emotional reactions of my friends, who wept for my loss. At the time I didn't notice how cold I was inside. Later on I figured it was due to shock. I had to remind myself it was okay to cry, that it was alright to be upset. I had walled it all away, tried to keep it separate from myself. This reaction surprised me.
I've learned since that this is apparently how I handle things that are too big for me to functionally handle. After I was told by my rheumy two months ago that it was indeed Lupus, I expected to explode. I expected a hysterical bout of tears. It never came. I wept a few shocked tears on the way home, and a few more would leak out over the next few days, but beyond that, nothing.
It is possible this careful calmness is good for me, as it leaves me free to deal with the changing situation. It allows me to deal with things one small item at a time. It's been a process, and still is. How does one adjust mentally and emotionally to something so vastly life-altering and ever-changing? There is no rhythm to fall into, no routine to get used to, no solid new state of life to pace myself with. It adds a whole new layer of unpredictability to life that is one great, giant transition.
Now if only I could feel as calm about the little transitions, and less aggravated by their randomness!
Saturday, May 10, 2014
Up And Down
Post Soundtrack: Changes by Yes
I'm finding it difficult to have any sort of standard by which to measure my good days and bad days. It sounds like it should be a no-brainer, I know. However, Lupus is odd in that it nearly forces you into living in the moment. Sure, there's a lot of positive in that, but it makes gauging progress as a whole fairly impossible. For example, today is going pretty well thus far. I have very close to no pain, no stiffness, no swollen feet, no flushed face. All is well, and it feels like all has been well and will be well, which is patently untrue.
Perhaps this is what leads some to go off their meds sometimes? It isn't something I've been able to relate to, as I am desperate to achieve and retain a pain-free existence. The idea of stopping my meds because I feel so much better seems counter-intuitive. However, when looked at with the perspective of being "in the now," it makes a little more sense.
I have my suspicions that my symptoms are worsening, but I have no proof, nothing to point my finger at and say, "Look, there is why I feel I am worse!" So, to remedy this, I intend to keep a sort of journal. It won't be anything fancy or complicated. It'll just be a day planner with simple notations. Each day will be assigned an up arrow or a down arrow. If I can do everything I want to do that day without pain, then it gets an up arrow. Anything else gets a down arrow. I will note if the day was busy, as that is quite relevant to the success or failure of my meds. I will also note the kind of problem I had that day in the simplest term possible.
The real issue here is how varied my days can be. In a single day I can go from energetic, painless, and happy.... then a few hours later end up feeling feverish, weak, exhausted, and pain-wracked. Up and down, down and up. Some days are steadily in between. Some are steadily bad or steadily good. I never know how the next day will be, or even the next hour. It's highly frustrating sometimes, and makes planning for anything problematic. But it's something I can't change about Lupus.
There is a lot I'm having to accept about having this disease, and very little of it is anything I care to be content with. That being said, I don't have much choice. I might as well make the best I can of these changes.
I'm finding it difficult to have any sort of standard by which to measure my good days and bad days. It sounds like it should be a no-brainer, I know. However, Lupus is odd in that it nearly forces you into living in the moment. Sure, there's a lot of positive in that, but it makes gauging progress as a whole fairly impossible. For example, today is going pretty well thus far. I have very close to no pain, no stiffness, no swollen feet, no flushed face. All is well, and it feels like all has been well and will be well, which is patently untrue.
Perhaps this is what leads some to go off their meds sometimes? It isn't something I've been able to relate to, as I am desperate to achieve and retain a pain-free existence. The idea of stopping my meds because I feel so much better seems counter-intuitive. However, when looked at with the perspective of being "in the now," it makes a little more sense.
I have my suspicions that my symptoms are worsening, but I have no proof, nothing to point my finger at and say, "Look, there is why I feel I am worse!" So, to remedy this, I intend to keep a sort of journal. It won't be anything fancy or complicated. It'll just be a day planner with simple notations. Each day will be assigned an up arrow or a down arrow. If I can do everything I want to do that day without pain, then it gets an up arrow. Anything else gets a down arrow. I will note if the day was busy, as that is quite relevant to the success or failure of my meds. I will also note the kind of problem I had that day in the simplest term possible.
The real issue here is how varied my days can be. In a single day I can go from energetic, painless, and happy.... then a few hours later end up feeling feverish, weak, exhausted, and pain-wracked. Up and down, down and up. Some days are steadily in between. Some are steadily bad or steadily good. I never know how the next day will be, or even the next hour. It's highly frustrating sometimes, and makes planning for anything problematic. But it's something I can't change about Lupus.
There is a lot I'm having to accept about having this disease, and very little of it is anything I care to be content with. That being said, I don't have much choice. I might as well make the best I can of these changes.
Saturday, April 26, 2014
Losing It
Post Soundtrack: Beyond This Moment by Patrick O'Hearn
There are many small ways we define ourselves. Even those of us who do not put our self-worth into outward things can be affected by the loss of significant details of our physical appearance. For me, it was, and is, I suppose, my hair. Perhaps it was a touch of vanity, but I tended to think of myself as having long hair. It was no great glory, nothing that anyone else but my husband and perhaps my mother would have admired, but it was mine. It was me.
Lupus changes everything.
Hair loss was one of the very first symptoms I noticed so long ago. When your hair is to your waist, you notice when more of it comes out than is normal, I can tell you for certain. But I came to accept it. For years, the amount of hair I lost in the shower stayed the same. But when things started getting worse, so did the hair loss. I was starting to find it on my pillow when I laid down every night. It accumulated in corners of the bathroom floor.
And then I started taking medicines like prednisone and methotrexate.
Needless to say, it got worse. I could run my fingers through my hair and come away with five or six hairs caught in my open fingers. If I kept finger-combing, I'd get a handful eventually. When I brushed my long, long hair, I would end up with a swoop of hair trailing from my brush. You could now trace my movements by looking for my hair, for it was sure to be anywhere I had gone.
It was all so demeaning. It was undeniably distressing. This part of myself was betraying me, leaving me in the lurch, quite literally. It hurt, like an emotional wound from someone's hurtful words... but there was no one to blame. There was only Lupus to be angry at, and that was rather a fruitless use of emotional energy.
