Tag Archives: Lupus

If my life was a hockey game, I’d have a hat trick!

I was diagnosed with systemic Lupus and Fibromyalgia in Aug. 2000. I already had scoliosis, but never had any problems as a result of it, up until I was having Lupus related problems. Lucky for me, I lived as a military spouse on one of the best medical military posts in the world. The military had no reason to make me continue coming g to the office for ‘follow Suppo appointments, or running all kinds of UN necessary tests, at which the general public doctors are in my opinion,guilty of doing. So it took them only 9 weeks to diagnose mewith the symptoms I was having.

I was sick and had ‘flair ups’ for 5 years. I am very blessed, and ay times actually forget my ‘chronic’ conditions.

The hat trick comes in June of 2011. I was on a family fishing trip on a charter fishing g boat. When trip was over, I was disembarking the boat when my foot hit the ramp, it was wet and I went flying. Immediately my foot was purple! I kept repeating ‘I broke my foot’. The pain wasn’t immediate. I was embarrassed, and jumped up like I was OK.

That night, the throbbing and pain was horrible.

I went to my orthopedic the next a.m. not broke!! How could it hurt so bad?

Months went by, I continued to work because after all ‘it was only a sprain’. I made decision to go to a different doctor when my orthopedic seemed disappointed that he wasn’t going to be doing surgery on a broken leg. I ended up having surgery for torn meniscus. But only after being told I have RSD. Before she could do the surgery, I had to start spinal blocks. Since the day I was diagnosed with RSD, I have gone through denial, depression, anxiety, anger, resentment, confusion, etc.

I have heard ‘well maybe if you get up and move around’ so many times I could scream!

There are days that my foot/ankle look fine, yet I’m in pain. People always say,’well at least its not swollen’ yet I wish it was so I at least had something to show for the inner pain that I’m in!

As I lay here with my leg elevated, my foot is purple and ICE cold to the touch, yet its on fire!!

I wish I could get my family to understand, I may look OK, yet I’m dying inside. Every day I wonder, ‘where will this RSD take me?’ Why is it that I have 3 chronic conditions, with no cure? What can I do to change my situation? Do I want to live my life with this stopping me from doing the things I enjoy?

The depression at times sets in and I feel sorry for myself. My life flashes in front of me, what have I done to deserve all this?

I wonder what its like to be someone else. To live life healthy, happy and free from pain. I realized today, I have lived almost my entire life in pain. Mostly physical, which ends up emotional pain.

I tell myself, this to shall pass……but will it?

Why do I have so many chronic conditions?

For years I had different symptoms, illnesses etc. I was told I was ‘it was just in my mind’. Although I knew it wasn’t and I had legitimate illnesses, I started to wonder myself ‘maybe I’m going crazy?’

In Aug. 2000, my than husband was stationed at Fort Bragg N.C.

My daughter(13) at the time and myself were living there by ourselves, far from any family. My husband was in Missouri, and I had no one to turn to but myself and God.

I will never forget the day… I had been having so much pain in my entire body,radiating in my back. I couldn’t state awake, yet I couldn’t state asleep either. I would be driving my daughter and I, and have blackouts. Would wake up driving, not no how I got there. My daughter Chelsea had no ideal would call my mother who lives in Floryida several times a day. Acting each time like all was well.

Than came the day, I had so many tests run, blood taken, MRI’s, cat scans etc. I got the call telling me I have systemic Lupus and Fibromyalgia. What in the world ate those? I said. I was Tod to clear in and we would discuss my options.

I immediately called my mom in Florida and went and picked my daughter up from school. I thought,’maybe I will just leave and go back home,and everything would be ok’.

My wonderful mother made the decision to come to Bragg for few weeks. I again, put on that I was OK.
I was pretty much bed ridden for 2 months, was on a lot of steroids, pain meds etc. Felt defeated. Went through bouts of depression.

Second guessed my doctors diagnosis, but couldn’t figure out why I was feeling so aweful.I finally stopped fighting my emotions of the stigma of having a chronic condition.

As the years have passed, I have had my ups and Downs. I have been mostly good.However when I do have flair ups,there bad. I have to physically and emotionally come to grips with letting it run its coarse. ‘This to shall pass’. Its been my experience that the emotional is at times, much worse than the physical.

In June 2011, I fell on a boat, jury my knee and ankle. After months of MRI’s, etc. I ended up with yet another chronic condition RSD!!

I have decided that life could be worse, I could have terminal cancer, brain tumor, heart attack, stroke… My attitude is a direct reflection of how I feel and I have to always remember, it could be worse 🙂

Afraid of pain

My name is Tara and I am from Ohio. I am 29 years old. I have a daughter that is 8. Everything she knows is mommy being sick.

I have Lupus and Loin Pain Hematuria Syndrome. It struck me in 2000. I had several kidney stones and had to have surgery to remove them. Ever since I have had dibilitating pain. I went to many urologist and they all told me the pain was in my head. went on antidepressants and began thinking maybe it was me! I met a wonderful urologist who said I was the first patient he had diagnosed with LPHS. That’s when all my medications started being prescribed. The pain was not being taken care of. I could barely get out of bed. I was vomitting every other day. I had lost 30 pounds in 4 weeks. I slept 20 hours out of everyday. How could I take care of my daughter? My pain was not my first worry but my daughter seeing me that way and worrying what kind of chances she will have in getting these diseases. That thought just killed me. My depression sunk even lower and I was going through a divorce. I noticed I was a totally different person and hated it.

I look back now and I am so glad I made journal enteries. I often thought how much easier it would be if I just died. Now that I am on a road to becoming myself again, I can’t believe what I wanted to do to myself.

I have recently had a pain pump implanted. I am having alot of success with the procedure. However it is causing new pains. My right leg is completely numb and I am having awful pain that meds are not helping. They think that my pump is sitting on a nerve. The only way to fix that is to have the surgery done again, moved and have the possibility of it happening on the other side.
I would recommend this to anyone with chronic pain if you are a canidate for it. It really has given me a piece of my life back. I no longer feel like I am dying. I am able to take my child outside to play and out shopping. I am still living with pain but it is much tolerable. My Lupus still is something I am dealing with daily. But the rare kidney disease is so much better. I am lucky that I have wonderful doctors that have supported me. I was a guinea pig in there office for the pain pump. They knew of how bad the pain had effected me and decided this was my only hope. God bless smart doctors.

If anyone would like information, I would be glad to answer your questions the best I can. Thanks for reading my story. Hopefully I will chat with those of you who share similar situation. I find it is a stress reliever to know there are people out there that are in my same boat. My husband doesn’t understand so it has been a long, hard road alone.

twehe@wideopenwest.com
Tara