Saturday, November 6, 2010

Wow!

Thank you Dennis Jernigan for reminding me that "This is My Destiny"!!!  It's funny how God works, and sometimes almost scary how He smacks us back into reality, LOL! 

So I was actually feeling quite well for a change today, and while I was washing up some dishes I decided to turn on my mp3 player.  Listening to some spiritual music is always a mood lifter and a great way to pass the time during mundane activities.  Anyway, the first song that came on was "I Can Only Imagine" by Mercy Me, and that really got me to thinking.  When I get to Heaven maybe I will dance, maybe I will take long walks with God, or even run to be by His side...all things I currently can not do; it will be fantastic!  This lead me to thinking about an amazing friend who passed away from breast cancer back in early 2005, which also lead me to think about Dennis Jernigan's song, since both were played at her celebration of life.
     It's not so much the lyrics of the Jernigan song that got to me, but the title itself.  The realization began to take shape in my mind (which I knew all along, but had gotten away from wanting to believe I think...) that no matter what happens in my life, this is MY destiny!  As long as I believe in God and follow His guidance then I am fulfilling the destiny He has in store for me.  Now, whether this feels like a great way to live or not, with all the pain and tragedy I've had to deal with and whatever more may lay in store, there is a reason for it all.  If that reason is simply to help someone else realize that they are not alone in their struggles, that someone out there knows how they feel, which is the purpose of this blog, then so be it!  If that reason is to remind others that we are never alone when we are on God's team, then YAY!  If that reason is to show others the love of Christ, the awesome power of His redeeming blood, the mercy and grace He bestows on us through salvation, and the unconditional love He has for us, then I say HALLELUJAH! 
Whatever the reason may be, I will give my worries, my fears, my anger, my frustration, my depression, my pain, and my life to God...they are no longer mine, but are in His hands...and I will remember through it all, that THIS IS MY DESTINY! :) 

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!

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...

Saturday, July 31, 2010

The PsoriMom Story

     The intention of this blog is not only to spread awareness, but also to help others who have psoriasis understand that they are not alone in dealing with this devastating disease.  So today start getting personal and talking about my own case of psoriasis and psoriatic arthritis. 

    First let me explain a bit about psoriatic arthritis, since I haven't mentioned it much so far.  Psoriatic arthritis is pretty much like most other forms of arthritis, in that it causes painful swelling of joints and often extreme stiffness.  The main difference between this and other forms is that along with the arthritis, come the red, scaly patches of dry skin.  Psoriatic arthritis is painful, often debilitating, and exhausting.  When your joints are swollen, it decreases the room that oxygen has to flow through your body, which causes poor circulation and stiffness.  Imagine you have ordered a milkshake and instead of the nice, wide straw they normally give you, they say, "I'm sorry but all we have are these" and they hand you a regular tiny drinking straw. You will likely have a difficult time drinking the milkshake that way.  This is how I simulate the difference between having good circulation days where the joints are not swollen and oxygen has plenty of room to flow, versus the bad days where there is a lot of swelling and no room.  Also, when your body is not getting proper oxygen throughout, it works harder to try and force the air through, and this leads to feelings of fatigue or exhaustion.

Okay, so some of you may be saying to yourselves, "what does all of this have to do with you? (me, the writer, not you the reader)".  It is time to tell my story.   I had my first bout of psoriasis as a child in middle school.  I was 11 years old and  I developed a patch of dry skin on my right arm.  Having no idea what it was, other than that it was terribly itchy, I tried lots of lotions and itch creams.  Pretty soon it spread down from my elbow to my whole forearm and then to my left arm as well.  The patches weren't terribly scaly but the itch nearly drove me crazy.  At some point my arms started being affected by water.  Everytime I would try to wash dishes (one of my chores since we had no dishwasher) I would wind up in pain. It got to the point that even a bath was miserable.  My arms felt like they had been set on fire.  My parents could not afford to take me to the doctor.  Everyone we knew gave us suggestions on what it might be and how to treat it; they even had me take small doses of the medicine my dad was given for shingles, and one uncle suggested that we try a hemorrhoid cream to shrink the spots.  I was not amused with him.

    Eventually it was time for church camp that summer, and one of my favorite things to do there had always been to help out in the kitchen. I loved being around the ladies as they chatted and cooked meals for all the campers from our church.  I was always allowed to help with meal prep and I would gladly volunteer to help with cleanup afterward.  However, this year, the pastor's wife (and my very good friend) refused to let me do dishes since she knew how the water affected my arms.  Distraught by not being allowed to help, I forced myself to fill my time with outdoor activities instead.  Within just a few days I was surprised to find that my arms had totally cleared up!  I immediately attributed it to having spent so much time in the sunshine, but I did  not know why or how the sun would have helped; I was still positive that it had, though.

