Friday, December 29, 2017


IT has been a long time since I posted about the Lupus funeral.... A lot has happened but not a lot with my Lupus.  Ups and downs. All downs were to do with joint pain.  My kidneys are doing better.  THis is about my visit today with my Rheumotologist, Dr. Jonalla.

After talking to Dr Jonnala about my joint pain and how it is affecting me she reviewed my file all the way back to 2013.  She wanted to find out why I was not on Methotrexate. I knew i had taken it but was not sure why I stopped.  She said I had gotten nauseated after being on it for 2 months.  We were NOT sure that the meds were the cause but it was the only medication change or newest one at the time so she stopped it.  She ask me to try it again because of the reasons below. 

Methotrexate is one of the most commonly used drugs for the treatment of rheumatoid arthritis, and it is used in lupus patients to alleviate the joint pain and swelling of arthritis involving multiple joints.

 Because of it’s effectiveness, it is being used more and more as the first line of defense against RA, and other disease that affect the joints.  Immunosuppressants, like methotrexate, are currently one of the most beneficial and used group of drugs in treating moderate to severe lupus.    

This can be scary for some lupus patients, originally designed to treat leukemia in the 1940’s, methotrexate was approved by the FDA to treat arthritis in the late 1980’s. 
Primarily because it is known as a “cancer drug” and though it is generally safe at the doses given for Lupus, it is still a powerful medication. 

Soooo I am trying it again.  I am apprehensive because it is primarily used for cancer but after my trip today I am praying it works....My hips and knees really were giving me fits.  Going out almost and stabbing pain...

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



Tuesday, February 21, 2017

Follow-Up / Flair

Feeling down today..Lupus Flair.... Headache, appitite...Stomach issues....So I will do little to nothing...I had to reschedule my followup with my Orthopedic Dr. Because I do not feel like going.

OH TO CATCH UP:  I have had 2 weeks of NO HIP PAIN! 1 day of some minor pain and now several days of no pain. Today was the follow up visit but like I said I am rescheduling and waiting on a call to tell me when to come in.  I am very happy with the results so far and look forward to HOPEFULLY more pain free days.  I have been riding my stationary bike 3-5 miles 5 times a week.  My Treadmill did seem to irritate my hip.  I walked a mile or more last Wednesday and that night and next day is when I had the pain. Tomorrow is my walk day. I hope I feel up to it to see how I am going to do.

I weigh in tomorrow.  Last weigh in I was at -54 pounds. YAY!

Our weather has been teasing us with a touch of Spring which helps to motivate me to walk and to keep pushing through the weight loss.


Friday, February 3, 2017

Time to Catch Up!


Kidney re-check: In Jan I did a 24 hour urine catch and blood work.  Results showed my Kidney Disease unfortunately worsened. I am in Stage 3 now.  Not sure why...... I am to monitor my BP daily for any signs of high BP.  He increase my BP meds and added a prescription of Vitamin D. I already take Caltrate D which he told me to keep taking. Recheck In April

Liver re-check went well.  I do have a fatty liver but not excess.  My healthy eating and weigh loss will help with that. No need for a recheck.

Groin/Hip pain continues. I have exhausted all other options so I went to see if this is bone related.  At this point it has spread to by buttock and side of my hip.  Walking distances is painful and I want to be able to walk and get back into Water Arbobics.  I need to be able to go to the store without being in pain. So I went to an Orthopedic Doctor in January.
     Dr Albert (Orthopedic Dr) did xrays and showed me that at my right hip joint bone is crumbling and there is an opening there where there should be padding. She suggested I go in for a Fluoroscopy which will be a small X-ray and it will guide them to the joint so they can do 2 injections of Cortisone.  Not something I look forward to but if will give me relief I will do it.
     So...I did it this morning.  I had to go to their surgery center.  They numbed it with injections, inserted the X-ray scope and went into the joint then gave me the cortisone injections.  Yes it hurt.  No I was not asleep.  I survived.  I am now home and in my PJ's for the rest of the day no activity.  I take it easy for 2 days.  They said there would be pain at the injection sight for a couple days and it may take 72 hours for the injections to start working. I just pray they do. I have a follow up in 2-3 weeks.  That should tell the story if it is working or not and hopefully it will!!

I made a change in my Insurance.  Went to United Healthcare so I could go back to my original Rheumotologist, Dr  Jonnala.  I saw her in January also. It went well and I go back in 3 months.

Weight Watcher update:  I have lost 50 pounds as of this week. Praise The Lord!

From a Devotional Reading this morning:
The Lord says "I AM WITH YOU AND FOR YOU.  You face nothing alone----NOTHING!  When you feel anxious, know that you are focusing on the visible world and leaving Me out of the picture.  The remedy is simple: Fix your eyes not on what is seen, but what is unseen.  Verbalize your trust in Me, the Living One who sees you always.  I will get safely through this day and all your days.  But you can find Me only in the present.  Each day is a precious gift from My Father.  How ridiculous to grasp for future gifts when todays is set before you!  Receive todays gift gratefully, unwrapping it tenderly and delving into it's depths.  As you savor this gift, you find Me."

Romans 8:31
"What shall we say about such wonderful things as these? If God is for us, who can ever be against us?"

2 Corinthians 4:18
" So we don’t look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever."