Every day is something different when you deal with psoriatic arthritis. One day everything is great, pain is minimal, plaques are few and are not irritated; the next day is absolutely miserable. There are, of course, in between days, where there is only pain in select areas, but lately it seems to be all or nothing here. I have been on the Celebrex now for a couple of months and I'm starting to wonder if I am already building up an immunity to it, or if my disease is just progressing beyond what the 400mg/day can handle. Besides the Celebrex I have also been on prednisone (again) for the past 3 weeks. Like most everyone else, I dislike the steroids because they lead to weight gain. It has helped my hands, though, so that I have been able to do more of the tasks that previously left me completely distraught. At least that was the case, until the past couple of days.
My hands are pretty swollen, and they have been hurting in spite of the medicine. Also my knees are hurting rather badly. Both of my kneecaps feel like someone has taken a hammer and beaten them.
Hopefully tomorrow is a better day.
Wednesday, May 4, 2011
Sunday, May 1, 2011
Fear
I just read a blog post by a friend from my writers group, and she was talking about facing our fears. I think it was a pretty great post and very timely for me. Having dealt with such a bad health episode over the winter, it really put a few things in perspective. In my previous posts you have read how upset and depressed I was at times. There were days when I felt completely hopeless and like my life would never mean anything because I would never feel like doing anything, therefore nothing was ever going to be accomplished. This is one of the biggest fears I have.
Now that I am feeling better, things don't seem quite so bleak. I am getting more active in things I enjoy doing such as my writing, and am even able to crochet little bits at a time again. I have also started working on improving my artistic skills in the area of drawing. I have always loved to draw but never felt I was any good at it. I am teaching myself now through a variety of book and online tutorials; if you've been to my Facebook page you have probably already seen some of my work. It is a great feeling to be able to do things without paying for every move by being in pain for three or four days afterward.
So, in regards to psoriatic arthritis/psoriasis and fear, you might be asking yourself how the two relate. Many people with this disease have very valid fears. For instance, during rough times I fear that I will never get better. Others fear how people will react to them if they are covered in "unsightly" patches of red or dry skin, especially if it is scaly. While these fears are common, we should not let them rule our lives. With medication and time, I find that I always manage to get through the rough arthritis patches, so when it feels like there is no hope, I try to remind myself that there is light at the end of the tunnel. When I start breaking out in spots and want to run away to join a family of leopards (because that's the only place I think I'll fit in), I try to find ways to be comfortable being me. This means that if I am hot and want to wear shorts even though my legs are covered, so what? Think positive. It is sunny weather now, and sunlight really helps clear the psoriasis. Plus, why should I suffer by wearing my blue jeans in 90 degree, blistering heat while others are wearing whatever they please? I have a RIGHT TO BE COMFORTABLE,TOO! It's taken many years and a huge amount of support for me to be able to believe in this, but I am thankful that I finally woke up and stopped being afraid of what everyone else just doesn't understand. (There are more of my thoughts on this in last week's posts.)
I would like to hear from you about your fears and how you deal with them! Leave a comment or feel free to drop me an e-mail :)
Now that I am feeling better, things don't seem quite so bleak. I am getting more active in things I enjoy doing such as my writing, and am even able to crochet little bits at a time again. I have also started working on improving my artistic skills in the area of drawing. I have always loved to draw but never felt I was any good at it. I am teaching myself now through a variety of book and online tutorials; if you've been to my Facebook page you have probably already seen some of my work. It is a great feeling to be able to do things without paying for every move by being in pain for three or four days afterward.
