A new direction

     After a long and bitter struggle, I finally received my medication on June 30th.  As per the doctor's orders, I took two shots the first day and one shot a week later (June 7th). I will now begin taking them once every two weeks.  I am one of the lucky people who does not have to wait forever to notice a difference with my meds.  I immediately started noticing a change, not only in my mental attitude and feelings, but also in my physical condition.  My husband also noted these same changes. 
     As I previously mentioned, I was approximately 85% covered in thick, flaky, itchy, and ugly psoriasis patches.  The patches have thinned quite a bit and are much less flaky than before; the percentage of coverage has dwindled maybe 5% already.  I am in shock that it's working this fast, but of course am not complaining!
     It is so amazing to me how many things we do everyday that are taken for granted until there comes a point that we can not do them.  For instance, I am thankful now that I can get dressed by myself, fastening a bra (in the back) and even putting on shoes that tie without assistance from my husband.  Just a few short months ago I spent days refusing to wear anything but a nightgown because it was just too frustrating to try to dress myself and too humiliating to have to ask for help all the time.  My hands would cramp and hurt when attempting to fasten my jeans, my arms ached to the point that I could not even begin to reach behind me to fasten a bra (I only own one front fasten kind), and bending down to tie my shoes, even while sitting, was nearly impossible.  There were days I even had to have assistance taking a shower.
     I am very grateful that I started feeling better when the weather warmed up, and even more so with my Humira.  There are still so many "little" things I look forward to being able to do: sitting on the floor to play with my son, playing outside for more than 5 minutes at a time, going shopping without having to use the wheelchair, wearing dark colored blouses and not worrying about flakes, and I am even looking forward to being able to properly shave my legs again!  I never asked for miracles, I don't want to run a marathon or lift a hundred pounds, or anything fancy...I just want to be able to say "Yes, Mommy CAN  do that with you," for a change instead of having to explain to him about pain and chronic fatigue, things a 3yr old should not have to try and understand.

Faith

I just received a phone call from the pharmacy that my medication has arrived and I can pick it up in 1 hour, YAY!  If I could I would be dancing around the room...give me a month or two LOL!  I think that nothing says it better about handling this long struggle than the words of the following song:

Faith of the Heart
Rod Stewart

It's been a long road
Getting from there to here
It's been a long time
But my time is finally near

And I can feel the change in the wind right now
Nothing's in my way
And they're not gonna hold me down no more
No they're not gonna hold me back

Cause I've got faith of the heart
I'm going where my heart will take me
I've got faith to believe
I can do anything
I've got strength of the soul
And no one's gonna bend or break me
I can reach any star
I've got faith
I've got faith
Faith of the heart

It's been a long night
Trying to find my way
Been through the darkness
Now I finally have my day
And I will see my dreams come alive at last
I will touch the sky
And they're not gonna hold me down no more
No there not gonna change my mind

Cause I've got faith of the heart
I'm going where my heart will take me
I've got faith to believe
I can do anything
I've got strength of the soul
And no one's gonna bend or break me
I can reach any star
I've got faith
Faith of the heart

I've known a wind so cold and seen the darkest days
But now the winds I feel, are only winds of change
I've been through the fire and I've been through the rain
But I'll be fine

Cause I've got faith of the heart
I'm going where my heart will take me
I've got faith to believe
I can do anything
I've got strength of the soul
And no one's gonna bend or break me
I can reach any star
I've got faith


I've got faith of the heart
I'm going where my heart will take me
I've got strength of the soul
And no one's gonna bend or break me
I can reach any star
I've got faith
I've got faith
Faith of the heart

It's been a long road

Oh, it's been long road

Light at the end of the tunnel

     I just received fantastic news.  My application for assistance has been approved and my Humira shots will be arriving on Wednesday or Thursday of this week!!!  My son's birthday is on Sunday (July 3) so I am getting a present that I can share with him; the gift of Mommy being able to be Mommy again instead of a wreck who always has to apologize for things she doesn't feel like doing.    

    I realize it's been a while since my last post; but I am back.  The past few weeks have been a mixture of both good and bad days.  Thankfully none of the days have been as bad as what I experienced over the winter.  I have been able to be out enjoying some sunshine which has helped my psoriasis keep itself in check (meaning that it has not cleared but has not gotten worse either).   When I've gotten a good amount of sun the plaques will start to thin and not be so itchy, some smaller spots even clear up altogether.  However, when I've not been able to be in the sunshine for a few days I can feel the plaques getting thicker and the itching becomes almost unbearable, even with my Triamcinolone cream.
    
     On the arthritis front, I have felt generally okay over the past few weeks.  I've been having trouble with my knees though, still feeling like someone has taken a sledge hammer to them.  I have been crocheting a lot more, creating a baby afghan for a very special friend, and the weirdest thing is that my fingers are not nearly as sore as before, but my left wrist aches a lot.  Not sure if that is the arthritis or a bad case of tendonitis.  Since being off of the Prednisone (about a month now) I have lost some of the weight I gained while taking it, which feels pretty darn good, and I know it helps my joints have less pressure on them.
I am thoroughly looking forward to getting back on the medication and being able to lead a somewhat normal life again...thank God for small miracles.

     I wanted to share with you a story that was recently shared with me.  While my blog is intended to help readers understand more about psoriasis and psoriatic arthritis, it is often difficult for people to grasp what it really means to have this type of disease.  No one can sum up what it is like better than Christine Miserandino did when she developed "The Spoon Theory".  Please read her story, and then take a moment to say a prayer for anyone you know who suffers from any type of sickness or disability. 