And then I began to notice a thinning patch, right where my long hair parted.
That really was the last straw. Though I defined myself by my long hair, it was time to brave a change. At first, as I considered getting my hair cut, it only added to the sense of shame and dishonor of having to take such drastic measures. But I had the reassurance of being reasonably certain that, when cut short, my very straight hair was going to develop a wave. My mother had cut her hair very short, and found a gentle curl as a result. I had hopes for the same, and such hope (for one who had always wished for wavy hair) was one of the few things that kept me from despair.
It was cut shorter than I'd had it since being a toddler. It ended up at my jawline, but wonderfully layered and, tada, CURLY! Well, softly curly. No real curls, but definite body and ripples. It felt good!
It took some time to stop seeing myself as woman-with-long-hair. It took some time to adjust to feeling it tickle my neck. But I was pleased with it, overall.
What I find most strange about it all, though, is the sense of self-definition. I now prefer to define myself by my perky, curly do, rather than what it looks like when I go one too many months without getting it cut again. I have adjusted my mental image of myself to this new norm. It doesn't prevent the hair from continuing to fall out, of course, but it does hel me feel some better about it. Thinning spots can be covered with the new-found body my shortened hair possesses. I don't heavily brush my hair anymore (ruins the curls), so I don't get swaths of evidence in my brush. I do still find it on my pillow, and all over the bathroom floor, and in the shower drain, and on my clothes... but it is not so impactful now, being shorter and less noticeable.
So my sense of self has been rescued, a demoralizing situation turned around. Part of me wonders what will be next. Currently I am considering getting a handicapped placard for our car. Yup, you bet, that's making me feel very self-conscious and demoralized. However, I am coming to realize that it probably is a good idea, and would help me take better care of myself. One hurdle down, another to conquer.
It's astonishing how illness can force not just your life, but how you think of yourself, inside and out, to change so dramatically. No wonder I've heard so many facing Lupus to feel they are losing themselves to the disease. I'm doing my best to simply go with the flow, and learn new ways to be the new me.
There are many small ways we define ourselves. Even those of us who do not put our self-worth into outward things can be affected by the loss of significant details of our physical appearance. For me, it was, and is, I suppose, my hair. Perhaps it was a touch of vanity, but I tended to think of myself as having long hair. It was no great glory, nothing that anyone else but my husband and perhaps my mother would have admired, but it was mine. It was me.
Lupus changes everything.
Hair loss was one of the very first symptoms I noticed so long ago. When your hair is to your waist, you notice when more of it comes out than is normal, I can tell you for certain. But I came to accept it. For years, the amount of hair I lost in the shower stayed the same. But when things started getting worse, so did the hair loss. I was starting to find it on my pillow when I laid down every night. It accumulated in corners of the bathroom floor.
And then I started taking medicines like prednisone and methotrexate.
Needless to say, it got worse. I could run my fingers through my hair and come away with five or six hairs caught in my open fingers. If I kept finger-combing, I'd get a handful eventually. When I brushed my long, long hair, I would end up with a swoop of hair trailing from my brush. You could now trace my movements by looking for my hair, for it was sure to be anywhere I had gone.
It was all so demeaning. It was undeniably distressing. This part of myself was betraying me, leaving me in the lurch, quite literally. It hurt, like an emotional wound from someone's hurtful words... but there was no one to blame. There was only Lupus to be angry at, and that was rather a fruitless use of emotional energy.
And then I began to notice a thinning patch, right where my long hair parted.
That really was the last straw. Though I defined myself by my long hair, it was time to brave a change. At first, as I considered getting my hair cut, it only added to the sense of shame and dishonor of having to take such drastic measures. But I had the reassurance of being reasonably certain that, when cut short, my very straight hair was going to develop a wave. My mother had cut her hair very short, and found a gentle curl as a result. I had hopes for the same, and such hope (for one who had always wished for wavy hair) was one of the few things that kept me from despair.
It was cut shorter than I'd had it since being a toddler. It ended up at my jawline, but wonderfully layered and, tada, CURLY! Well, softly curly. No real curls, but definite body and ripples. It felt good!
It took some time to stop seeing myself as woman-with-long-hair. It took some time to adjust to feeling it tickle my neck. But I was pleased with it, overall.
What I find most strange about it all, though, is the sense of self-definition. I now prefer to define myself by my perky, curly do, rather than what it looks like when I go one too many months without getting it cut again. I have adjusted my mental image of myself to this new norm. It doesn't prevent the hair from continuing to fall out, of course, but it does hel me feel some better about it. Thinning spots can be covered with the new-found body my shortened hair possesses. I don't heavily brush my hair anymore (ruins the curls), so I don't get swaths of evidence in my brush. I do still find it on my pillow, and all over the bathroom floor, and in the shower drain, and on my clothes... but it is not so impactful now, being shorter and less noticeable.
So my sense of self has been rescued, a demoralizing situation turned around. Part of me wonders what will be next. Currently I am considering getting a handicapped placard for our car. Yup, you bet, that's making me feel very self-conscious and demoralized. However, I am coming to realize that it probably is a good idea, and would help me take better care of myself. One hurdle down, another to conquer.
It's astonishing how illness can force not just your life, but how you think of yourself, inside and out, to change so dramatically. No wonder I've heard so many facing Lupus to feel they are losing themselves to the disease. I'm doing my best to simply go with the flow, and learn new ways to be the new me.
Monday, April 21, 2014
Never Alone
Post Soundtrack: Home by Phillip Phillips
This is something I posted elsewhere not long ago. I thought it would be an interesting counterpoint to my other post today.
It is so surreal, examining what has become of my life. I don't think anyone effectively plans for who they will become and what will happen as time marches on. Most surreal of late for me, of course, is being diagnosed with Lupus. It's a strange idea to attribute to one's self. I've known and been close to folks with serious illnesses. Cancer, Lupus, Goodpasture's, MS, diabetes, and other life-threatening medical problems. Though it makes my heart ache to see them struggle, it does not surprise me to have my life touched by such things in that way. The more people you love and grow close to, the more likely these maladies will crop up. However, it is human nature to never expect it to happen to you. It comes as a shock, no matter how long or how much it was suspected, no matter how much research and info-gathering one has done on the disease. It still tends to feel rather earth-shattering.
