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.
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