Friday, November 5, 2010
Responsibility
Today stinks...in a whole lot of ways. Hubby had a job he needed to do, out of town. It was going to be the first time he left me alone with Alex in several weeks, since my problem started getting really bad. Sometime in the night I got worried, so I voiced my concerns to hubby this morning. I am not sure that I should be left alone with a 2 year old who constantly gets into things, can't sit still for more than 5 minutes, is potty trained but sometimes needs help and has to get there in a hurry, and who is going through a growth spurt and wants something to eat/drink every 10 minutes. The sad part of this is that means I am not fully capable of taking care of my own son :( It's a horrible day when you come to this kind of conclusion.
Thursday, November 4, 2010
Immobility, Realization, and Depression
So it's been a while since my last post, and there's definitely a good explanation. This disease is kicking my butt! Yes, you heard me right...no matter what I do it seems to be an epic fail.
The last time you heard from me I was waiting to get back on my Humira shots to hopefully get rid of some of this pain and slow down the progression of my arthritis. Well, so far that's been a no go. While I did get in to see my doctor, and I did get my part of the paperwork sent in to Abbot for their patient assistance program, my doctor did NOT complete his part. See, when they send you the paperwork they send both your part and the part the doctor has to fill out; they also send the same pages to your doctor. I don't even know how to say what I think about my doctor, because he got it in his head (he did this the first time around, too even though I fully explained it to him!) that since he had both parts of the paperwork he had to wait until I came in for my next appointment so he could fill my part out with me. It never crossed his mind that I am an intelligent woman capable of handing MY end of things on my own...so my part has been sitting with the company now for over a month, just waiting on a doctor's prescription and signature so that I can get my shots. Grrrrrrrrrrrrrrrrrr!!!
In the meantime you may be wondering what has happened to me health wise... Around the time of my last post I broke down and bought myself a cane from Wal-Mart. Some days it is great and other days it doesn't help because it's my right side that needs help, which means putting the cane on the left and that is where I have the problems with my finger, so that makes it difficult to grasp the cane. Anyway, the pain in my right knee has increased dramatically; I can not even bend my knee when I walk most of the time, it's like trying to walk with a cast and no crutches. Getting in and out of the shower is quite difficult, and so is actually taking a shower. When you can barely move without pain and can't stand up for long it's rather difficult to accomplish certain tasks. We are now looking at getting a shower chair. :( I have also made it to the point that I now have to use a wheelchair when we go shopping because if I don't, I have to rush us through the store so I can get off of my feet, and when I do get off of them they are swollen, turning blue/purple and hurt immensely. On top of all of this, the severity of my psoriasis itself has increased. I am now 85% covered in red/scaly patches.
All of this has put me in a rather bad mood. Lately I spend most of my days sitting around feeling miserable and crying. I cry when I hurt and I can't get out of bed, or the chair, or off the couch. I cry when I can't stand in my kitchen for 10 mins to cook dinner or wash dishes; when I don't have the energy to take a shower, when I can't pick up my son or hold a book up long enough to read. I cry when I can't bend over to get laundry out of the dryer, or summon up the energy to fold it if someone else takes it out. I cry because I don't understand, I don't think it's fair and I often wonder if it will ever get better.
So the realization part of today's post comes from this last statement. I have now realized that I've been hoping for a miracle when I finally get back on my shots, and I have also realized that I may very well be setting myself up for a letdown. While the Humira may offer some relief, this time around due to the amazingly fast progression of my disease, it may not work as well as it did in the past. This afternoon when I woke up from a nap, I began to wonder what is going to happen if things don't get better. What if this is the best I will be from now on? What will I do, how will I manage, what effect will this have on my marriage, and on my son, how will he be taken care of should this somehow turn out to be a fatal issue? That, I think, is my biggest fear. I've never heard of arthritis being fatal, but with all of this pain it leads to concerns about hip or knee replacements, hand surgery, etc... and it just seems like there is no end in sight for the pain. How does one go on like this for years?
Well, even though it doesn't seem like it, I'm trying to keep a positive attitude and hope for the best. Please keep me in your prayers, and my family who has to deal with me dealing with this..they need it!