Adjusting to this new awareness of one's physical self is complicated, involving grief, hope, worry, resignation, and in the end acceptance and contentment. At least that is how God intended us to work through it, relying and trusting in him to carry us through. That is not to say that emotional upheavals are somehow wrong to experience on this long road of dealing with disease. I firmly believe in allowing myself room to feel, to react to the unpleasantness and fear. But the strength I ask for in prayer is to overcome those feelings, and to press on renewed in spirit, if not in body. I am blessed to have a husband who helps me through this process, who holds me when I cry, and who walks beside me when I am ready to tackle life again. Between these two, my husband and my Lord, I know I will prevail, regardless of the physical outcome.
Am I afraid? Oh yes. But am I without hope? Most certainly not. This world is not my home, and if I must endure pain and sickness while here, I can look forward to a rest in heaven where such things cannot touch me any longer, so long as I keep my focus on what is truly important in this life. Faith, obedience, and working hard to do God's will. That is my comfort, my hope, and the key to the endurance I seek.
I write this so that others might have a peek into the struggle that goes on inside the heart of one faced with life-long disease. So that those struggling can be reminded of that which we are reaching for, beyond the scope of this physical body. But I also write this so I can see it myself, be reminded myself, and gather that necessary strength to get through the bad days. I am not alone, and I never will be.
This is something I posted elsewhere not long ago. I thought it would be an interesting counterpoint to my other post today.
It is so surreal, examining what has become of my life. I don't think anyone effectively plans for who they will become and what will happen as time marches on. Most surreal of late for me, of course, is being diagnosed with Lupus. It's a strange idea to attribute to one's self. I've known and been close to folks with serious illnesses. Cancer, Lupus, Goodpasture's, MS, diabetes, and other life-threatening medical problems. Though it makes my heart ache to see them struggle, it does not surprise me to have my life touched by such things in that way. The more people you love and grow close to, the more likely these maladies will crop up. However, it is human nature to never expect it to happen to you. It comes as a shock, no matter how long or how much it was suspected, no matter how much research and info-gathering one has done on the disease. It still tends to feel rather earth-shattering.
Adjusting to this new awareness of one's physical self is complicated, involving grief, hope, worry, resignation, and in the end acceptance and contentment. At least that is how God intended us to work through it, relying and trusting in him to carry us through. That is not to say that emotional upheavals are somehow wrong to experience on this long road of dealing with disease. I firmly believe in allowing myself room to feel, to react to the unpleasantness and fear. But the strength I ask for in prayer is to overcome those feelings, and to press on renewed in spirit, if not in body. I am blessed to have a husband who helps me through this process, who holds me when I cry, and who walks beside me when I am ready to tackle life again. Between these two, my husband and my Lord, I know I will prevail, regardless of the physical outcome.
Am I afraid? Oh yes. But am I without hope? Most certainly not. This world is not my home, and if I must endure pain and sickness while here, I can look forward to a rest in heaven where such things cannot touch me any longer, so long as I keep my focus on what is truly important in this life. Faith, obedience, and working hard to do God's will. That is my comfort, my hope, and the key to the endurance I seek.
I write this so that others might have a peek into the struggle that goes on inside the heart of one faced with life-long disease. So that those struggling can be reminded of that which we are reaching for, beyond the scope of this physical body. But I also write this so I can see it myself, be reminded myself, and gather that necessary strength to get through the bad days. I am not alone, and I never will be.
Maddening Success
Post Soundtrack: Out of Exile by Audioslave
Lupus is terribly confusing and frustrating. It rarely makes sense, never follows a set pattern, and leaves me feeling much more out of control than I'd care to. Currently my frustration is about success where it seems there should be none. The trouble with this success, you see, is that it leaves me waiting for the moment when it stops being successful, which is an inevitability.
Back in November, when things seemed to have gone so well, my rheumy decided to try and work me off of the prednisone. Fair enough, I know it isn't good for me. I've been blessed with few to nil side-affects, but if it was possible to remove the prednisone, I was more than happy to do so.
Only problem was, it didn't work. So he increased my methotrexate dose from six to eight. Tried again, with similar results. The first attempt lasted six days, the second lasted eight. The next appointment is when he declared it was lupus, and he also increased my MTX dose to ten. This time he asked me to wait a month before trying to reduce the prednisone to one and a half pills a day. I wonder if he knew what was going to happen next.
I suspect the impact of being finally diagnosed threw me into a flare. I haven't yet figured out how to tell what is and is not a flare, but it makes sense this time. For a full month, I was in misery. I had my malar rash daily, I took my ibuprofen daily. It was not fun. It filled me with fear concerning how bad things were getting. Then came the point where I was supposed to reduce my prednisone.
Like magic, my problems faded just before I started the reduced dose. Determined to try the one-and-a-half dose, I was nonetheless convinced it would fail miserably. It didn't.
I am now on day six of less prednisone, and it still seems to be working. I suppose I should be celebrating, but all I feel is a frustrated anger. Why couldn't it have spared me the last month? Why did the flare have to fade now? I feel like I'm being set up with a false result, given hope where there isn't any. Perhaps it is a bit defeatist, but who could blame me? There is no way this can stay successful when you consider the last month. It's impossible! But then again, if it does continue to work, maybe it'll open up more options for what can be done.
Regardless, I'm so sick and tired of not knowing. Of being unable to predict. Can I go out to lunch next week? Maybe! Maybe not! Will I be up to grocery shopping tomorrow? I hope so! All I have are hopes, ifs, maybes, and outright no-ideas. It's maddening. It's unfair. But unfortunately for me and the many others who suffer from it... it's Lupus.
Lupus is terribly confusing and frustrating. It rarely makes sense, never follows a set pattern, and leaves me feeling much more out of control than I'd care to. Currently my frustration is about success where it seems there should be none. The trouble with this success, you see, is that it leaves me waiting for the moment when it stops being successful, which is an inevitability.
