Saturday, December 29, 2012

New Life not just New Year

Happy Holiday's from Phoenix!  I hope everyone enjoyed their chosen celebrations and festivities.  I am really having a great time with my family.

With the new year quickly approaching I know many of us make New Year's Resolutions.  I've never been one to make them.  I believe every day is a good day to start fresh and move forward so making a point of doing it because it happens to be January 1st seems silly to me.  This is compounded by the fact that most people have abandoned their resolutions by the middle of January.

All that being said I've done some thinking the last few weeks.  This past year has been a year of acceptance for me.  I've come to accept that many things will never be the same for me.  Acceptance isn't always a let down, but it can be a  struggle to reach.  In my pondering this week I've also come to realize that many of the most important things in my life (besides my family) will just take a different course of action in many cases.  In some cases things will actually be the same.  In a discussion with someone the other day about helping the homeless I realized that my past habit of keeping fast food gift cards, water, and personal hygiene kits to give out is still something I can do.  I may not be able to do my work that I trained to do, but there are many things that I can do at my own pace such as write, do arts/crafts, create recipes, and counsel people through their struggles with Psoriasis and Psoriatic Arthritis.  Yes those things will have to be at a moderated pace to allow for my disease and it's fluctuations.  Yes I may not be able to make money or as much regular income from them, but these are all things I can do to help support myself and others.  I've always been a resourceful person so now that doesn't change.

So for me this New Year I won't focus on a new year resolution, but I will be focusing on a New Life path.  I will have struggles. I will trip and fall occasionally.  I will also succeed and find happiness along the way as well.

May the New Year bring you joy, happiness and fulfillment no matter how you choose to go forward.  Remember that no matter what, tomorrow IS another day!

Happy New Year!!!

My oldest Daughter and I enjoying Apache Junction.

One of the many ginormous cacti.

The Superstition Mountains

Another view of the Superstition Mountains.

Tuesday, December 18, 2012

Greetings from Phoenix!

My oldest daughter and I are home for the holidays!  I'm really tired after the drive, but my joints feel SO much better (as always) from the desert climate.

I went to see Dr. Lavery last week and have officially decided to go on disability.  My skin was TERRIBLE when I went in.  This is what my hand looked like, and my feet, knees, and elbows were equally bad.
You can even see how sausagey my hands have gotten.  My swelling has improved since starting Arava, but I didn't really realize how much constant swelling I had because I see it every day.  He prescribed me Betamethasone dipropionate, a steroid topical cream, and referred me to a dermatologist.  We are pretty much at the end of options though for treatment.  I am going to see if the Derm can get me started on Stelara (approved for Psoriasis, in clinical trials for Psoriatic Arthritis), but I can't get an appointment till I get back from Phoenix.  It is also questionable if the insurance will approve it because I have Psoriatic Arthritis.  ANYWAY, I've been using the steroid since Thursday and my skin is much better.  I'll take a pic to insert later so you can see the improvement after 5 days.  The cracking has stopped, and I do still have some scaling, but it isn't coming off in sheets of skin anymore.  My daughter also got me some Dream Cream from Lush to try.  I put some on one hand today and it has improved even more and is very soothing.  I'll probably quit the steroid tomorrow and just use the Dream Cream the rest of my trip unless it flares again.

I'll try to remember to come say hi occasionally over the next 3 weeks, but you'll have to forgive me if vacation outweighs blogging.

Hope everyone has a wonderful Christmas!

Sunday, December 9, 2012

I've felt like a slug for the last 2 weeks.

I'm sorry for not posting the last few weeks.  I went to Baton Rouge to visit my oldest daughter for Thanksgiving.  It was a wonderful visit and I was actually feeling pretty good besides fatigue.  Then came my Simponi shot.  I waited till I came home from my trip to take it so I wouldn't have to deal with side effects while on the road.  I'm so glad I did.  I had a lot of dizziness and nausea almost immediately.  Within 2 days my skin and joints started to flare.  My joints seem to have leveled out, but my skin has been in constant flare every since.  It has gotten to the point that I need to wear long sleeves and long pants to bed because my skin will crack while I am sleeping and bleed.  I went to get blood work done last week for my appointment this Thursday and the nurse said my skin was probably the worst she's seen on anyone in a long time.  On top of that my fatigue has been even worse than my new norm.  So in conclusion my last 2 weeks have been generally crappy.

I have decided I will no longer be taking Simponi.  I believe that the combo of Arava and Butrans is helping my skin and inflammation significantly.  I will accept the need to take 2-4 naps a day if it means that my pain levels and arthritis flares are what I consider bearable.  I don't believe I am employable still.  I have so many issues with fatigue that I couldn't make it through a work day.  I also still do have mobility and dexterity issues that make doing even clerical tasks painful and impossible most days.

So there you have the last 2 weeks and my excuse for not keeping up with my blog.  I will try to do better.  My oldest daughter is coming home Friday and we will be leaving for Phoenix to spend the holidays with my family. I can't wait to get there.  I miss my family every day and I feel SO much better when I am there physically.

My hand in Psoriasis flare.  You can also see the sausagey swelling in this picture.