P.S. I want to say a great big THANK YOU to my husband who continues to support me throughout all of this; who constantly takes my place making dinner, doing laundry, taking care of the baby, helping me get around and bringing me things when I can't get them myself; and who consistently holds me, caresses me, shows me affection, and tells me how much he loves me. I LOVE YOU, Sweetheart!
The last time you heard from me I was waiting to get back on my Humira shots to hopefully get rid of some of this pain and slow down the progression of my arthritis. Well, so far that's been a no go. While I did get in to see my doctor, and I did get my part of the paperwork sent in to Abbot for their patient assistance program, my doctor did NOT complete his part. See, when they send you the paperwork they send both your part and the part the doctor has to fill out; they also send the same pages to your doctor. I don't even know how to say what I think about my doctor, because he got it in his head (he did this the first time around, too even though I fully explained it to him!) that since he had both parts of the paperwork he had to wait until I came in for my next appointment so he could fill my part out with me. It never crossed his mind that I am an intelligent woman capable of handing MY end of things on my own...so my part has been sitting with the company now for over a month, just waiting on a doctor's prescription and signature so that I can get my shots. Grrrrrrrrrrrrrrrrrr!!!
In the meantime you may be wondering what has happened to me health wise... Around the time of my last post I broke down and bought myself a cane from Wal-Mart. Some days it is great and other days it doesn't help because it's my right side that needs help, which means putting the cane on the left and that is where I have the problems with my finger, so that makes it difficult to grasp the cane. Anyway, the pain in my right knee has increased dramatically; I can not even bend my knee when I walk most of the time, it's like trying to walk with a cast and no crutches. Getting in and out of the shower is quite difficult, and so is actually taking a shower. When you can barely move without pain and can't stand up for long it's rather difficult to accomplish certain tasks. We are now looking at getting a shower chair. :( I have also made it to the point that I now have to use a wheelchair when we go shopping because if I don't, I have to rush us through the store so I can get off of my feet, and when I do get off of them they are swollen, turning blue/purple and hurt immensely. On top of all of this, the severity of my psoriasis itself has increased. I am now 85% covered in red/scaly patches.
All of this has put me in a rather bad mood. Lately I spend most of my days sitting around feeling miserable and crying. I cry when I hurt and I can't get out of bed, or the chair, or off the couch. I cry when I can't stand in my kitchen for 10 mins to cook dinner or wash dishes; when I don't have the energy to take a shower, when I can't pick up my son or hold a book up long enough to read. I cry when I can't bend over to get laundry out of the dryer, or summon up the energy to fold it if someone else takes it out. I cry because I don't understand, I don't think it's fair and I often wonder if it will ever get better.
So the realization part of today's post comes from this last statement. I have now realized that I've been hoping for a miracle when I finally get back on my shots, and I have also realized that I may very well be setting myself up for a letdown. While the Humira may offer some relief, this time around due to the amazingly fast progression of my disease, it may not work as well as it did in the past. This afternoon when I woke up from a nap, I began to wonder what is going to happen if things don't get better. What if this is the best I will be from now on? What will I do, how will I manage, what effect will this have on my marriage, and on my son, how will he be taken care of should this somehow turn out to be a fatal issue? That, I think, is my biggest fear. I've never heard of arthritis being fatal, but with all of this pain it leads to concerns about hip or knee replacements, hand surgery, etc... and it just seems like there is no end in sight for the pain. How does one go on like this for years?
Well, even though it doesn't seem like it, I'm trying to keep a positive attitude and hope for the best. Please keep me in your prayers, and my family who has to deal with me dealing with this..they need it!
P.S. I want to say a great big THANK YOU to my husband who continues to support me throughout all of this; who constantly takes my place making dinner, doing laundry, taking care of the baby, helping me get around and bringing me things when I can't get them myself; and who consistently holds me, caresses me, shows me affection, and tells me how much he loves me. I LOVE YOU, Sweetheart!