Back in November, when things seemed to have gone so well, my rheumy decided to try and work me off of the prednisone. Fair enough, I know it isn't good for me. I've been blessed with few to nil side-affects, but if it was possible to remove the prednisone, I was more than happy to do so.
Only problem was, it didn't work. So he increased my methotrexate dose from six to eight. Tried again, with similar results. The first attempt lasted six days, the second lasted eight. The next appointment is when he declared it was lupus, and he also increased my MTX dose to ten. This time he asked me to wait a month before trying to reduce the prednisone to one and a half pills a day. I wonder if he knew what was going to happen next.
I suspect the impact of being finally diagnosed threw me into a flare. I haven't yet figured out how to tell what is and is not a flare, but it makes sense this time. For a full month, I was in misery. I had my malar rash daily, I took my ibuprofen daily. It was not fun. It filled me with fear concerning how bad things were getting. Then came the point where I was supposed to reduce my prednisone.
Like magic, my problems faded just before I started the reduced dose. Determined to try the one-and-a-half dose, I was nonetheless convinced it would fail miserably. It didn't.
I am now on day six of less prednisone, and it still seems to be working. I suppose I should be celebrating, but all I feel is a frustrated anger. Why couldn't it have spared me the last month? Why did the flare have to fade now? I feel like I'm being set up with a false result, given hope where there isn't any. Perhaps it is a bit defeatist, but who could blame me? There is no way this can stay successful when you consider the last month. It's impossible! But then again, if it does continue to work, maybe it'll open up more options for what can be done.
Regardless, I'm so sick and tired of not knowing. Of being unable to predict. Can I go out to lunch next week? Maybe! Maybe not! Will I be up to grocery shopping tomorrow? I hope so! All I have are hopes, ifs, maybes, and outright no-ideas. It's maddening. It's unfair. But unfortunately for me and the many others who suffer from it... it's Lupus.
Wednesday, April 16, 2014
Sun-kissed
Post Soundtrack: Lights (Bassnectar Remix) by Ellie Goulding
Star in the heavens
Flickering brightly
Seductive light
With a painful touch
Ever beckoning
Promising life
Reminding of death
'Touching my face
For all to see
And to wonder
Why I blush
What heats my soul
Only you and I know
You are not my demise
I am my own.
Star in the heavens
Flickering brightly
Seductive light
With a painful touch
Ever beckoning
Promising life
Reminding of death
'Touching my face
For all to see
And to wonder
Why I blush
What heats my soul
Only you and I know
You are not my demise
I am my own.
Wednesday, April 9, 2014
My Inner Demons
Post Soundtrack: Demons by Imagine Dragons
For me, music is very important. It is the blood of my daily life, the current that I can trace through my years. Each part of my life has accompanying songs, due to repetition as well as how each snog connects to my emotions at the time. This is why I've connected this blog with music so strongly. My music often reflects my mood or reveals something about my deeper feelings. The following are thoughts I wrote down some time ago concerning the song "Demons" by Imagine Dragons. it still speaks very strongly to me, and probably always will.
While not all the lyrics click with me, certain portions express ideas that resonate very deeply with me right now. Here are the pertinent portions and their meanings to me.
"I want to hide the truth
I want to shelter you
But with the beast inside
There's nowhere we can hide"
This section has several personal truths in it. Most acutely, I wish I could hide my pain from my friends and family, both the physical pain as well as the emotional pain. I'd rather spare the the shared hurt, if I could. I would rather my son not have to flinch from touching me sometimes out of fear of hurting me. It cuts me to know that I'm not the only one who has to deal with Lupus. My family does too, no matter how much I might wish it otherwise.
The use of the word "beast" amuses me. I have played World of Warcraft for years now, and I am known there as Beast or Beastie. However, it also applies very well to describing my Lupus, which is contained inside of me, impossible to escape. It is a creature of violence, a thing of cruelty, without a face to scream at or a being to blame. I can't run, I can't hide, for it is always with me.
"When you feel my heat
Look into my eyes
It's where my demons hide
It's where my demons hide
Don't get too close
It's dark inside
It's where my demons hide
It's where my demons hide"
This particularly strikes a chord with me, as heat is often what I feel when my hands are hurting. Sometimes other joints seem to get hot as well, but it is most notable in my hands. It can be so marked that even others can feel that the backs of my hands, along my knuckles, is significantly warmer than it should be. Also applicable now is the heat from my malar rash, warming my cheeks and making them pink.
Although I try to hide it much of the time, when I am truly in pain, I'm relatively certain that anyone paying attention can see it in my eyes. For me, my demons are not the darker, uglier part of myself. My demons are my pain and fear and despair that plague me. Those feelings run much deeper than even those who know me well understand. I don't believe they are prepared to deal with just how strong and fierce those feelings can get sometimes. I have felt the desire to warn them away from seeking too closely to find out how I'm doing. They aren't prepared for me to unload my distresses, worries, anger, frustrations, etc., on them. I'm learning better as time passes how to put up friendly shields, how to answer honestly that I'm okay, or alright, without going into details or burdening them with too much of the truth. I know they'd rather not deal with my demons. Even I don't want to deal with them, so it's understandable and entirely forgivable.
"Don't want to let you down
Though I am hell bound
Though this is all for you
Don't want to hide the truth"
Much of my enduring is for the sake of my family. I hang on for my husband, for my son. Without them I fear that I'd have given up before now. I strive to overcome because I don't want to drag them down too when it becomes too much. At the same time, though, I don't want to hide myself from them. I rely upon my connection with both of them to help keep me sane and hopeful, to help see my way through. I've tried once or twice to hide my pain, unhappiness, and despair from my husband. It never works, and often makes things worse. I've learned that I have to share it all, even the parts that are difficult to admit, both to benefit myself and my family. It helps me to stay strong, and it helps us as a family remain a coherent, united whole.
