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

Blood will bleed you!!!!!

Real talk I don't want to be judged on what I'm doing and how I conduct my life its sad when you're being talked about by the people you thought loved and cared for you. God said vengeance is mine with that being said I'm definitely leaving it in Gods hands.  To God be the Glory.

In the midst God keep me

Just thinking back on my flare 20 plus years ago the difference between now and than years ago my girls were very small I had to take care of them in the midst of a lupus flare it was nobody but God that kept me, remembering there was no other help.  Now those girls are all grown up I don't know how I would manage without there love and support. My heart goes out to anyone thats sick due to illness and those that have no family to care for them. My illness just open my eyes wide life is to short.

You cant depend on everybody

I've always thought that family is the ones' you can depend on in the time of sickness, financial problems, emotional distress but that's not the case.  They will integrate you, bully you and make you feel like crap because you're sick.  They will eventually forget about you in time.  I've learned not to get mad at them because everybody have there own family but don't assume everything peachy because you haven't  check on your love one.  Its not fair to ridicule you for answers that were told already.  Sometimes I feel like I've committed the crime by that getting sick.
I have it hard enough trying to get by day by day.  I'm the one going through it, I'm the one that's life will never be the same but do they understand that. If God called me home to glory would they shed a tear would they cry or would they fall out in disbelief  because they didn't do all they could or blame themselves for not doing more.  I have much love for my family and I know in my heart they don't owe me anything.  All I ask is for love and support from my family.  Its sad when they hear or you say something they don't won't to hear and than they go into hidding those are to ones that you don't hear from foe many moons.  I love my family I know their iintentions are great.