Saturday, May 10, 2014

A walk through the past and into the future!

Okay, so the story begins back in high school working in the kitchen at the local nursing home.  I worked there for four years in the kitchen.  I remember having small issues with psoriasis but back then I figured it was due to working with bleach water without gloves.  I guess the arthritis didn't start until after graduation and was probably brought on by working as a certified nursing aide.  I loved the work but it was so very hard on my back!  I was also bowling every week with a friend and then with my husband and after a couple of years, I realized it was bothering my thumb and middle finger.  My knuckles tend to swell up and stay that way for a few days!  I finally decided to quit bowling on leagues about twenty years ago.  I missed now bowling but I couldn't take the pain any more. 

I guess it has been about fifteen years or so ago, I was realizing that I was always tired! Nothing I did helped. I tried less caffeine, Benedryl at night, going to bed earlier than normal, etc.  Nothing worked.  I finally went to the doctor (repeatedly) and nothing came up.  Eventually the family doctor suggested a rheumatologist.  She ran a bunch of tests and my ANA levels came up positive.  It is a low positive but it is still positive.  Tiredness, sleepiness, sleeplessness, sensitivity to sun, and even what they call a "butterfly effect" across my cheeks. It looks like I am blushing or overheated when I'm not.  Lupus and psoriatic arthritis are both autoimmune diseases.  They can be brought on by infections, illness, or even stress. Around the time the symptoms showed up, we had ten funerals in less than two years!  This includes my sister, two of my grandparents, my husband's mom, grandmother, and a few other people that were close to us or to our family.

Somewhere in these time frame I also started seeing a dermatologist about my skin.  It was breaking out and getting scaly looking on my elbows, hands, sometimes the knees, (front or back), back and ears.  Turns out that not only do I have the psoriasis but I have eczema!  The pictures below show some of the bad spots I have right now. My hands are the worst right now.  If you look closely, you can see my ring finger is red right near the nail.  The skin was recently infected because of a major breakout.  The nail was starting to loosen up because of the infection.  I was an antibiotic for ten days and the nail is slowly coming off. Oh yay! 
My fingers crack all the time.  So if this Enbrel works, it will be so nice to have normal fingers again! Imagine trying to crochet, sew, open things or recently even writing a check was a problem! My thumb was cracked and it split even wider as I tried to write. I ended up having to use my card, and put the check in my wallet to destroy later!

One of my goals is to update my pictures.  I am using the Enbrel twice a week for now, and then it goes to once a week.  I know have to give my self an pre-measured injection! Weird but hey if it works!

So the doctors think I have eczema, psoriasis, psoriatic arthritis, and lupus. Oh, and around Christmas, my asthma kicks in big time due to folks bringing in real trees into their houses. In my case, the fake ones work! I don't have to water it either!  Some days I have trouble getting out of bed. I wake up almost every morning feeling tired like I didn't sleep.  Most days, I hurt somewhere. The medication I take on a normal basis is Neurontin and Plaquenil.  Due to the meds I take I have to have an eye exam every six months which includes my eyes being dilated.  Blahhh, not my favorite thing to do! I get blood work at least twice a year to make sure my levels are staying where they need to be.

I know it causes me problems playing with my grand-daughter but I know that she won't always be the adorable two year she is! I want to be able to keep up with her and some days I just have to suffer a little and remember to take Advil or Tylenol!

 I am not complaining, just hoping I can help someone else realize they aren't alone! I have had a number of people pray for me and I greatly appreciate that. I know that I am going through this for a reason, but for this time in my life I am okay with not knowing what God has in mind!  I look at two of my friends who are dealing with cancer, and in different ways fight for their life everyday, and realize this is doable. 

Please feel free to email me with questions or leave a comment below.  Thanks!