"Your eyes, they shine so bright
I want to save their light
I can't escape this now
Unless you show me how"
My husband and my son both bring light into the darkness I find myself in. I may not be able to escape the Lupus entirely, but through their love and efforts I don't have to be lost in the pain and fear. I have their encouragement, their love, their daily joys and sorrows to remind me what life is about, what is worth living for. It draws me away from the more morbid thoughts on living with Lupus. Their help, their sheer existence, is something I simply cannot live without now. (As if I ever could have before all this!)
So those are the bits of the song that chime with me, resonating with my darker feelings, but also addressing my hopes and helps. There are days when this song circles around in my head, the words and notes entwining with my emotions and thoughts. Sometimes I cry to it, sometimes I sing defiantly with it, and sometimes I just listen. It depends on my mood, my state of mind, and on h ow much I have been hurting that day. In its own way, it brings me a small measure of comfort and peace to let some of those feelings out in such a safe way.
It isn't just a song to me. It is an outlet, an expression, a way to gain strength and a way to seek comfort. There are many such songs, some with lyrics and some without. I'll share them as time goes on. For now, my demons are quieting in the face of blogging. Perhaps this too will help me find a measure of peace.
For me, music is very important. It is the blood of my daily life, the current that I can trace through my years. Each part of my life has accompanying songs, due to repetition as well as how each snog connects to my emotions at the time. This is why I've connected this blog with music so strongly. My music often reflects my mood or reveals something about my deeper feelings. The following are thoughts I wrote down some time ago concerning the song "Demons" by Imagine Dragons. it still speaks very strongly to me, and probably always will.
While not all the lyrics click with me, certain portions express ideas that resonate very deeply with me right now. Here are the pertinent portions and their meanings to me.
"I want to hide the truth
I want to shelter you
But with the beast inside
There's nowhere we can hide"
This section has several personal truths in it. Most acutely, I wish I could hide my pain from my friends and family, both the physical pain as well as the emotional pain. I'd rather spare the the shared hurt, if I could. I would rather my son not have to flinch from touching me sometimes out of fear of hurting me. It cuts me to know that I'm not the only one who has to deal with Lupus. My family does too, no matter how much I might wish it otherwise.
The use of the word "beast" amuses me. I have played World of Warcraft for years now, and I am known there as Beast or Beastie. However, it also applies very well to describing my Lupus, which is contained inside of me, impossible to escape. It is a creature of violence, a thing of cruelty, without a face to scream at or a being to blame. I can't run, I can't hide, for it is always with me.
"When you feel my heat
Look into my eyes
It's where my demons hide
It's where my demons hide
Don't get too close
It's dark inside
It's where my demons hide
It's where my demons hide"
This particularly strikes a chord with me, as heat is often what I feel when my hands are hurting. Sometimes other joints seem to get hot as well, but it is most notable in my hands. It can be so marked that even others can feel that the backs of my hands, along my knuckles, is significantly warmer than it should be. Also applicable now is the heat from my malar rash, warming my cheeks and making them pink.
Although I try to hide it much of the time, when I am truly in pain, I'm relatively certain that anyone paying attention can see it in my eyes. For me, my demons are not the darker, uglier part of myself. My demons are my pain and fear and despair that plague me. Those feelings run much deeper than even those who know me well understand. I don't believe they are prepared to deal with just how strong and fierce those feelings can get sometimes. I have felt the desire to warn them away from seeking too closely to find out how I'm doing. They aren't prepared for me to unload my distresses, worries, anger, frustrations, etc., on them. I'm learning better as time passes how to put up friendly shields, how to answer honestly that I'm okay, or alright, without going into details or burdening them with too much of the truth. I know they'd rather not deal with my demons. Even I don't want to deal with them, so it's understandable and entirely forgivable.
"Don't want to let you down
Though I am hell bound
Though this is all for you
Don't want to hide the truth"
Much of my enduring is for the sake of my family. I hang on for my husband, for my son. Without them I fear that I'd have given up before now. I strive to overcome because I don't want to drag them down too when it becomes too much. At the same time, though, I don't want to hide myself from them. I rely upon my connection with both of them to help keep me sane and hopeful, to help see my way through. I've tried once or twice to hide my pain, unhappiness, and despair from my husband. It never works, and often makes things worse. I've learned that I have to share it all, even the parts that are difficult to admit, both to benefit myself and my family. It helps me to stay strong, and it helps us as a family remain a coherent, united whole.
"Your eyes, they shine so bright
I want to save their light
I can't escape this now
Unless you show me how"
My husband and my son both bring light into the darkness I find myself in. I may not be able to escape the Lupus entirely, but through their love and efforts I don't have to be lost in the pain and fear. I have their encouragement, their love, their daily joys and sorrows to remind me what life is about, what is worth living for. It draws me away from the more morbid thoughts on living with Lupus. Their help, their sheer existence, is something I simply cannot live without now. (As if I ever could have before all this!)
So those are the bits of the song that chime with me, resonating with my darker feelings, but also addressing my hopes and helps. There are days when this song circles around in my head, the words and notes entwining with my emotions and thoughts. Sometimes I cry to it, sometimes I sing defiantly with it, and sometimes I just listen. It depends on my mood, my state of mind, and on h ow much I have been hurting that day. In its own way, it brings me a small measure of comfort and peace to let some of those feelings out in such a safe way.
It isn't just a song to me. It is an outlet, an expression, a way to gain strength and a way to seek comfort. There are many such songs, some with lyrics and some without. I'll share them as time goes on. For now, my demons are quieting in the face of blogging. Perhaps this too will help me find a measure of peace.
In the Beginning...
Post Soundtrack: November Rain by Guns N Roses
It seems I have found something worth blogging about. I never figured myself to be the sort to blog my thoughts and feelings, but this struggle I have begun is something I am not alone in. Perhaps some of us have many of the same thoughts and feelings, but are afraid to speak them out loud. Sometimes these things are painful, or shaming, or just expressing them makes them almost too real to deal with. It's a harsh thing, having to come to terms with life with Lupus. We don't have to feel isolated, and this is my small attempt to share my experience, so others won't feel so alone.
So first I will tell you my story of how I came to be diagnosed.