Sunday, August 22, 2010
Painful days
There are days when psoriatic arthritis is not really an issue; days when you wake up in little to no pain, and you feel like you can do anything you want. Then...there are days like today. I woke up this morning somewhere around 6am because my lower back has decided that I am not allowed to sleep in my bed anymore. It has been giving me problems for a couple of weeks now where it starts hurting a few hours after I lie down and then only thing that clears up the pain is to get out of bed. I usually wind up walking around the house a bit, then camping out in hubby's recliner because it leans back very well and is actually quite comfortable. It helps stretch my back out so that I can fall back to sleep; the downfall to that is not being able to turn over in the chair, which makes everything else stiff and sore by the time I wake up.
So I woke up this morning in the chair, only to discover that my left hand (the one that has been swollen so bad lately) was extremely sore. Now, just so that you can fully understand what I mean by this... if I held my hand up for you to breathe on it, and you blew air across the sore joint, I would likely scream bloody murder. That was the seriousness of the pain. A soak of the hand in a bowl of hot water, two Iburpofen, and eventually a hot shower, later...I can now bend the finger a tad before screaming, but just a tad.
It's another of those days that makes it easy to want to yell at God and blame him for giving me this disease, to be mad at the world and yell at them because I don't understand why I have to go through this, and to just go back to bed and spend the whole day crying. However, I have a child who needs to be fed, played with, entertained, and taught. I also have a husband who needs loved, fed, and sometimes entertained, lol. I have laundry and dishes that need done, crochet projects to finish, this blog to write, and probably hundreds of other things if I look around. So, here I am, typing to you with one hand while holding the other up so that it's above my heart for better blood flow, and because for some odd reason it just feels better up here on my shoulder.
To my faithful readers...I hope you are having a better day than I am :)
So I woke up this morning in the chair, only to discover that my left hand (the one that has been swollen so bad lately) was extremely sore. Now, just so that you can fully understand what I mean by this... if I held my hand up for you to breathe on it, and you blew air across the sore joint, I would likely scream bloody murder. That was the seriousness of the pain. A soak of the hand in a bowl of hot water, two Iburpofen, and eventually a hot shower, later...I can now bend the finger a tad before screaming, but just a tad.
It's another of those days that makes it easy to want to yell at God and blame him for giving me this disease, to be mad at the world and yell at them because I don't understand why I have to go through this, and to just go back to bed and spend the whole day crying. However, I have a child who needs to be fed, played with, entertained, and taught. I also have a husband who needs loved, fed, and sometimes entertained, lol. I have laundry and dishes that need done, crochet projects to finish, this blog to write, and probably hundreds of other things if I look around. So, here I am, typing to you with one hand while holding the other up so that it's above my heart for better blood flow, and because for some odd reason it just feels better up here on my shoulder.
To my faithful readers...I hope you are having a better day than I am :)
Sunday, August 15, 2010
Support
One of the toughest things about having psoriasis is how self-conscious it can make a person. That is why I believe that having a support system is vital. Surround yourself with people who understand how you feel and who are willing to help you think positive when you feel angry at the world. It really helps!
My Mom was a good person for understanding my disease and even explaining it to others. She helped me find a doctor who could finally give us a diagnosis, and encouraged me to take my meds so that I would feel better. My husband is also a great supporter. He has learned a lot about psoriasis in the time we have been together and has even made donations of time and money to help further research for the cause. This is fantastic for me because I know that when I am having really rough days, he truly understands what I'm dealing with and he is there to help me get through it. He lets me cry on his shoulder, and even throw the occasional "I don't understand why I have this and it's not fair!" tantrum. He reminds me to take meds, helps me out when my arthritis doesn't allow me to lift things or move around well, and even gives me pep talks to help build my self-confidence.
If you have psoriasis and you don't have a support system, you should really think about building one...and please, consider me your first member! :)
My Mom was a good person for understanding my disease and even explaining it to others. She helped me find a doctor who could finally give us a diagnosis, and encouraged me to take my meds so that I would feel better. My husband is also a great supporter. He has learned a lot about psoriasis in the time we have been together and has even made donations of time and money to help further research for the cause. This is fantastic for me because I know that when I am having really rough days, he truly understands what I'm dealing with and he is there to help me get through it. He lets me cry on his shoulder, and even throw the occasional "I don't understand why I have this and it's not fair!" tantrum. He reminds me to take meds, helps me out when my arthritis doesn't allow me to lift things or move around well, and even gives me pep talks to help build my self-confidence.
