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to Maxine's Story
Your web site has been a blessing to me. When I was diagnosed with Sjogren's on a Friday afternoon, I had never heard of it. As the evening went on, I realized I needed to talk to someone. I prayed and asked God to help me. In a small town, I didn't think there would be much support here. Within the hour I was on the web and I found your page. There was everything there I needed. Reading the letters was like the support group I needed. Not that I would wish this terrible disease on anyone but the letters were a tremendous help to me. In the beginning, before the doctor told me I had Sjogren's, I was
telling him I felt like I was 110 years old. My flesh was very
sore. I felt like my bed was my worst enemy, it hurt me so bad. Not realizing it
was my own body, I bought the best mattress this reputable company made. Anywhere it touched my sore flesh, it hurt so bad.
I couldn't believe it wasn't
hurting my husband also but I knew he wouldn't lie to me. I still thought it was
the mattress. I was upset because I paid so much for this and it was torture
for me. I thought I'm not going to let them get away with selling mattresses
like this at the price it cost. I was going to call the networks and ask them
if they wanted to come to a mattress burning and get the whole story. They
agreed to take it back. I picked out one made by another company that been
around for years. Still not realizing it was my body, I didn't trust the
store. I was wondering where they were getting these mattresses. Even though
they looked good I didn't think the company would make something like this.
I went to the factory where this new one should of been made. I asked them if
they sold to the store I was dealing with. I was told when they get the order
they build it. I got the other mattress and It was doing the same thing. I just
couldn't stand for it to touch my body. I finally decided it was me after
neither one hurt my husband.
Fortunately, I was diagnosed within one to two years. My family doctor was so patient with me. He listened to me and he tried to help me. He ran lots of tests, and didn't act as if it was all in my head. I thank God for him every day. I was 68 when my bad complaints started. I had no quality of life at all. I couldn't do anything and was totally exhausted. If I took a shower, I had to lay down and rest before I could get dressed. I had a wonderful, caring and understanding husband. He knew I was a hard worker and loved to work. At this time he was doing most of the work. If I had a better day, I'd do what I could which was hardly anything. I was extremely dry, all parts of my body. Dry eyes that felt like I had sand in them. Every night all the parts of my mouth were glued together. I would take my time to get liquid in it. One night I was so tired, after making a 240 mile trip, I just pulled my tongue loose, and tore the skin off the inside of my jaw. I didn't know what was wrong with me, I felt like I had something bad wrong with me. I was to the place I couldn't hardly turn over in bed, hurting joints and severe muscle weakness. I could hardly get up from the chair or commode. I still have all of these problems. Sips of water all during the day helps my eyes and mouth but not completely. I use a humidifier all over the house when I'm so dry. I'm sure it affects my brain, it just doesn't function on those days. I'm also like a drunk or doped up person with blurry eyes and actions too. The rheumatologist says it doesn't affect the brain. He says I don't have a salivary gland on the side of my jaw that swells up. Cleveland Hospital says I do. After three trips, I never went back. He did put me on Salagen but I had to quit taking it because I couldn't afford to buy it. I quit when a friend sent me an article about some herbs that helped dryness. I gave it a try and it did help and cost a lot less. There were so many changes in my health that I decided to call the company. They said there were no known side effects and that they don't get that information. I looked it up. What I read I did not like. I took no more and threw what I had away. One of them said it could cause cancer. After being on it for a year, I quit taking it. I had breast cancer develop soon after I went off it. A year later I had to have the other breast removed because of cancer. No one in my family ever had breast cancer. I'm not saying this caused my problem. I said all of this so you will make sure you know what you're taking. I feel that I was a fool. My eyes were so dry. I couldn't stand bright lights. I found good sunglasses at WalMart. I had to wear these at church. The little kids looked at me funny and I know they were afraid of me. I had to wear them when I went to shop at WalMart because of the lights. The eye doctor gave me Refresh Endura eye drops and they helped my eyes a lot. I don't have to wear sunglasses anymore inside. The kids are still leery of me though. The eye doctor put plugs in my eyes two years ago and that helped a lot. I have a skin problem too. When I get burnt, I
get a red circle spot that ends up with red blisters around it. Doctors haven't
been able to clear these up. I bruise easy and under the skin where the bruise was
I'm getting what appears to be permanent brown spots.
My skin is very dry.
I feel that my husband is the only one that sort of realizes how I feel. He said the minute he sees me in the morning he doesn't even have to ask me how I feel. He can tell by looking at me. I know I can't expect people to understand how I feel. If you haven't been there, it would be impossible. I would rather people didn't even ask how I feel. If I told them the truth, they would never believe me. I usually say fine and let it go at that. When I knew I needed a
lot of water, I made
sure I drank 8 oz. every hour and some in between. There is a dentist in the
family and he told me he has three Sjogren's patients. He told me to buy a sports
bottle and sip water all day long. This has helped me more than drinking lots
of water. This helped my sore flesh, when I was able to get the water I needed.
I'm still fighting exhaustion. I give myself an hour to shop for groceries and other needs. Sometimes I can only stay a few minutes or
I'm
sitting on a bench. I always get food so we won't have to cook . It does me
in going to the store. I do have some good days. Even though there
are more bad
than good, I'm so thankful for the good ones.
As I think back, I think I've had Sjogren's all my life. I just think it didn't get full blown till late sixties. I never could pass up a water fountain, always carried something to drink with me. When I was seventeen, I already had my teeth filled three times. A dentist I met told me if I let him fill my teeth, he would guarantee me that they would stay in. He did fill them and within three months they started falling out. At twenty two I had false teeth. I never regretted getting rid of those teeth. I decided to write this letter because this morning the thought ran through my mind that I might get to the place where I can't dress myself much longer. I'm having lots of trouble now. I went to your web page to read all the symptoms again. I have every symptom you have listed. I realize there are a lot of people worse off than me. I'm thankful I'm as well off as I am. I don't want anyone to run into the problems I did with herbs Thank you so much for supplying this web site. There's no way I could put into words what it meant to me. GOD BLESS EACH ONE OF YOU Maxine
Story Copyright © 2003-2007 Maxine Page Design Copyright © 2003-2007 Lynne Messina
Disclaimer The author of this page does not promote, support, or recommend any particular treatment or medication for any medical condition. The opinions expressed in stories or links are the responsibility of their authors. No treatment should be undertaken without the supervision of a physician. |