I honestly am not sure how far back my symptoms truly go. I can tell you when I began to suspect that something was wrong, however. Thirteen years ago, sometime after my son was born, I noticed two things that were very different than they used to be. Firstly was my hair loss. I had very long hair, usually somewhere around the middle of my back, occasionally as long as to my tailbone. All my life I'd had long hair, but all of a sudden there was a lot more hair on the shower wall. Yes, it's an odd habit, but due to how long my hair was, I tended to gather what loose hair I got tangled in my fingers when washing it, and stick it to the shower wall until I was done. It used to be just a few strands, no big deal. But it had changed to being more like what you'd expect from a hairbrush. It made me frown, but didn't really alarm me all that much.
Combined with my second problem, though, I was concerned. You see, despite being happy to be a mother, I found myself absolutely exhausted and sleeping through the afternoons. I know that likely some of you will suggest post-partum problems, but this did not fade. If anything, it got worse as my son got older. I felt horribly guilty for dozing on the couch when he was old enough to crawl or cruise. One day, after he learned to walk, I had napped, only to wake up to an odd sound. I went to look, and found my son on the other side of the very heavy sliding glass back door. I was shocked. He had managed to open the front door, walk around the house, and tap on the glass door to get my attention. Talk about a wake-up call.
So I did some research on what could involve both exhaustion and hair loss. The main thing that came up was Lupus, which scared me. I was hesitant to get too worked up, though, as those were two very minor problems in the range of issues Lupus patients had. So I went to my doctor and asked to be tested. My doctor at the time looked at me with exasperation, but tolerated the request. The blood tests came back negative, and the issue was dropped.
Life went on for several more years, until I had the chance to have lens implants in my eyes. (My eye difficulties are something I will address another time.) After the implants, I was shifted to another ophthalmologist. After examining me the first time, he told me to have my doctor test me for auto-immune problems, specifically Lupus. Alarms went off in my head, as we'd never really figured out what had caused my eye problems. So I dutifully and anxiously went to my doctor (a different one from last time) and asked to be tested. The blood test results were negative again, so life moved on once more.
Years passed again, but slowly certain things came to my attention. My exhaustion was rearing its ugly head again. I first dismissed it as stress and normal tiredness. I was babysitting regularly at the time for working mothers I knew, and could have as many as four children in the house, from diapers to my own elementary school age boy. That wasn't all, though. Joint aches began to crop up from time to time. I remember once I had stayed home from church services because I was sick. I had to go to the living room for something, and as I hobbled down the hallway, it felt as if someone had stuck a piece of rebar up in my hip socket instead of the bone that should be there. It was terribly painful, and had me gasping and crying. It got my attention, and I went back to researching online.
The more I looked, the more concerned I became, and the more common my joint aches became. I played World of Warcraft avidly, but was slowly having to play less and less. I used to be able to participate in raids and battlegrounds that lasted three or four hours. It came down to my being able to tolerate it only for about an hour, then I would have to stop, because my fingers and wrists felt swollen and hot. This was not right. It was time to see my doctor.
In I went (different doctor yet again), with hubby beside me. I told him hesitantly and fearfully about my joint aches, about my exhaustion, all the while fearing he would say I was a hypochondriac. He listened, then sent me to do a bunch of blood tests. I went willingly, hoping it would reveal something this time. No dice. It all came back negative. My doctor explained patiently and condescendingly that I just had a weak constitution, and that if I was tired, I should sleep. He briefly massaged my finger joints, and said they weren't swollen, and would say no more about my joint pain. I wanted to believe him, and so went home feeling relieved and reassured.
Except that my joint pain and tiredness did not abate. They only got worse.
After enduring late summer monsoons, during which I could predict when it would rain and when it wouldn't via my joints, and after a winter that still was filled with great pain that kept me home almost all the time, we finally decided enough was enough. If I had to bully my doctor into sending me to a rheumatologist, I would. While I did some research online for local rheumys who understood Lupus, hubby did some research into our insurance policy. Glory of glories, it turned out we didn't need a referral from my regular doctor. We coudl by-pass him altogether and go straight to the rheumatologist. It was a vast relief not to have to confront the doctor and tell him he was wrong and to send me to a doctor who knew what I was talking about!
So we made that first appointment, which ended up being a three month wait. I hated waiting that long to finally talk to someone who could tell me if I was crazy or not, but at least the ball was rolling... sort of. So I filled the time doing as much learning about Lupus as I could. I skimmed books, I pored over facts online. Finally the day came, and I went in with fear and trembling.
It was a baffling experience. It was at a teaching university, so the doctor had two students with him. They talked over my head, sometimes saying things I could follow (due to my research) and other times speaking gibberish as far as I was concerned. My eyes got some attention, with the doc calling them mangled. I also found out that apparently my arms are hyper-extensive. He had me hold out my arms horizontally, palms up. To my astonishment, all three of them began exclaiming and playing with how far and what directions my joints could bend. I just stared at them as if they'd lost their minds, and answered no, I hadn't shown off being flexible as a child. They tested me for fibro, but none of the points were tender or painful. However, as if on a hunch, the doc reached behind me and touched first one point behind my hips (ouch!), and then the other (YOWCH!). The right side felt like he was pressing crushed glass into my bone, oooh, how it hurt!
Well, that began a bit of a journey. That first appointment had him suspecting ankylosing spondylitis, which he tested for along with all the other markers for autoimmune problems. The results were, predictably, negative. However, this doctor did not dismiss my pain and distress. He assured me that he would do his best to get to the bottom of it, if possible, but for the time being, he was going to do his best to address my pain.
It was a process for certain. He first tried putting me on a very high amount of ibuprofen daily. I was taking 800mg pills three times a day. That helped some, but didn't do much more than muffle the pain. Then he tried putting me on prednisone along with the ibuprofen. The way I came up to describe it is unorthodox, but accurate to how it felt. Imagine an entire room filled with speakers, all laying on the floor pointing upward. Now imagine them all playing some loud music. That's my pain. Sometimes they would be turned up loud, sometimes softer, but it always was a racket, you see? The ibuprofen's impact was like tossing a nice thick blanket over the speakers. It muffles them, but doesn't really take too much away from the noise, even when the 'volume' was low. When he added prednisone, it was astonishing, because it was like going through this room of speakers and unplugging a bunch of them. He later upped my prednisone dose, and it was like more of the speakers were unplugged, leaving me with just a handful, though they still boomed out the music pretty loud sometimes. I could use the ibuprofen to help muffle it, but it was still there.