So, in regards to psoriatic arthritis/psoriasis and fear, you might be asking yourself how the two relate. Many people with this disease have very valid fears. For instance, during rough times I fear that I will never get better. Others fear how people will react to them if they are covered in "unsightly" patches of red or dry skin, especially if it is scaly. While these fears are common, we should not let them rule our lives. With medication and time, I find that I always manage to get through the rough arthritis patches, so when it feels like there is no hope, I try to remind myself that there is light at the end of the tunnel. When I start breaking out in spots and want to run away to join a family of leopards (because that's the only place I think I'll fit in), I try to find ways to be comfortable being me. This means that if I am hot and want to wear shorts even though my legs are covered, so what? Think positive. It is sunny weather now, and sunlight really helps clear the psoriasis. Plus, why should I suffer by wearing my blue jeans in 90 degree, blistering heat while others are wearing whatever they please? I have a RIGHT TO BE COMFORTABLE,TOO! It's taken many years and a huge amount of support for me to be able to believe in this, but I am thankful that I finally woke up and stopped being afraid of what everyone else just doesn't understand. (There are more of my thoughts on this in last week's posts.)
I would like to hear from you about your fears and how you deal with them! Leave a comment or feel free to drop me an e-mail :)
Saturday, April 23, 2011
Relaxing
Today has been a pretty fair day over all. The bottoms of my feet have hurt some, and of course my hands remain semi-sore all the time. However, everything else has been good. Despite feeling better in my joints, I am extremely tired after only short bits of activity, so have to rest a lot. Was able to assist my husband in making a wonderful roasted lamb dinner for our Easter treat. We'll be heading to his parent's tomorrow afternoon for a turkey/ham dinner. Of course in the morning it will be lots of fun watching the MuffinMan find all of his Easter surprises and hunt for the eggs that he dyed this evening. :)
I am very thankful that I feel up to the task of handling the festivities...if this were a couple of months ago, or if I felt now like I did then, I'm afraid that he would be hunting eggs in my bedroom or else I would miss out on the activities. Every day is something new with a toddler, and missing out is just not an option for me; I refuse to let this disease ruin everything!
I am very thankful that I feel up to the task of handling the festivities...if this were a couple of months ago, or if I felt now like I did then, I'm afraid that he would be hunting eggs in my bedroom or else I would miss out on the activities. Every day is something new with a toddler, and missing out is just not an option for me; I refuse to let this disease ruin everything!
Thursday, April 21, 2011
Getting my life back
If you've been keeping up with my random posts, you know that it was a pretty rough winter around my house. Thankfully though, the hard part seems to be over for a while. The sun has decided to stick around and warm things up, including my old, creaky joints. I am now able to move around almost as freely as I would like. I believe this is due in part to the warmer weather and in huge response to the Celebrex that the doctor put me on last month. I also have to say a huge thanks for the love and support of my family!!! Without my husband's help I would not have made it through what felt like some pretty dark days there for a while; and without the in-laws (including hubby's aunt) pitching in to help with the baby, we might all have gone crazy.
So things have been picking up nicely. I am no longer confined to my bed, which is a definite blessing! I am also no longer requiring the use of my walking cane on a regular basis, but only on really bad days. Most of my knee pain is gone and my feet are doing well as long as I keep them propped up regularly. A lot of the pain I still have is concentrated in my hands. I was back at the doctor yesterday (4/20) for the results of my blood work, and she FINALLY gave me my long-awaited prescription for HUMIRA!!! The only problem I have now is that the pharmacy says it will take 3-4 more weeks for them to actually get the medicine. *Sigh* I've been waiting since September and it seems like it will never happen. Since the arthritic parts of me are feeling pretty good I think I will manage to do okay in that area. However, I am now 85% covered in psoriasis plaques and was really looking forward to getting the HUMIRA soon so that I could get some relief with that. It is a little embarrassing to have people stare at my arms/legs when I go out in public, but thanks again to the encouragement of my husband, I go out feeling comfortable being ME! I am not ashamed to wear my shorts and tank-tops just because I have plaques. The philosophy that I have developed to help me get past the self-consciousness is simple: People are afraid of that which they do not understand, therefore if they have issues with my condition and choose to ridicule or stare or some other rude thing, that is THEIR problem, not mine! I am fully aware of my own situation and I choose to be comfortable, not hidden!