If you have psoriasis and you don't have a support system, you should really think about building one...and please, consider me your first member! :)
Thursday, August 5, 2010
Photos
First of all today, I would like to thank April Burgess for the wonderful new banner she designed for the blog! She really captured what I'm trying to do here and it is beautiful. Thank you April!!!
Today I going to show you some of the spots I currently have, so you can get an idea of what psoriasis looks like. Keep in mind that this is a tiny sampling; these spots cover most of my stomach, back, and scalp.
These are on my stomach, left side.
Tuesday, August 3, 2010
Swollen
Today I woke up with my left hand hurting. Well, actually the pain is mostly centered around my middle finger; I couldn't even bend it when I got out of bed. This is highly aggravating because I work with my hands all day long. I use them to do numerous household tasks, to pick up and hold my son, to play with him, and to get all important work done. It's kind of hard to run a crocheting business when you can't even hold a hook!
So I took two aspirin and a water pill to see if I could pull some fluid off of the joint and ease the pain. The aspirin did nothing, but the water pill seems to have helped. I finally managed to take a shower, and even did some dishes. The dishes were nice because I got to soak my hand in the hot water which felt really good. Now my finger is about 2/3 of the way bendable and I'm trying to get real work done. Will probably be taking something stronger for pain, as soon as I find it...
So I took two aspirin and a water pill to see if I could pull some fluid off of the joint and ease the pain. The aspirin did nothing, but the water pill seems to have helped. I finally managed to take a shower, and even did some dishes. The dishes were nice because I got to soak my hand in the hot water which felt really good. Now my finger is about 2/3 of the way bendable and I'm trying to get real work done. Will probably be taking something stronger for pain, as soon as I find it...
Sunday, August 1, 2010
Today
All week I have told you about the basics of psoriasis and yesterday I told you my story. Today I want to share with you how all of this affects me. As I have mentioned, this disease is not easy to live with, quite the contrary.
I was put on a medicine called HUMIRA® to help with both the arthritis and the psorasis spots. This medication comes in the form of a shot that I administer to myself once every two weeks. Within a few weeks of being on the medication, my psoriasis was completely cleared up! I was so excited that I cried...my mom nearly cried too because I had dealt with it for so long. I was thrilled to have soft, clear skin again instead of rough, dry, scaly, itchy skin. My head was completely clear and I could wear dark colored shirts again without the fear of having white scales all over them. It was simply amazing.
There is one main problem about being on this medication; the cost. When my doctor first told me about it, he told me it would cost $1,500 per month and that I could apply to the company for assistance in getting it since I had no insurance. That was when I saw a doctor in Ft.Smith, Arkansas. Here in Virginia, I was told by a local CVS pharmacy that the medicine is $9,000-10,000 per month! Not only is the medicine expensive, but being on it requires periodic checkups with the rheumatologist so that he can take x-rays of my joints and see whether or not the medicine is working to slow down the process of degeneration. Luckily, Abbot, the company who makes HUMIRA® has an excellent patient assistance program, and I've been consistently able to get my medication through them, for FREE! Another miracle, in my books :)
Now, that sounds pretty good, the medicine works and I can get it for free. It should be great, but over the past few years there have been a few setbacks. First, I had to go off of the medicine when I got pregnant with my son in Nov. 2007. HUMIRA® is a lifetime maintenance medication, meaning that once you are on it, you have to stay on it or your symptoms will come back. So by the time my son was born at 7.5 months, my symptoms were slowly starting to reappear. When he was 3 months old I was able to go back on it, and boy was I glad. I was able to stay on it for a full year, until, due to financial issues, I had to stop. It was time to renew my application with the patient assistance program, and in order to do that I have to see the doctor for a new prescription. This means that I will have to get x-rays also, and there's just been no way we could afford that. As of right now, I have been off of the medicine since February of this year.
