Saturday, March 31, 2018

Floroscopy is NOT SO BAD after all!

2nd Fluoroscopy

March 28th, 2018

2nd Floroscopy 

Took 5 mg Valium the night before
Day of Injection took regular meds with a Tramadol. Then I took a 5 mg Valium when we pulled in the parking lot. As directed.

The staff was nice and everything went like clockwork.

AS they prepared me for injection they talked to me about other things (Our trip to Tampa, Lisa etc) Dr injected numbing meds, then she injected the dye then the 2 cortisones.  It was just slightly uncomfortable.  Mostly pressure.

Sent home with instructions to ice if needed.  I did need to ice but it was not that painful at all.
That night the area felt weak and I iced to go to sleep.  I had a headache that night and woke up with headache next morning,

I was able to sleep on my side the first night. ( Have not done that in MONTHS!)

2nd day better. Slight pain in butt not much at all in groin. SLEPT GREAT! NO PAIN IN GROIN!

3rd day today. No groin pain. Sleeping on my sides again!!!

My R. knee still hurts so I am thinking that it is not the same issue.

I am writing this to remind myself to get these injections as soon as I need them and NOT WAIT to the point where I did this time.  The injection is nothing compared to the pain I have been in these last months.

Wednesday, March 7, 2018

Ortho Visit

UPDATE:::::::I did have to go to ER!  My hip/ groin area is inflamed. Nothing broke. It may be 2 separate things. Pinched nerve could be making pain radiate down my leg.  If it continues I'll have to see A Back Dr. But right now they are taking care of groin hip issue. WEnt to ORTHO Dr and a Fluoroscopy is all they can do. They inject 2 kinds of cortisone down into the joint with a camera. Long acting and quick acting. Hurts but it did work last time just didn't last but 5-6 weeks. The surgery Center is checking with insurance and then they will call me to set it up. P.S. I hate Fluoroscopies!  But it could be worse!

Friday, March 2, 2018


Methotrexate is NOT WORKING if anything my hip / groin is worse.... So I saw my Rheumotologist Friday Feb 27, 2018 and she took me off of it.  She was almost at a loss as to what to put me on because I think we have tried all the meds she normally uses... Either they don’t work for me or the side effects are bad... Most do not work......

We talked about Lupus and Osteoarthritis and my options.  We discussed everything from Medicinal Marijuana (which of course is not legal in Georgia), to what we have tried, to going back to the Ortho Dr and even discussed using a scooter if Medicare will cover...She started me on Gabapentin to see if it would help...

But my hip / groin area is REALLY REALLY HURTING BAD!!!  It hurts to sit...It hurts to lay...It hurts to walk...It hurts from my butt cheek to my ankle. The area from my butt cheek to my groin is the worse. Down to my knee is bad as welll.  To my ankle hurts when I lay down...I am using a cane at this point and last night I could barely get into the bed.  

It was one year ago that I went and had that Flouroscopy where they took a camera in and looked and put in the 2 different types of cortisone which lasted a little over a month.  I went back and had 2 more shots...Lasted 2 weeks...And I said I would NEVER do it again....

I have been taking Tylenol Arthiritis and Tramodol and whatever my Rheumotologist has prescribed for the last year. Trying to avoid going back to Ortho Dr....  

Seems like when I got the flu in February (it lasted 3 weeks)  the pain got lots worse....Then I did slip and fall on our wet deck last Saturday the 28th (Landed on my butt) and I am not sure if that is what made it worse, but it is worse.... The pain has always been in my groin area (right side) but when I had the flu it started working its way to my knee at night and if I don’t keep my leg straight and lay on my back at night it is bad pain and no sleep...  Today has been PAINFUL!!!! So...out of desperation....I made an appointment with my Orthopedic Dr for next Friday (earliest appointment I could get)..... I am so tired of hurting. I want to be able to walk and do normal daily activities without hurting and without a limp. I pray I make it till Friday without having to go to the ER. 

To be continued.....

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.