   So fast forward a few years and now I am 17.  I woke up one morning with a problem on my right foot.  Every time I put my foot down on the floor there is a sharp pain in my heel.  After a couple of days my mom thought it may be a heel spur.  I limped around on it for a while and about 4 days into it, my ankle starts to hurt.  Day 5 and it is my right knee as well.  By the time two weeks has gone by, both of my ankles and feet were hurting.  I tried every over the coutner (OTC) pain med that we could find.  I progressed to soaking my feet in warm water and Epsom salts for half hour periods two to three times a day.  Once again we could not afford to see a doctor.  I started sleeping on a mattress on the floor so that I could roll out of bed and crawl where I needed to go because I could not walk, it was simply too painful.  I missed two months of school.   Finally one day it was so bad that my mother took me to the emergency room.  Five hours and every imaginable test later, the doctor said he could see absolutely no explanation or cause for this issue.  He did ask me one question that I thought was strange though.  He wanted to know if I had any patches of dry skin.  I gave him an honest "no". The very next day I found a small patch of dry skin on my left knee, and for some reason I really wished it had been there the day before so that the doctor could have seen it, though I didn't know why.

     To make this long story shorter, the patches continued to increase, and some grew exceedingly large.  My scalp, around my ears, on my neck and my knees were the areas affected.  It was so bad on my scalp that I would wash my hair three times a day: morning, right after school, and right before bed, because the only time my head didn't itch was when it was wet.   It was about a year later that I discovered hydrocortisone cream.  I realized that it helped clear up the scales around my ears and on my neck.  I was super glad to find it!  But, even though my scales were gone, I still had a huge red rash around my neck, nothing seemed to help with that.  During this time I also developed the arthritis I mentioned earlier. 

     I finally found an OTC pain medicine to help deal with the arthritis, somehow miraculously thanks to the uncle with the hemorrhoid cream suggestion (LOL).  I was finally diagnosed with psoriasis in 2001 at the age of 23.  It wasn't until 2006, at age 27, that I was diagnosed with psoriatic arthritis. In early 2007 I was put on HUMIRA® (more on this tomorrow) to help slow down the degeneration and damage caused by the P.A., and a medicine called Salsalate, for pain.  I think I was one of the happiest people ever to finally have a diagnosis and know that even though there is no cure (as of yet) there are ways to help manage this disease.

Thursday, July 29, 2010

How it feels

     There are many sides to living with psoriasis.  The first thing that I had to do when I received my diagnosis and started learning more about this disease was to change the way I thought.  Before, I had been trying to deal with the problem and figure out how to get rid of it.  When I was forced to realize that there is no cure for psoriasis, I decided it was time to learn how to live with it instead of just fighting it.  This can be a difficult thing for some people to do, and I am no exception.
     It was not exactly thrilling to hear that my body would likely be forever covered with bright red patches of skin that often grow thick, white scales which flake off, and that these patches can occur on pretty much any region of the body.  Needless to say, I was less than amused at the thought.  This is where the emotional aspect of psoriasis comes in to play.
     Many people who live with this disease become frustrated, upset, self-conscious, develop low self-esteem, even become depressed.  We worry about what our "problem" looks like to other people.  We often concern ourselves more with what everyone is thinking when they see us, than we do with how we should be seeing ourselves.  People who know little about psoriasis really frighten us; they frequently cause us to skip social functions and even pass on job interviews/opportunities.  Too many people are afraid of the unknown and this causes them to react negatively, with or without meaning to do so.  When we see these kinds of reactions it makes us feel unwanted, useless, helpless, sometimes even hopeless.

What can you do to help ease our frustrations?
      When you see someone you think may have psoriasis, please remember that it is NOT contagious.
      Try not to make any negative or reproachful glances at the person, that will only make them feel even more self-conscious.
      If you are curious, ASK!  Personally, I would much rather that someone ask me about my psoriasis so that I can explain it to them and help them feel more comfortable being around me, than for them to give me looks of sympathy or fidget nervously in my presence.    
     Most importantly, accept us for who we are, not for something we did not ask to have.

What is Psoriasis?

If you have psoriasis then you already know the effects it can have on a person.  If you do not have psoriasis, I hope that the information you find here will help you to better understand what millions of people like myself deal with in battling this disease. 

     Psoriasis, as defined by The National Psoriasis Foundation, "is a chronic, autoimmune disease that appears on the skin. It occurs when the immune system sends out faulty signals that speed up the growth cycle of skin cells." There are five different kinds of psoriasis that can affect any area of a person's body. What everyone should know, however, is that psoriasis is not contagious in any way, no matter which of the five types a person has.

The Five Types:

1. Plaque  (most common)
This type of psoriasis causes patches of red, inflamed skin covered by white scales that tend to flake off. It most often occurs on the head, knees, elbows, or small of the back.

2.  Guttate
Often appearing in childhood, this particular type leaves small red spots on the arms, legs,and bottom. The spots are not as large and the scales not as thick as with plaque psoriasis.

3.  Inverse
Found in the folds of the skin, such as under the arms or breasts, inverse psoriasis does not usually have scales but instead leaves smooth red patches that are often irritated by sweat, clothing, or the simple rubbing of skin on skin.    
4.  Pustular
Bright red skin and blisters containing a noninfectious pus (filled with white blood cells) are the main characteristic of this type. They can be found covering one area of the body, such as the hands, or may spread to the entire body.
5.  Erythrodermic
This is the most dangerous form of psoriasis.  Due to high inflammation, increased heart rate, fluctuating body temperature, and severe pain and itching, anyone having an episode of erythrodermic psoriasis should seek immediate medical attention.  This particular type affects most of the body and the scales come off in sheets rather than flakes like most other types. 
 Please visit the National Psoriasis Foundation website at, www.psoriasis.org to learn more.