So tired...

...of pain, of plaques, of feeling miserable, and of course, of still waiting.  I waited two weeks before calling for a status update on my new Humira application and now it has been two weeks since I first called for the update and I can't even get anyone at the clinic to call me back.  I have to pick up a prescription tomorrow so I will be asking someone face to face about this because I am seriously starting to get upset.  I want some relief from all of this misery instead of having to put on a happy face for the world every day and try to pretend that everything is okay.  IT IS NOT!  I am to the point that most of the time I just want to scream.  I am constantly irritated and that upsets me because even little things drive me right up the wall.  It is not easy to deal with a husband and a 3 (in one more month) year old when all you feel like doing is snapping everyone's head off since you can't just go back to bed and ignore them. 
I would beg for Calgon to "take me away" except that I can't sit down in the bathtub anymore, and the shower chair isn't low enough for me to feel the benefits of soaking in a bath, so that would be pointless.  *sigh* 

Exercise: Empowering or Over-doing ?

  If you suffer from psoriatic arthritis, then you know where this post is going today.  Exercise is recommended to all arthritis patients because it helps keep joints moving, builds muscle, and fights fatigue.  Those all sound like exactly the prescription we are looking for, right?  The problem with exercise, for me personally, is that I tend to feel worse after it than before it.  Most of us are familiar with the pain we feel when we haven't worked out for a while and then start a new regimen; how would you like to feel that way everyday? That's pretty much what happens when I try to workout.
     When I am on my proper medication and can actually move about, I adore going to the gym and keeping track of the results of my hard work.  Times like now, however, when I have been off of the medication for over a year, I have no desire whatsoever to go anywhere near a gym.  The mere thought sends shivers down my spine.  Sure I have good days where a workout would be okay, I could do it.  If I did, I would probably not get out of my bed for the rest of the week.  That is how sore I would be.  My joints would hate me and my body would want to commit mutiny.
   At any rate, I shall not allow myself to sit around and become a vegetable.  This weekend my husband and I are going with my son to his first "marathon"...it is actually a run for little tots that is about a total of 3 blocks long.  While it isn't a huge distance, I know I shall be exhausted after; however, I want my son to know that Mommy is there for him and that I am not going to let this disease keep me down!
     What type of exercise do you do and does it help or hurt? While I realize that exercise can be very empowering, for those in our situation it can be drastically over-doing it at times, even when you only do the most minor things.

The Waiting Game

     When all else fails what do you do? Wait, wait, and wait some more.  The problem with this is that if you are an impatient person like I can sometimes be, it can drive you absolutely bananas! Also, if you are experiencing a massive outbreak of psoriasis along with a severe bout of your arthritis, and the thing they want you to play the waiting game on is the medication that will help you get better, it is worse than frustrating. 
     Once again I have been told that we must start this paperwork process over.  Now I have no idea how long it will be until things are straightened out; no clue as to when the medicine might actually be delivered. I have been waiting for 6 months, and have no other choice but to wait longer.  The depression I thought had been cleared up by the hopefulness that just maybe this time I would really get the medicine is returning.  I am frustrated, aggravated, upset, feeling helpless, and hopeless at times.  I try to find some positive in the fact that I'm not currently confined to the bed like I was for most of winter, I can still do some things.  But each day it feels like the pain is slowly increasing again, and the plaques are driving me insane.  I'm tired of looking like a leopard, itching all the time, having skin that flakes off I even breathe too hard, and I'm absolutely sick of the inflammation and pain.      
     Time to put on some music and let The Nitty Gritty Dirt Band remind me that "if you ever wanna see a rainbow...you've got to stand a little...rain..."

Options

     Okay, so I have a few new readers to the blog now and I am hearing from some of you that you are not aware of all your options out there.  If you have psoriasis and you think you may have psoriatic arthritis, PLEASE talk to your doctor about what treatments are available to you!  A regular medical doctor or a dermatologist can help you find topical medications that control psoriasis plaques, but they will most likely want to refer you to a Rheumatologist, especially if the condition is serious.
     There are many options out there to help with this disease.  If you think this is something you may have, I urge you to be proactive and speak to your doctor about it.  Do not let them brush off your symptoms or simply tell you take some Tylenol (or Ibuprofen) and it will be better.  Those things may help temporarily, but I know from experience that over-the-counter and even prescription meds can stop working after a time.  I was told at one point to take Aleve (or the generic naproxen sodium) "until it stops working or you have to take more than what you're taking now (4 pills per day). Then we will see about getting you on something different."  At the time I was not as savvy about researching things and knowing what my options were, nor did I do a good job of speaking up for myself and making sure my doctor understood how my condition really affected me.  Due to this, I went almost 10 years from the onset of my symptoms to an actual diagnosis and finding some real help.  I can not tell you where I would be if I had gotten help sooner, but I can tell you that I do not think YOU should wait so long to get answers. 

The National Psoriasis Foundation is a fabulous resource you can use to find out about this disease and decide exactly what you should tell your doctor.  Their website is http://psoriasis.org and this specific page http://psoriasis.org/NetCommunity/Page.aspx?pid=324 will give you more information about psoriatic arthritis.

     If I can be of any assistance or answer any questions, please feel free to comment below or e-mail me.