Feelinsilly - Linda - original post 01/02/2004

HOSPICE, genetics clinic, leaking legs, EMG, nerve conductions, phantom liquid feeling, chronic fatigue, chills, malaise, ankle pain, swollen feet, transient lymphedema, full body lymphedema, tissue hardness, dystonia, painful boil

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Feelinsilly - Linda - original post 01/02/2004

Postby patoco » Sat Jun 10, 2006 12:58 pm

Hi everyone,

My name is Linda, feelinsilly is just for fun!
I'd like to share my story, it is a very long story, so please bear with me.

I am married for 24 years now. I have a daughter 22, a son 15, another daughter 12. I live in southwest Missouri. I am 6' tall and weigh alot. LOL. (about 370) My doctor says that I have the largest bone structure that he has seen in a lady. I have always been in good health until Oct. 2001. My mother is in a nursing home, for almost three years now, she is 73 years old, she has a sharp mind and a broken down body. She suffers from LE. In her earlier years she did not have health insurance and did not get the care she needed. She is a large lady and her knee bones are bone on bone. She is wheelchair bound, can not even get up to use the bathroom. Sad sad story.

I had always done factory work, standing on my feet for 10 hour shifts. My legs started hurting so bad, that I cried every night after I'd get home from work. Finally, I could not stand it anymore and quit. I took a part-time job at the local motel and cleaned rooms.

Not a smart thing to do. I was on my knees alot cleaning bathrooms. In Oct. 2001 I came down with Cellulitis. I never even had heard of it. I waited too long and it progressed. I was hospitalized for eight days, had IV antibiotics. Went home and took four more perscriptions of antibiotics before it went away. At the same time I had severe knee pain in my right knee. The doctor keep telling me that we needed to keep focused on the cellulitis. After I had to finally get rude, he referred me to a orthopedic doctor. I had a menixus tear, as well as alot of wear and tear. I had arthoscopic surgery, and he cleaned it up. I started physical therapy, after one week, I had a set back and had to start my recovery over. During this time, I began to realize that I might have LE. I told the doctor, he didn't know, so he sent me to the LE clinic and sure enough I did have it.

I began the bandaging and manual drainage, for about four weeks. During this time I had some other problems and had a complete Hysterectomy in Apr. 2002. After that surgery, I kinda blew my top, and took my bandages off. I had had enough of it all. My therapist got angry with me and would not order my custom-fitted stockings.

I had decided to go back to school to be able to get a sit down job.
I started school in Jan. 2003. I had to walk three blocks everyday with a heavy bookbag and after a couple of months my left knee began grinding as I walked. The doctor did more test, and said my left knee bones were - bone on bone, and I had a menixus tear also. So I scheduled surgery for Spring Break. In Mar. 2003, I had my right knee operated on. I had a week to recover before returning to school. I returned to school the next week and thought my leg felt better. However, I got tired really easy.

One of my incisions was not healing up as well as the other. The following weekend, I began to feel real bad, I was using the restroom and could not get up off the toilet. It took my husband and daughter to get me up. The pain was intense, possibly the worse pain I had ever had. I went to the ER, it took them about 10 minutes to figure out that I had an infection. They did blood work, called in a infectious disease doctor and I was diagnosed with Staph infection. I had to go to surgery immediately and have a lavage done. ( they put tubes in you knees and run antibiotics through your knee ). Very painful, I did have the morphine drip, Thank God for morphine. I was hospitalized for seven days. I was sent home, and had a walker and portable potty delivered, I was crippled.

I took oral antibiotics at home, however, I did not get better. I went back to the hospital and had another lavage surgery, that night the nurse was a little rough with my leg and pulled the tube out. The next morning, I went back to surgery again to have the tube put back in. This hospital stay was ten days. I had to have a 'pic line put in my arm. Home Infusion came to my house three days a week. I had antibiotics running in my arm through the 'pic line 3 times a day. My 'pic line became infected once and had to be put in again, at the hospital. I had to do the antibiotics for 5 weeks. In Mar. I had the 'pic line removed. Since then I am still somewhat crippled and suffer with pain everyday. I have pain in my back and my left foot, so I went to the Pain Management doctor and have pain blocks in my spine at three different times. It did help alittle, but not enough.

I continued complaining of pain to the doctor, so he did blood work on me and found out that I have GOUT.

I have been to the ER twice in the last thirty days because the pain was so bad. More blood work and my sedmentation rate ( the amount of inflammation in your body ) was at 62. Normal is 0-20. They were considering hospitalizing me, went to call my primary doctor and found out he can't even admit patients. Then I researched him on the internet and found out he is on 5 years probation and suspended from another hospital. I was devastated.

My New Year's resolution is to find a new doctor, like an internal medicine doctor and a new hospital.

The doctor's told me the staph infection is gone. I researched and found out that staph will live in me forever. It can be dormant and not show up in your blood, but it can wander throughout your body and do damage.

Thanks for reading my story. Thanks to Pat for the site, It's nice to read other's stories, it helps to know I'm not the only one. Pat all the forums have been very helpful, I have learned a lot from them.
Now if only we could get the doctors to read them. LOL........

I forgot to say that I had to drop out of college. I did however get a refund.
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