Thursday, May 19, 2011

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.

Sunday, May 15, 2011

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..."

Sunday, May 8, 2011

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.



   

Wednesday, May 4, 2011

Ups and Downs

     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.

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 :)