Sunday, April 30, 2017

Lupus, It's Real!

This is becoming all too real.....

Today after church I agreed to go to a funeral of my husbands bosses sister.  Rick had told me all about her and she had been in a coma for a long time and it was his bosses younger sister.I didn't remember all he said but i knew it meant a lot to him to go and he wanted me to go so I went.

So as usual my hips were hurting but I pushed through got my shower and got ready for Sunday School and Church. Had a great service and then we went out for Chinese food after church. Climbing up in the truck I am aching but I am trying to remember there are so many others so much worse than I am but still I hurt.  A lot....As soon as we ate we were on our way to the funeral home.  As always after eating usually the first meal of the day (I did not eat breakfast) my stomach starts churning, cramping, hurting.... Well it did and I needed to stop at a restroom.... It was bad and I was getting stressed and upset and I remember saying "I am so sick of living like this!"  Well we were out in the country and there was no place to go to the restroom so by the time we got to the funeral home Rick dropped me off at the door so I could run in and pray I made it... Yes it is that bad and sometimes I don't......this time I did. Thank you Jesus!

When I came out Rick immediately started introducing me to co workers and their wife's, kids, grandkids etc.  We walked over to his boss and I hugged his wife Elaine and she said its such a sad day and I said yes, and she was so young.  She said yes just 54 yrs old.  She had LUPUS and she had been suffering for a long time........I blurted "I have LUPUS!"  She looked a little uncomfortable and said, "yes, I know" and she changed the subject and then all Rick had told me finally came to memory that his bosses sister did indeed have Lupus and here I am at her funeral. I am at the funeral of someone who died from Lupus.  She was only 54.. SHE HAD LUPUS......LUPUS..Lupus...Lupus... 

Suddenly we were ushered into the chapel and the service began and it felt surreal.  As her broken family walked by us her husband and 3 children all grown but all broken from this horrible horrible disease that I shared with this woman that I did not know.  How destined was I to be at this funeral and for what reason. I know God sent me here... I was seeing my was so unnerving...but Lupus is real..Its horrid and its cruel and its painful and its REAL!  This just made it so much more real!!!

May is Lupus Awareness Month and in honor of Donna Wall Frost I will post everyday on my Facebook and My Lupus Journey page about making people more aware of Lupus.  What it is and that we need a CURE!  

FACT: Lupus strikes more people than AIDS, Sickle Cell Anemia, Cerebral Palsy, Multiple Sclerosis, and Cystic Fibrosis combined. 


Thursday, April 27, 2017

Slow as a Turtle In April

*Orthopedic Appointment. On this day still doing ok with the groin area of my right hip where I had the injection. (Arthritis)  Little to no pain.  But I have been suffering horribly with the outside of both of my hips.  Ortho called it bursitis.  She said she could give me shots of cortisone right now in the office.  I of course baby that I am was apprehensive but the fact that I am not sleeping and the fact that the other shot worked made me go ahead and say OK!  I ask her how bad it hurt, she said well I am up and down these halls all day and I haven't heard anyone screaming...... So she proceeds to go get the hypodermics.  The nurse brought them in and when I saw her holding them up I gasped! They were so big!!! UGH!! So I lay on my side and Dr pushes on the outside of my hip to find the sorest spot and puts in the 1st one....Oh my..the pressured was horrible..I did yell out and I was almost sick.... HURT BAD!!!!!  She ask if I still wanted the other one...WELL NO I DON'T but yes, I continue torture and pain.  She left and I was still taking deep breaths and moaning.....Barely could walk.....HATED IT AND WILL NEVER EVER DO IT AGAIN......
Not able to do much exercise.  Do ride my bike some but it irritates my hips....

NOTE: Exactly one month to the day the pain came back.  It is sore at night like sleeping on a bruise. Some nights are worse than others.  My groin area pain is back as well. Some days worse than others.  All of that was a temporary fix.... Not sure it was worth it.....

* Nephrologist Dr Shah did more blood work to check my kidneys.  Still stage 3 Kidney Disease.
Discussed monitoring my BP, weight and drinking lots of water.  Will continue to recheck every 3 months.  Apparently Kidney Disease can worsen with no warning.

* Rheumatologist Dr Jonalla. Did just a consult and got my prescriptions. No blood work because I had done it earlier in the week with Nephrologist. Discussed my hip pain and some skin issues I am having with rashes etc. Said I needed to take Prednesone if I broke out again to avoid a flare.

*Weight Watcher.  Weight loss is really going slow!  -58 this week.  Wanted it to be more because this week is 1 year I have been on WW. I can't do much exercise on a good day I can walk but I don't like to go off walking by myself in case my hip goes out.  Which it sometimes does and it is very painful I am afraid I would not be able to get home if I was alone........So I walk shopping! But I really need to quit doing that! LOL!!

Look to The Lord and His strength and seek His face always. PSALM 105:4