So his next move was to put me on methotrexate. The difference was again startling. While the prednisone pulled the plugs on the speakers, and ibuprofen muffled them, MTX was like volume control. It forced the volume range to stay lower, softer. It was pretty near to bliss to me. It was also hugely impactful to me that it was possible to really do something about the pain. It gave me hope that maybe, just maybe, we could solve this. Make it better.
November was a heavenly month, very nearly pain-free and so very cheerful for me. But that all changed. Again.
During the Thanksgiving trip to my in-laws, I had a terrible pain attack. A pain attack was something different from my usual pain, reminding me more of seizure than anything else. It would come in waves, wrack my body with intense pain, and then fade slowly away. The one I had at Thanksgiving was the worst I'd ever had. I got through it, though, and hoped that would be it. It wasn't. Somewhere about that point, I began noticing feeling flushed from time to time, but without a fever. I dismissed it.
Early in December we had an unseasonable cold snap. It got severely cold, for this area, and I suffered badly for it. It was crippling, and had me curled up at home constantly, taking as much ibuprofen as I was allowed. It seems like since that time, I haven't had more than a week or so of good days before things get painful again. Meanwhile I kept having those face flushes. I finally asked my doctor about it two appointments ago now. He asked for pictures. Let me tell you, it was so hard on me taking those pictures. It's difficult to describe, as it has to do with fear of Lupus, fear of it not being Lupus, fear I'm making much about nothing, just plain fear.
Last appointment, when I showed him those pictures, some of them he dismissed, but several had whatever it was he was looking for. Yes indeed, this was a malar rash, and that meant he was declaring this Lupus officially.
I think I handled it well. I'd had a long time to think about it, to build up to it, to consider the possibility. Perhaps I even handled it too well. I leaked tears on the way home, and fretted a lot afterwards, and fought against the idea of death. I sought support from friends and family, some of which met my expectations, and some of which fell woefully short. They all love me, though, and I know they can't always be exactly what I need. I've spent time since then trying to come to grips with this life-changing diagnosis.
It's been a month since coming face-to-face with my fears. I still haven't had the hysterical crying fit I expected to, though I know I've fought it down quite a few times. I think it's settled into the minds of most folks I'm close to, though I have no idea how many of them grasp it. So here I am, ready to share my journey, my feelings, my inner thoughts, and my experiences with the world. Buckle up tight, y'all. It's gonna be a rough ride.
It seems I have found something worth blogging about. I never figured myself to be the sort to blog my thoughts and feelings, but this struggle I have begun is something I am not alone in. Perhaps some of us have many of the same thoughts and feelings, but are afraid to speak them out loud. Sometimes these things are painful, or shaming, or just expressing them makes them almost too real to deal with. It's a harsh thing, having to come to terms with life with Lupus. We don't have to feel isolated, and this is my small attempt to share my experience, so others won't feel so alone.
So first I will tell you my story of how I came to be diagnosed.
I honestly am not sure how far back my symptoms truly go. I can tell you when I began to suspect that something was wrong, however. Thirteen years ago, sometime after my son was born, I noticed two things that were very different than they used to be. Firstly was my hair loss. I had very long hair, usually somewhere around the middle of my back, occasionally as long as to my tailbone. All my life I'd had long hair, but all of a sudden there was a lot more hair on the shower wall. Yes, it's an odd habit, but due to how long my hair was, I tended to gather what loose hair I got tangled in my fingers when washing it, and stick it to the shower wall until I was done. It used to be just a few strands, no big deal. But it had changed to being more like what you'd expect from a hairbrush. It made me frown, but didn't really alarm me all that much.
Combined with my second problem, though, I was concerned. You see, despite being happy to be a mother, I found myself absolutely exhausted and sleeping through the afternoons. I know that likely some of you will suggest post-partum problems, but this did not fade. If anything, it got worse as my son got older. I felt horribly guilty for dozing on the couch when he was old enough to crawl or cruise. One day, after he learned to walk, I had napped, only to wake up to an odd sound. I went to look, and found my son on the other side of the very heavy sliding glass back door. I was shocked. He had managed to open the front door, walk around the house, and tap on the glass door to get my attention. Talk about a wake-up call.
So I did some research on what could involve both exhaustion and hair loss. The main thing that came up was Lupus, which scared me. I was hesitant to get too worked up, though, as those were two very minor problems in the range of issues Lupus patients had. So I went to my doctor and asked to be tested. My doctor at the time looked at me with exasperation, but tolerated the request. The blood tests came back negative, and the issue was dropped.
Life went on for several more years, until I had the chance to have lens implants in my eyes. (My eye difficulties are something I will address another time.) After the implants, I was shifted to another ophthalmologist. After examining me the first time, he told me to have my doctor test me for auto-immune problems, specifically Lupus. Alarms went off in my head, as we'd never really figured out what had caused my eye problems. So I dutifully and anxiously went to my doctor (a different one from last time) and asked to be tested. The blood test results were negative again, so life moved on once more.
Years passed again, but slowly certain things came to my attention. My exhaustion was rearing its ugly head again. I first dismissed it as stress and normal tiredness. I was babysitting regularly at the time for working mothers I knew, and could have as many as four children in the house, from diapers to my own elementary school age boy. That wasn't all, though. Joint aches began to crop up from time to time. I remember once I had stayed home from church services because I was sick. I had to go to the living room for something, and as I hobbled down the hallway, it felt as if someone had stuck a piece of rebar up in my hip socket instead of the bone that should be there. It was terribly painful, and had me gasping and crying. It got my attention, and I went back to researching online.
