Sunday, August 21, 2011

My Story

When I was pregnant for Richie, he is 20 now, I had a terrible pregnancy. I never recovered after it. I continued to feel extreme fatigue, pain, and aches. I saw a Rhematologist, Dr Martin a jerk to say the least, when Richie was 2 and he said it was Fibromyalgia, so I just lived with the pain and fatigue on a daily basis never believing that is actually what I had, and if it was I always believed there was more going on then that. I never took any meds because I just thought I can fight this and at this time there wasn't much known about fibro. A few years later I couldn't take the pain so my primary doctor  started me on Bextra which helped with my pain. Finally some relief. Problem was the FDA banned Bextra a few years later because they found it was causing heart problems in patients.

Over the years the pain became much worse. Joint pain, hands were swollen all the time and I was dropping things, low grade fevers on a daily basis, severe fatigue, stiffness especially in the morning and when I slept or sat for any amount of time,  muscle weakness, problems with my eyes. Then one day I woke up and my right eye was drooping half way shut. It was crazy. I started to become even weaker unable to lift my hands over my head  for any amount of time. Stirring when I cooked something was next to impossible. I would start something and have to stop to rest in between. My vision started to become worse but I blew it off to getting old, thinking this is just what happens. I would get my eyes checked and new glasses and have to continue to go back saying this prescription isn't right. I continued to just live with it. I was forced to quit working in the beauty salon about 11 years ago because I just couldn't do it anymore.

In September of 2006 I was at a point where I was in so much pain especially at night. I literally was screaming out in pain. I must have been much worse than I thought because my kids would ask me why I was screaming and moaning at night when I was sleeping. In the morning I would have to walk down the steps stiff as a board, one step at a time, holding the banister and listening to my knees grind together like sand in your hands.  I decided it was time to see another Rheumatologist, Dr. Jolene Key, she was amazing. I had never been to a doctor who spent so much time  with me and who wanted to know every detail. At that first visit she said, you do not have fibro and something else is going on, we are going to try to figure this out. Finally! A doctor who was going to help me. She ordered all kinds of blood tests and there were a few that were not normal. I had a positive ANA, these are auto antibodies in your blood, along with SSA and SSB anitbodies. This pointed to autoimmune disease and with my symptoms she diagnosed me with Inflammatory Arthrittis. She started me on a medication and I began to feel somewhat better.
She said there are hundreds of autoimmune diseases and sometimes it is very hard to pinpoint the exact disease it may be.

A few months after I began seeing Dr Key my sinus' became very plugged. I had a CT scan and was started on a strong antibiotic for three weeks. Then had another CT after the three weeks  that showed no change what so ever. I was sent to an  ENT who said there was no way this would get better so I needed to have surgery to fix the problem. So February 2007 I went under the knife  and had my sinus' cleaned out. It was the worst surgery a person could ever imagine. Mind you, I had my gallbladder out and a hysterectomy which were a breeze compared to this. We were hoping the droopy eyelid was being caused by the plugged sinus'. Boy were we wrong.

Almost immediately after the surgery things began to get much worse. My eye drooped more. My vision became so bad that I had to keep my eyes closed when I talked to people because it felt like my eyes were moving all over the place. I was unable to read or look at anything. Any kind of light, bright or low, made me bonkers. I wore sunglasses even in the house. We had to keep the shades shut all the time and the light low or off. I couldn't look up or to the right or left without double vision. It was like living in hell to say the least. I was so weak I couldn't even get off the couch. I couldn't hold my head up without using my arm or resting it on the couch.  If I did get up after a few minutes I would get so weak I would have to get back to the couch to lay down. I felt like jello all the time.

By the end of February I saw a Neurologist which was like a nightmare. Test after test after test. Long story. He told me I had Myasthenia Gravis, which is another autoimmune disease. He started me on high dose steroids which helped somewhat, especially with my eyes. He referred me to another doctor whom  I know see on a regular basis,  Dr. Christopher Glisson a Neuro-Opthamologist.

I take many medications which help me with most symptoms but because there are no cures it really is a matter of controlling the symptoms with the meds. Currently I am in the process of possibly changing meds because the one I am currently taking it not working so great for my eyes or my muscle weakness. I am once again back to not being able to read, having more trouble focusing and it is like I live in a big world of blur. I continue to change my glasses 2x a year hoping this will be the time I get the right prescription, with no help.I found out this year many people with MG have this same issue.

Although I am happy to report, compared to where I was, I am happy to just be able to get out to grocery shop or hang out with my family. I still get very weak. I almost always have someone with me in case I get weak and can't drive or need help checking out a the store. There are times I am in the store and will say to Rich or whoever I am with I have to sit. It is funny cause I have actually sat in the cloths department on the shelves before. I just have to laugh at myself or I will cry. When you get that weak it makes you want to cry for some reason. Which of course when I am good and I think about it I laugh.
My life is very limited but my life is very good. I have a man who is amazing. He is my rock. If not for him I am not sure where I would be. He always told me,and still does, you are going to get better especially when I was really sick. I cried all t he time and would say I don't think I am, I just want to die. He would just put his arms around me and tell me, yes you are don't talk like that.
I still need help with everything. I do as much as I can around the house but that doesn't leave much for having any social life. It seems we live in our own little world as sickness is hard on friendships. People really do care but most people just want you to be better and when that doesn't happen it is hard for them to understand. We have a strong faith in God and that is what helps us through each day. I am blessed beyond measure and I know all of this is happening for a reason. I figure now I can understand others when they are ill and I know not only the physical toll lit takes on a person but the emotional toll. It isn't easy wondering what each day will bring but when you have the people you love surrounding you, you realize that is all that matters in life. I don't sweat the small stuff anymore. Material things mean nothing to me. Things to me are medicines, devices to control pain, having people around to help hold me up, etc. You get the picture. Now you can understand why I love facebook so much. It gives me a look into the life that goes on out in the world. I truly appreciate everyone of my friends who inspire me everyday. Thank you to all of you!
Love is all that really matters.

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