I am now back almost to where I was before I started the shots. I am once again covered in red spots, on my stomach, back, and a few on my arms. My scalp is terrible and I want to wash my hair a hundred times a day (I don't, but it sure would feel better). We are looking at options for what will be the quickest and best way to help me get back on the medicine. But in the meantime I feel blah... I am exhausted all the time, my joints are really swollen to the point I can't even close my left hand anymore, and I feel itchy and yucky all day long. I have topical medicines that I can use on my spots but they do not clear them up, only help them stop itching for a little bit. If I don't take a shower I can't put the meds on, and there are some days I don't feel like getting a shower until the afternoon, but if I try to not take one for a whole day then I get grouchy and miserable and I will refuse to go out of the house at all. This can be frustrating not only for me, but for my family as well. They often have to wait on me to finish my shower before we can go out, which means instead of five minutes to get ready it will take us over half an hour. If I don't get my shower though, I feel so nasty, just itchy and dirty, and even though no one can really see my psoriasis right now, I feel as though they can see every little spot and flake and that I'm being judged by them. This is not a fun way to live...
I was put on a medicine called HUMIRA® to help with both the arthritis and the psorasis spots. This medication comes in the form of a shot that I administer to myself once every two weeks. Within a few weeks of being on the medication, my psoriasis was completely cleared up! I was so excited that I cried...my mom nearly cried too because I had dealt with it for so long. I was thrilled to have soft, clear skin again instead of rough, dry, scaly, itchy skin. My head was completely clear and I could wear dark colored shirts again without the fear of having white scales all over them. It was simply amazing.
There is one main problem about being on this medication; the cost. When my doctor first told me about it, he told me it would cost $1,500 per month and that I could apply to the company for assistance in getting it since I had no insurance. That was when I saw a doctor in Ft.Smith, Arkansas. Here in Virginia, I was told by a local CVS pharmacy that the medicine is $9,000-10,000 per month! Not only is the medicine expensive, but being on it requires periodic checkups with the rheumatologist so that he can take x-rays of my joints and see whether or not the medicine is working to slow down the process of degeneration. Luckily, Abbot, the company who makes HUMIRA® has an excellent patient assistance program, and I've been consistently able to get my medication through them, for FREE! Another miracle, in my books :)
Now, that sounds pretty good, the medicine works and I can get it for free. It should be great, but over the past few years there have been a few setbacks. First, I had to go off of the medicine when I got pregnant with my son in Nov. 2007. HUMIRA® is a lifetime maintenance medication, meaning that once you are on it, you have to stay on it or your symptoms will come back. So by the time my son was born at 7.5 months, my symptoms were slowly starting to reappear. When he was 3 months old I was able to go back on it, and boy was I glad. I was able to stay on it for a full year, until, due to financial issues, I had to stop. It was time to renew my application with the patient assistance program, and in order to do that I have to see the doctor for a new prescription. This means that I will have to get x-rays also, and there's just been no way we could afford that. As of right now, I have been off of the medicine since February of this year.
I am now back almost to where I was before I started the shots. I am once again covered in red spots, on my stomach, back, and a few on my arms. My scalp is terrible and I want to wash my hair a hundred times a day (I don't, but it sure would feel better). We are looking at options for what will be the quickest and best way to help me get back on the medicine. But in the meantime I feel blah... I am exhausted all the time, my joints are really swollen to the point I can't even close my left hand anymore, and I feel itchy and yucky all day long. I have topical medicines that I can use on my spots but they do not clear them up, only help them stop itching for a little bit. If I don't take a shower I can't put the meds on, and there are some days I don't feel like getting a shower until the afternoon, but if I try to not take one for a whole day then I get grouchy and miserable and I will refuse to go out of the house at all. This can be frustrating not only for me, but for my family as well. They often have to wait on me to finish my shower before we can go out, which means instead of five minutes to get ready it will take us over half an hour. If I don't get my shower though, I feel so nasty, just itchy and dirty, and even though no one can really see my psoriasis right now, I feel as though they can see every little spot and flake and that I'm being judged by them. This is not a fun way to live...
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