The more I looked, the more concerned I became, and the more common my joint aches became. I played World of Warcraft avidly, but was slowly having to play less and less. I used to be able to participate in raids and battlegrounds that lasted three or four hours. It came down to my being able to tolerate it only for about an hour, then I would have to stop, because my fingers and wrists felt swollen and hot. This was not right. It was time to see my doctor.
In I went (different doctor yet again), with hubby beside me. I told him hesitantly and fearfully about my joint aches, about my exhaustion, all the while fearing he would say I was a hypochondriac. He listened, then sent me to do a bunch of blood tests. I went willingly, hoping it would reveal something this time. No dice. It all came back negative. My doctor explained patiently and condescendingly that I just had a weak constitution, and that if I was tired, I should sleep. He briefly massaged my finger joints, and said they weren't swollen, and would say no more about my joint pain. I wanted to believe him, and so went home feeling relieved and reassured.
Except that my joint pain and tiredness did not abate. They only got worse.
After enduring late summer monsoons, during which I could predict when it would rain and when it wouldn't via my joints, and after a winter that still was filled with great pain that kept me home almost all the time, we finally decided enough was enough. If I had to bully my doctor into sending me to a rheumatologist, I would. While I did some research online for local rheumys who understood Lupus, hubby did some research into our insurance policy. Glory of glories, it turned out we didn't need a referral from my regular doctor. We coudl by-pass him altogether and go straight to the rheumatologist. It was a vast relief not to have to confront the doctor and tell him he was wrong and to send me to a doctor who knew what I was talking about!
So we made that first appointment, which ended up being a three month wait. I hated waiting that long to finally talk to someone who could tell me if I was crazy or not, but at least the ball was rolling... sort of. So I filled the time doing as much learning about Lupus as I could. I skimmed books, I pored over facts online. Finally the day came, and I went in with fear and trembling.
It was a baffling experience. It was at a teaching university, so the doctor had two students with him. They talked over my head, sometimes saying things I could follow (due to my research) and other times speaking gibberish as far as I was concerned. My eyes got some attention, with the doc calling them mangled. I also found out that apparently my arms are hyper-extensive. He had me hold out my arms horizontally, palms up. To my astonishment, all three of them began exclaiming and playing with how far and what directions my joints could bend. I just stared at them as if they'd lost their minds, and answered no, I hadn't shown off being flexible as a child. They tested me for fibro, but none of the points were tender or painful. However, as if on a hunch, the doc reached behind me and touched first one point behind my hips (ouch!), and then the other (YOWCH!). The right side felt like he was pressing crushed glass into my bone, oooh, how it hurt!
Well, that began a bit of a journey. That first appointment had him suspecting ankylosing spondylitis, which he tested for along with all the other markers for autoimmune problems. The results were, predictably, negative. However, this doctor did not dismiss my pain and distress. He assured me that he would do his best to get to the bottom of it, if possible, but for the time being, he was going to do his best to address my pain.
It was a process for certain. He first tried putting me on a very high amount of ibuprofen daily. I was taking 800mg pills three times a day. That helped some, but didn't do much more than muffle the pain. Then he tried putting me on prednisone along with the ibuprofen. The way I came up to describe it is unorthodox, but accurate to how it felt. Imagine an entire room filled with speakers, all laying on the floor pointing upward. Now imagine them all playing some loud music. That's my pain. Sometimes they would be turned up loud, sometimes softer, but it always was a racket, you see? The ibuprofen's impact was like tossing a nice thick blanket over the speakers. It muffles them, but doesn't really take too much away from the noise, even when the 'volume' was low. When he added prednisone, it was astonishing, because it was like going through this room of speakers and unplugging a bunch of them. He later upped my prednisone dose, and it was like more of the speakers were unplugged, leaving me with just a handful, though they still boomed out the music pretty loud sometimes. I could use the ibuprofen to help muffle it, but it was still there.
So his next move was to put me on methotrexate. The difference was again startling. While the prednisone pulled the plugs on the speakers, and ibuprofen muffled them, MTX was like volume control. It forced the volume range to stay lower, softer. It was pretty near to bliss to me. It was also hugely impactful to me that it was possible to really do something about the pain. It gave me hope that maybe, just maybe, we could solve this. Make it better.
November was a heavenly month, very nearly pain-free and so very cheerful for me. But that all changed. Again.
During the Thanksgiving trip to my in-laws, I had a terrible pain attack. A pain attack was something different from my usual pain, reminding me more of seizure than anything else. It would come in waves, wrack my body with intense pain, and then fade slowly away. The one I had at Thanksgiving was the worst I'd ever had. I got through it, though, and hoped that would be it. It wasn't. Somewhere about that point, I began noticing feeling flushed from time to time, but without a fever. I dismissed it.
Early in December we had an unseasonable cold snap. It got severely cold, for this area, and I suffered badly for it. It was crippling, and had me curled up at home constantly, taking as much ibuprofen as I was allowed. It seems like since that time, I haven't had more than a week or so of good days before things get painful again. Meanwhile I kept having those face flushes. I finally asked my doctor about it two appointments ago now. He asked for pictures. Let me tell you, it was so hard on me taking those pictures. It's difficult to describe, as it has to do with fear of Lupus, fear of it not being Lupus, fear I'm making much about nothing, just plain fear.
Last appointment, when I showed him those pictures, some of them he dismissed, but several had whatever it was he was looking for. Yes indeed, this was a malar rash, and that meant he was declaring this Lupus officially.
I think I handled it well. I'd had a long time to think about it, to build up to it, to consider the possibility. Perhaps I even handled it too well. I leaked tears on the way home, and fretted a lot afterwards, and fought against the idea of death. I sought support from friends and family, some of which met my expectations, and some of which fell woefully short. They all love me, though, and I know they can't always be exactly what I need. I've spent time since then trying to come to grips with this life-changing diagnosis.
It's been a month since coming face-to-face with my fears. I still haven't had the hysterical crying fit I expected to, though I know I've fought it down quite a few times. I think it's settled into the minds of most folks I'm close to, though I have no idea how many of them grasp it. So here I am, ready to share my journey, my feelings, my inner thoughts, and my experiences with the world. Buckle up tight, y'all. It's gonna be a rough ride.
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