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."

Tuesday, October 11, 2016

Ultra Sound Results

   My blood work showed that with me being off the NSAID medications for a month my Kidney function went up 10%.  Which is great.  I now have 62% kidney function which is still Chronic Kidney Disease, Stage 2.  BUT that is good news !  He was not sure it would improve at all.  I do still have blood in my urine so we are going ahead with the procedure where they take a camera in and look at where it is coming from (Nov. 2nd).  The Dr also feels very sure my pain in my right side is Arthritis. Well I am thankful for Arthritis because that is much better than the other diagnoses it could be!  So I have to be on pain medication that will not hurt my kidneys or liver but will help me tolerate the pain.

Following up with my Liver Dr on October 27th but from what they told me on the phone it appears I have a fatty liver at worst so I am expecting good news there.

Tuesday, September 6, 2016

A New Avenue on this Lupus Journey

What a crazy week!!!  August 29th I ended up in the Emergency Room.  I started out at my PC Dr because I had been having severe groin pain in lower right side all weekend. (Front and back)  I had convinced myself I had a hernia...When my Dr examined me (mostly talked to me) she said she thought I had Appendicitis... She tried to get me into Radiology at the hospital to get a CTScan but because my Insurance is an HMO she soon realized that was not going to happen quick so she called me and told me to go to the ER because she was worried it would bust..... So I went to Clearview Medical Center.  (Never go to the ER unless you are transported in an ambulance. I drove myself and sat in the waiting room for 4 hours and 20 minutes!!!! ) FINALLY when I saw the Dr. He thought I had a kidney stone! (I knew I didn't!  I had one before and I would not of sat in the waiting room I would of been crawling the walls!) ANYWAY!!! He had me get the CAT-SCAN which would show if it was a hernia? Appendix? Or a Kidney Stone?? Well it was none of the above!!!!  It showed my Kidneys had abnormal function.  He said there was clutter in there and the kidneys were not doing their job cleaning my urine? Blood?  Not sure.  There was blood in my urine and white cells. He handed me a paper and ask me if I was familiar with Lupus Nephritis?  I had heard of it but since I have Lupus SLE I was not sure...Then I put it together.  Lupus was attacking my kidneys...A nightmare I have dreaded...Not this!! I really had convinced myself this would not be me!  ANYWAY he referred me to a Urologist.  I saw the Urologist today.  Dr Roosevelt Allen with Georgia Urology.  He wants to do a test where they take a camera and go into the Kidney and see why I have blood in my urine.  This has been scheduled for November 2, 2016 and he said that is really all he could do. He wants me to go see a Nephrologist at The Kidney Hypertension Clinic next Tuesday morning and see Dr. Kirti Shah.  They will figure out why I am having the pain and why my kidneys aren't cleaning out the waste products....There are 5 stages of Lupus Nephritis.  Praying I am not higher than a level 2....

This story will continue as I go down a new Avenue of this Lupus Journey.  Thank you for your prayers.

Psalm 121
1 I lift up my eyes to the hills-
    where does my help come from?
2 My help comes from the Lord,
    the Maker of heaven and earth.
3 He will not let your foot slip—
    he who watches over you will not slumber;
4 indeed, he who watches over Israel
    will neither slumber nor sleep.
5 The Lord watches over you—
    the Lord is your shade at your right hand;
6 the sun will not harm you by day,
    nor the moon by night.
7 The Lord will keep you from all harm—
    he will watch over your life;
8 the Lord will watch over your coming and going
    both now and forevermore.

P.S. When we get this figured out I will then pursue the next issue.  My Liver is also not functioning correctly according to the blood work.  I have the referral but can only handle one organ at a time... Weight Watcher Update -39 pounds

Thursday, August 25, 2016

Water Aerobics vs 80's Jazzercise

So along with my Weight Watchers (-37 pounds) I decided to join a gym and keep doing water aerobics through the fall after our neighborhood pool closes and hopefully get on the machines and try some other classes.... Well I guess my brain forgot I am 61, and that I have Lupus and Fibromyalgia because the day after the first water aerobics class I was so sore I could not even turn my head without yelling out in pain.  I was miserable. Had to use a gel for my muscles and had trouble sleeping...  It lasted 2 days and I was ok so I went to my next class and could feel a good work out when I was using the weights (styrofoam shaped like weights that you have to keep under the water through a series of arm exercises) I did it,  I enjoyed it and it was fun. One hour of non-stop drill sergeant type, let's go exercises.  The next day (yesterday) I was miserable.  Had to alternate Tylenol and Advil, cooling gel, heating pad..miserable...Today still miserable.  Thought maybe I had pulled a muscle or it was something else. Surely 2 water aerobic classes couldn't put me down like this! I mean I was the Jazzercise Queen back in 82'!!  Well Doc says I probably went about it a little hard, should of eased my way into it. I caused a Fibromyalgia Flare Up.  She put me on muscle relaxers and alternating heat and ice.  She said try to work my way through the classes as best I can.  It's possible that I can get to the point that this will not happen.  So that is the plan.  Hate that I had to miss today but good thing I went to Dr.  Because had I not I probably would be in the bed!

ALSO I started using Quest Protein Powder for shakes, and it has many other uses.  You can bake with it.  Low WW Points and yummy stuff!  I have made Quest Waffles, Quest Cakes, Puddings, Ice Cream and more.  I also use their bars.  The PUMPKIN ones are to die for.  All are more protein than any other powder and all has less than 1 gram of sugar. I love Quest!!

So I am going to work through the pain, continue to eat clean and healthy, lose more weight and meet more goals!  Until next time..........