So things have been picking up nicely. I am no longer confined to my bed, which is a definite blessing! I am also no longer requiring the use of my walking cane on a regular basis, but only on really bad days. Most of my knee pain is gone and my feet are doing well as long as I keep them propped up regularly. A lot of the pain I still have is concentrated in my hands. I was back at the doctor yesterday (4/20) for the results of my blood work, and she FINALLY gave me my long-awaited prescription for HUMIRA!!! The only problem I have now is that the pharmacy says it will take 3-4 more weeks for them to actually get the medicine. *Sigh* I've been waiting since September and it seems like it will never happen. Since the arthritic parts of me are feeling pretty good I think I will manage to do okay in that area. However, I am now 85% covered in psoriasis plaques and was really looking forward to getting the HUMIRA soon so that I could get some relief with that. It is a little embarrassing to have people stare at my arms/legs when I go out in public, but thanks again to the encouragement of my husband, I go out feeling comfortable being ME! I am not ashamed to wear my shorts and tank-tops just because I have plaques. The philosophy that I have developed to help me get past the self-consciousness is simple: People are afraid of that which they do not understand, therefore if they have issues with my condition and choose to ridicule or stare or some other rude thing, that is THEIR problem, not mine! I am fully aware of my own situation and I choose to be comfortable, not hidden!
Wednesday, February 16, 2011
Sunshine!
The weather is finally starting to warm up and with it has come some pretty good news for a change. I am starting to be able to move around a lot more. I've been out of the house twice this week already and for that, I'm really excited! It's nice to be able to get up and do things when you want to instead of when you absolutely have to or not being able to do them at all. I am able to help out more with things around the house, like having energy to fold laundry, help with a few cleanup tasks, even get snacks for my son occasionally. While these may seem insignificant to some, they are major steps for me. It has also helped to ease some of the frustration from my hubby so that he can rest once in a while instead of being on the go between Alex and I tweny-four hours a day.
I still have my appointment coming up with the rheumatologist on the 23rd, and I certainly hope he will write the prescription for my HUMIRA, because this is getting crazy. I NEED my medication! For now I will settle for the warm weather and feeling a lot better than I do on the cold/rough days. YAY!
I still have my appointment coming up with the rheumatologist on the 23rd, and I certainly hope he will write the prescription for my HUMIRA, because this is getting crazy. I NEED my medication! For now I will settle for the warm weather and feeling a lot better than I do on the cold/rough days. YAY!
Thursday, February 3, 2011
Cursed
Okay a quick update for today. The pharmacy called to tell me that the doctor who was supposed to look at my chart (I mentioned yesterday) was called out for hospital duty today and her replacement would not write my prescription because he doesn't know my case; therefore he said I have to wait until the 23rd when I see the rheumatologist. Really?? I am starting to understand what Job went through and I totally feel his pain...
Wednesday, February 2, 2011
Still Waiting
It's been almost three months since my last update and I must say that there is a good (or bad depending on how you look at it) reason for it. Since November things have progressed at a rate that even I don't believe. The doctor that I saw told me that the reason for the speed is probably due to rebound effect from being on/off/on/off the medication. I guess I understand that, and I can guarantee that if I can help it, once I get back on the medicine I am not going off!
I don't want to drag this post out so we will go with the short version of the story. Mid-Nov I sprained my right knee and wound up in a brace for a while. During Christmas time I developed problems in my right hand and wrist that now keep me from being able to do anything with it. I'm not sure if it was all the crocheting I did for presents or just the natural progression of my arthritis. Either way, I am one handed now. My index finger on this hand is in the same shape as my middle finger on the left hand that I've mentioned in previous posts. After we finished shopping for our son, I made myself stay home for several days before Christmas so that I was able to get out and head over to the in-law's for dinner. That actually went pretty well. Once we got home I was not much feeling like going out anymore so I was back to camping on the couch, until one day...
January 6 I was scheduled for another doctor's appointment, however, on the way out the door my very helpful husband and I made a misstep and ended up falling off of the porch together. Well, he fell on top of me but quickly rolled off so he didn't hurt me worse. Luckily nothing was broken except my pride and self-esteem. However, I did hit my head on the sidewalk and jar every bone in my already aching body. Needless to say, I missed my appointment. The next day I was so sore that I opted to stay in bed all day. What I found out by doing this was that I actually felt a bit better in my bed than I did on the couch because I was able to move around more freely than being stuck in one position. So, that's where I've been camping ever since. I can sit up, lie down, stretch, prop up my legs or not, I can get as comfy as I want. I don't often sit up for long because it makes my legs ache something terrible, and as for getting up...I get to the bathroom alright, with a lot of help from hubby most of the time, and a lot of screaming/crying from pain ALL the time.
So whatever happened to the clinic getting my shots for me? I've gotten so much run-around that I don't really even know right now. I've been told everything from "your medicine was ordered Nov. 19, it takes 6 to 8 weeks to get here and should be in any time now"... to just last week I heard "sorry, I don't have a prescription for your medicine from one of our doctor's...it appears the prescription you have is from an outside doctor and we can't accept it, so I'll leave your chart with the doc and see if she'll write a 'scrip for you but she won't be in until Feb 3, so we'll let you know. Sorry, even if I had a whole case of the med here I couldn't give it to you." This is the point where I want to tear my hear out by the roots and start throwing things around the room!!! I just want to get better, but it doesn't seem anyone else desires the same, except for hubby who would manufacture the shots himself if he could, I know he would.
For now I'm just taking my Ibuprofen, for lack of a better prescription, still crying a lot, and pushing myself to do as much as I can without killing over. I managed to take a whole shower standing up tonight, without my shower chair; something I haven't done in two months...one small victory at a time!
I don't want to drag this post out so we will go with the short version of the story. Mid-Nov I sprained my right knee and wound up in a brace for a while. During Christmas time I developed problems in my right hand and wrist that now keep me from being able to do anything with it. I'm not sure if it was all the crocheting I did for presents or just the natural progression of my arthritis. Either way, I am one handed now. My index finger on this hand is in the same shape as my middle finger on the left hand that I've mentioned in previous posts. After we finished shopping for our son, I made myself stay home for several days before Christmas so that I was able to get out and head over to the in-law's for dinner. That actually went pretty well. Once we got home I was not much feeling like going out anymore so I was back to camping on the couch, until one day...
January 6 I was scheduled for another doctor's appointment, however, on the way out the door my very helpful husband and I made a misstep and ended up falling off of the porch together. Well, he fell on top of me but quickly rolled off so he didn't hurt me worse. Luckily nothing was broken except my pride and self-esteem. However, I did hit my head on the sidewalk and jar every bone in my already aching body. Needless to say, I missed my appointment. The next day I was so sore that I opted to stay in bed all day. What I found out by doing this was that I actually felt a bit better in my bed than I did on the couch because I was able to move around more freely than being stuck in one position. So, that's where I've been camping ever since. I can sit up, lie down, stretch, prop up my legs or not, I can get as comfy as I want. I don't often sit up for long because it makes my legs ache something terrible, and as for getting up...I get to the bathroom alright, with a lot of help from hubby most of the time, and a lot of screaming/crying from pain ALL the time.
So whatever happened to the clinic getting my shots for me? I've gotten so much run-around that I don't really even know right now. I've been told everything from "your medicine was ordered Nov. 19, it takes 6 to 8 weeks to get here and should be in any time now"... to just last week I heard "sorry, I don't have a prescription for your medicine from one of our doctor's...it appears the prescription you have is from an outside doctor and we can't accept it, so I'll leave your chart with the doc and see if she'll write a 'scrip for you but she won't be in until Feb 3, so we'll let you know. Sorry, even if I had a whole case of the med here I couldn't give it to you." This is the point where I want to tear my hear out by the roots and start throwing things around the room!!! I just want to get better, but it doesn't seem anyone else desires the same, except for hubby who would manufacture the shots himself if he could, I know he would.
For now I'm just taking my Ibuprofen, for lack of a better prescription, still crying a lot, and pushing myself to do as much as I can without killing over. I managed to take a whole shower standing up tonight, without my shower chair; something I haven't done in two months...one small victory at a time!
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