Today is a So/So Day!!

I'm up at 12:10 am thinking today was a so/so day I'm a little pain. I started having this intense headaches that just won't stop the Dr. put me on a headache meds which I is still at the pharmacy because I can't afford it now that's sad for me. I'm depressed most days due to pain and now I'm having trouble breathing back to the oxygen it helps my chest I guess it calms it down Still unable to get pain meds all pharmacies are still out that's so crazy to me. I try to put on a happy face but deep down I'm sad and depress feeling I can't control. I have my finger wrapped with a ace band that I cut so my finger won't bend due to the pain. Funny thing my other fingers hurt as well just can't find a finger brace. I just pray and go on I don't believe God brought me this far to leave me so I dealing with the pain. My grandma use to say thank you for the pain and I second that.......

ITS NOT FAIR

I'm so angry because every pharmacy is out of my pain medicine. What I don't understand how could every pharmacy be out when I'm in desperate need of it. I'm in so much pain and I don't think I'm the only one in need and can't get it filled. As September 6, 2014 Federal Regulations made a lot of changes for Hydrocodone it went from a class 3 to a class 2 making it hard to obtain. So I'll just play the waiting game and pray that God fix this mess that somebody created. My depression has sunk deeper than it already was not knowing when I'll get relief. To God be the Glory I'll keep praying can't stop won't stop!!!!!

Fro Fog

I found out different things that I didn't know that's help me understand why: From my Sjogren group memory loss is from fro fog. Didn't understand why I would mean something and say something else or forget things oh it would be in my head but I just couldn't say it. I would say to myself what's wrong with you or I feel stupid.  My daughter would say mom that's not right you mean this or that. Its related to Fibro myalgia and you get when you become stressed. Well I'm stressed all the time stressed, stretched you name it. Now I know because I thought I was losing my mind at times, your sanity is a terrible thing to lose.  When my daughter takes me to the Dr. and he or she looks at and ask about my problems sometime I don't have a clue and I feel real stupid because I have to make me brain think or wake it up. My solution now is to try to write it down before I forget.

Don't judge a book by it's cover

Another case of family don't understand your struggle. They call you everyday or every other week to see how you are feeling than they say you sound better but their reality of it is they don't know how you are really feeling or they doknow and they just love saying you sound better.

This lupus group I've been interacting with say family will never undrstand what we go through. It just burns me up the pain every day.  Pain is not my friend without pain pills you might as well stick a fork in me because I would be done.

I'm so depress it takes a lot to just hold my  my head up and keep going.  I'm so tired today is a rest day but I'm so drowsy all day and night ever since my Rheumatalagist  increased my medicine called Gabapentin from 300×3 to 300×4 and I believe its raising my blood sugar too.


The only girl's that know my pain are my daughters they don't judge me by my voice
They can look at me and right off the bat
They would say mom  what's wrong you don't feel good are you hurting what hurts
They are more understanding to my pain.
Love thoughs girls to life.  

Support groups are very helpful

I found out some interesting things today.
You can have more than one autoimmune disease. In my case I've had lupus for 24 yrs but was diagnosed with sjogrens
disease about 4wks ago.  I was told its Mixed Collagen Vascular Disorder.
Collagen is a tough, fiber-like protein that makes up about a third of body protein. It is part the structure of tendons, bones and connective tissues.
Collagen Vascular disease occurs when problems with the immune system affect collagen.

Changes

I've blogged in a minute.  I have some what good and bad days.  Its 2:28am and I'm up feeling some type of way.  I'm glad my Dr. Is weening me off the Prednisone that makes me so happy maybe my sugar levels will remain good and come off the insulin as well.  He took me off two but add two more Gabapentin for my joints and Allopurinol for the gout my uric acid is high.  Gout does run in my family but never, thought I would join the number. These medications have so many side effects. Dry mouth, diarrhea, nausea, worsening joint pain, loss of appetite, muscle pain, tightness in the chest, life-threathening allergic reaction, swollen glands or lymph nodes, weight gain, swelling of the lip or tongue, servere tiredness or weakness, chills just to name a few.  I hurting on my left side it feels like apain I had before throbbing and a sharpe pain. That hurted worse to lay on it. 

Today is my Birthday!!!!

Today was a great day. I didn't do anything  out of the norm just relaxed in my own atmosphere and that was enough for me.  The love that I felt the most was from family and friends that didn't forget it was my birthday.  I WAS OVERWHELMED WITH LOVE and that's all that mattered today. It was one if those things better than gifts or cake and ice cream.  Sometimes the gift of love out weighs everything. When you have been sick as I have love means a lot.
August 19TH