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 :)

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! :)

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.


This is the right side of my stomach.

This is my scalp, right at the hair line. 

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...

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...