Thursday, July 21, 2011

Support

     My husband and I attended a seminar sponsored by the National Psoriasis Foundation and entitled "More Than Skin Deep", in Washington, D.C. last weekend (July 16th).  At this seminar we met some truly wonderful people and gained valuable information for our fight against this disease.  Not only did we learn about the disease itself, but also about treatment and support options, as well as had the opportunity to meet others who suffer from this disease.  We are both very glad that we went.
      Support for people who have psoriasis and psoriatic arthritis is very, very important.  That is one of the main reasons I started this blog, along with reaching out to spread awareness to those who do not understand the kind of struggles that someone with this disease faces.  In addition to my blog, and the newly developed line of awareness jewelry, I am in the process of starting a local psoriasis support group.  I really feel that there is not enough that I can do to help find a cure for this.  I struggled for so long without any answers, and have been dealt both good and bad cards along the way since being diagnosed. It is by the grace of God that I am where I am today.  I want others to know that they are not alone in this fight, to show them that there is someone who understands their pain, but also revels with them in their joy over the smallest of victories. 
     I will do everything in my power to help find a cure.  My husband and son have both agreed to join me for an NPF Walk for Psoriasis, in D.C. on September 17th.  Between now and then we will be working on various fundraising efforts for the walk.  Stay tuned to your inbox for more info. :)

Saturday, July 9, 2011

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.