I guess I haven't been in this sight for some time. Luckily, someone saw my story and sent a reply. I had forgotten about it since my memory is really bad again. I'm not allowed to cook. They are afraid I'll set the place on fire. I really need to talk with others with similar problems. I am house bound and have not driven for 2 years. I get out to dr's appointments and get to go the store on occasions. When I wrote last I told you that I have been suffering from a myrid of symptoms for sometime now. Guess almost 8 years off and on. The saga continues. Approximately 2 1/2 yrs ago I noticed that my eye sight was getting bad. I new I had Crohn's Iritis, but this was different. It was most noticable in the right eye. Dr. sent me to an opthomologist who diagnosed a cataract. He said I had lost a complete eye chart, however it was correctable with glasses an at my age would probably fine for a couple of years or more. App. 2 weeks later, after getting used to the high power lens etc., I noticed that I wasn't seeing well again. Went back to dr and he says he can't believe it but I have lost another eye chart and now, it cannot be corrected except by surgery! So, in May 06 I had the surgery. All went fine and after a few days, it seemed I could see better. About one week later, I noticed it felt like I had something in the left eye. Not the one with surgery! As the day wore on, it got worse and I had extreme nausea. I continued at work because I had a very demanding job and so many things had to be completed every day or there was no catch up time. By the time I went home, I had vomitted twice, had extreme nausea, and was starting to get dizzy. I drove and could not see out of the left eye, all I could see was light and millions of dots and what appeared to be a thin line down the middle. Thank the Lord, He had to have been with me, I got home and went to bed, hoping it would be better next day. Got up with extreme migraine, I have had them off and on for years. Took my medication and went to work. Called the drs office and talked to them. My dr was out of town and they said I had to be seen immediatly. Sent me to a different dr. When I got in the car to go to the dr, I realized I had no periphial vision in left eye. I had to turn my head completely to look to the left. My vision was very blurred. Made it up to the dr and he said I had some kind of thing where a blood vessel had ruptured in my eye and that I must be very careful that it could be indication of an impending stroke. I drove myself back to work, and then home several hours later. Slept most of the week-end and was some better by Monday. Made appt with my regular dr to go in for an exam in about a week. They had me in the chair and the tech put in the yellow drops and I started feeling very strange. Told her, but, she just kind of ignored me. She turned on the blue light to look into my eye and the next thing I remember, was a room full of people , me on the floor asking for a waste basket, I was going to be sick. A friend had taken me and I talked them out of calling 911. I went home and had an appt. with my general practioner about a week later. I of course continued to work! Didn't feel that it would get done if I wasn't there. Felt really bad and was getting a ride to work from a friend. I felt worse as each day went by. The second day, I started seeing things and any time someone would come up from behind me, it would startle me. Around noon, I talked with my friend to see if they could come and get me early that day. They stated it would be a few hours. I was told that app. 1/2 hr later the head nurse came into my office to find out why I wasn't answering the phones. I was just sitting there. She said that I talked but she couldn't understand me. When she got me up, I could barely walk and only staggered. I talked her into taking me home. My friend took me to the ER where they did tons of tests, wanted to keep me, I refused. Agreed that if I got worse during night, I would come back. Returned to the neurologist the next day I had seen in the ER and was told all my testing had been normal. I was speaking better and he suggested I may have had a TIA or something, they did more MRI, MRA, etc and all that turned out normal. I insisted on being sent to a teaching hospital. I had seen 5 neurologist here in this area and millions of dollars of tests and they found nothing. I haven't driven since the day I was taken home from work. I have't worked! I went to the University of FL in Gainesville and was seen by the neurology dept there. I was diagnosed with Disabling Migraneous Aura and Severe Sleep Disorder. They had me on narcotics, app 10 different kinds at different times to attempt to break the aura. Only 15% of the population that have migraines develop an aura and only 5% get the type that I have. Usually it can be broken with narcotics. I cannot tolerate the narcotics. They could not get me to a theraputic dose. I had extreme nausea, and vomitting that finally culminated in Jan of 06 with me not being able to stop vomitting, went into convulsions, and my roommate called 911 and I was in the hospital 10 days with nothing but IV's. My body had started shutting down from the narcotics and I had extreme dehydration from the continuous vomitting. They did dozens of tests why I was there and other than an 24 hour zofran drip and a nasal tube, O2, saline solutin and complete bed rest. All their tests basically showed nothing other than my blood work, the electrolytes where all screwed up. I have been on disability for 2 years now. I am fighting social security for SS disability and have been turned down 2 x and have been in the que waiting to get on the list to have my case appointed to a judge for 9 months. I have been told it could be another 24 mths before I get the hearing because FL is severly back logged. I do have an attorney. I have exhausted my COBRA, that was gone as of 5-18-07. I received a letter from my LTD people who have informed me that if SS is still stating that I can go back to work by 11-07 that they have the right to discontinue my long term disability. In other words, my world is falling apart, I have no control over anything. I have to use a walker to get around. I am in severe pain all the time, through out my body. I have 2 different types of migraines that I get daily and the one is called ice pick and feels like someone has stuck an ice pick in my left eye. I cannot see out of it for seconds up to several minutes and then my vision is so blurred that I cannot read much or do much of anything. I live on valium. I have 2 powerful sleep medications that knock me out at night, one to put me to sleep,and one to keep my asleep longer, but, they give me night terrors! FUN!! I have extreme anxiety attachs and my immune system is shot since I am never around anyone anymore. I have to wear a mask when I do get out. I have extreme photophobia and wear sunglasses all the time. I must wear two pair when I get outside or if I get out at night and there are car lights. I must keep my house dark and have installed dimmer switches in the bathroom. I am so depressed most days I don't even bother to get dressed. My skin is so thin that I bruise very easily and it has now started to break down and I get rashes that turn into bumps that break open and it takes months for them to heal. Oh, I cannot tolerate oders of any kind. I live in a condo and if one of the neighbors goes out on their lanai to smoke, or they cook something smelly, I have to mask up and often use O2. I have O2 around at all times because it helps to shorten the length and intensity of the migraines. Most of the time anyway. I don't mean to go on forever. I just wonder if anyone would like to at least converse. My drs are just shrugging their shoulders and have told me we will just have to wait and see what turns up or maybe I might get better. At this time they are just using pain releiving measures and waiting until something else comes up! My whole life is in limbo, I am very depressed, grouchy and irritable. I really try not to be. I realize that many people have it worse than I do. I worked with dialysis patients for 15 years and have always worked within the medical field. That is something I really miss is the contact with people and taking care of those who need help. I can't even help myself anymore, how could I possibly help anyone else. I'm getting where I just don't care. The medical dr's can't find anything and the head drs want to know why I am there. Of course I have't seen one for awhile. Wonder what they would think now if I told them my true feelings. I have everyone in here on my prayer list. I of course cannot remember each and everyone of you but I have the sight on my list and I hope that maybe, it will help someone. Sorry for the long, long, story. Please believe I understand each of you that feel helpless. I guess there are many of us out there. I really would like to know if anyone has any ideas about SS disability or what I can do now that I have no insurance and may soon have no monies at all coming in. Guess I will end up at salvation army or in the woods. I don't know!! It's really scarey. At least I live in FL and I won't have to worry about the cold in the winter. Maybe I will get fortunate and the Good Lord will call me home. I'm really not nuts. Just frustrated, depressed, and lonely. Thanks for listening. Linda:)Reply Follow This Thread Stop Following This Thread Flag this Discussion
Recognize the risks associated with Crohn’s disease.
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