Re: Dealing with the disorder ...
My day was as normal as it could be after having a stroke a couple months before: getting used to Coumaden, etc., and restoring interrupted hand-eye coordination.I've had BEB longer than anyone else here, I suspect, and I'm living with it. Much beyond any expectations I could imagine 12 years ago, when I finally got the problem diagnosed. I am able to drive and work at my volunteer places and hang out on the Internet. Most of the time it no longer bothers me at all, until I read of someone new to the condition and my heart breaks all over again. Be of good cheer! --- Lynn
Re: Dealing with the disorder ...
Yesterday( this is the middle of the night, my cat woke me up), was spent recovering from the really bad eye spasms the previous day. I didn't have as much pain. It is now raining here and I am hoping that my eyes will get better after this weather settles. I am now 4+ weeks into my injections and still having spasms. Damn it.
Re: Dealing with the disorder ...
Yesterday was a 60/40 day for me. In the morning I was able to get some painting done, which really made me happy. The creative side of me is starting to flow again. However, later in the afternoon, the spasms came on strong and I had to stop and take care of myself. Spring is only 18 days away! Denise
Re: Dealing with the disorder ...
Comparisons and different situations-that's been interesting for me lately. My eyes had been doing rather poorly but they managed to do fairly well (much better)when I had to be up for the task of making funeral arrangements for my mother who passed away recently. There were lots of people coming and going from my home and a family or two stayed with us at different times. Over a period of 8 to 9 days while everything was going on, I was up early and we would go to bed late after sitting around talking and going through old photo albums. I thought that the phone would never stop ringing. I would have some "bad" times throughout each day but overall, my eyes did surprisely well. Some "directed" lighting and "constant talking" by others would close me down but it was short-lived. The morning that the last of my company left, my eyes were back to their poor state again(even before they left). I guess that I knew that the end was in sight and I could relax a little. I did not change medication in anyway during this time. I almost wish for the company to return (especially if people would keep bringing food over :-) ). I know, I'm bad.Shirley in Arkansas with BEB/Apraxia
Re: Dealing with the disorder ...
I am not going to just relate how yesterday was but how it has been since Feb 18th when I got my last Botox and the plugs" in my tear ducts.Positive thoughts: I wake up each day - that is a plus. I take each day as it comes. If I feel good I stay up and check out my e-mail and the BB. Altho "good" is not really the right word but it will do for now. Before the last injections I had finished my table/magazine rack but can't seem to find the inspiration to get started on another project. I guess that one should be in the non-positive statements. Most days I just "piddle" (a southern word) On the non-positive side, I a still dealing with the dry eye and I think either the "plugs" have fallen out or they are not doing the job. Sue Parker has given me some excellant ideas for keping moisture in the eyes at night. I guess it must be our oil furnance heat that dries them out during the day. Kathy in Atlanta can sympathize with me because I have headaches every day mostly from the eye squeezing and the Botox I "got" (another southern word) has not worked yet and I don't think it is going to because I wake up each morning with my eyes closing and squeezing as soon as I get up. That is the sourse of most of my headaches. It has been cold lately and I can't wait for spring. I think I will feel better then. I hope so. I have to wait now two months to go back. He said he was injecting in different places and hopefully the Botox would "work". It has not "worked". Shirley, I am very sorry about the loss of your mother. My mother died over 40 years ago and I still miss her and think of her most every day.
I understand about the busy part also, as long as you were busy and dealing with people your eyes were still acting up but you didn't have time to think about it. Your thoughts were elsewhere. When I can be real busy it doesn't matter how bad my eyes are I seem to forget about them. Hopefully I can get inspired to paint something else. Also right now I am dealing with some family problems. My youngest daughter has to have surgery Monday for a kidney stone and my Granddaughter who is just now getting over her surgery, she had a cyst on her thumb and they had to remove it and graft bone from her wrist to the thumb where they had to remove part of the bone to get the cyst out. Now she has found out she has gall stones and goes MOnday for an ultra sound in the morning and has the cast taken off the hand that afternoon. She has a year old little girl (Abby)and if shse has surgery she won't be able to pick up Abby for a while. Her husband is scheduled for knee surgery on March 17th so right much is going on. My daughter took family leave to help take of Jenny while she had the cast on and now it looks like she will have to be out longer. But all in all these are not "bad" problems but they drain you because they are your children and Mothers/grandmothers can't help but woprry about their family. I oldest grandson had kidney failure and is on dialysis. Would anyone like to donate a kidney. He needs one. Sorry to be so long winded but once I got started I couldn't quit. Joyce in NC - a cold rainy day but I 've got to go get my nails fixed. That will "perk" me up. Then we are going out to eat fish tonight. Wish you'll could come and go with me.
Re: Dealing with the disorder ...0pps!!
Opps, Sorry gave credit for the ideas for keeping moisture in eyes at night. I should have said Ruth Kellogg - she told me about the saran wrap over each eye, afraid to brag yet, used it for past two nights and worked just fine. Sorry Ruth....Joyce in NC
Re: Dealing with the disorder ...
Joyce, sorry about the botox ineffectivness and dry eyes. Better days
to come. Also it must be difficult to be dealing with all these health challenges in your family. Tell me just a bit more about your grandson with the kidney failure. Has it been labelled a disease like nephrosis or nephritis? 40 years ago my younger brother who was 12, died from
kidney failure--he had nephrosis. At that time, there was no dialysis or transplants so there was really nothing any of us could do to help
him. Left some scars on the family including my parents, other younger brother (NYC firefighter) and myself. Modern medicine has advanced
so in some areas and others seem to be landlocked!! Joanne M. San Diego, CA
Re: Dealing with the disorder ...
My grandson is 25. When he was a teenager he had a kidney problem and he went to Baptist Hospital in Winston Salem for a biopsy of his kidney. They said that he had Bergers Disease (pronounced Ber-gay) but after a year or so it must have gone in remission because he had no other problems with the disease. About a year ago the family called and said that he was back in Baptist Hospital with his kidneys again. He had felt bad for appropx a week and one night his head was hurting so bad, he said that he sat in the shower with the water just pounding on his head trying to find relief.
He went to the hospital and after some testing they sent him to Baptist and they said that he would be on dialysis until they could find him a kidney. One person in the family tested as a possible match could not do it because she had had a history of kidney stones. His father has high blood pressure and that affects the kidneys so he couldn't do it. His girl friend was a close match but she is one of those skinny/frail people and Kevin was afraid for her to give up one of her kidneys because she might have more health problems. I would give him mine in a heartbeat but as you get older you lose some of your own functions and I probably not operating at top effeciency.
Some people they say can live 20 years on dialysis but they don't give Kevin that long - maybe 3-4 years if that long. You can imagine at 25 it is very depressing. He can't work, and I am assuming that the Kidney Foundation is helping with his treatment. He has to have the dialysis 3 times a week. I pray everyday that God will find him a kidney. He has a litle boy by a former marriage and would you believe they came and put him in jail because he couldn't pay child support. His former wife did it just for spite. She knows the condition he is in. They let him out fortunately. Life is not fair for any of us - is it? Joyces in NC who loves her grandson very much. Kevin is my first grandchild, his birthday is Jan 16. Abby my last great grandchild's birthday is also Jan 16.
Re: Prayers for You and Your Grandson Joyce
My heart bleeds for both of you, Joyce. Your family is going through some terrible times - I will pray for a brighter future for you all.Hugs and Best wishes. June in Toronto
Re: Dealing with the disorder ...
Hi Joyce,
My heart also goes out to you. It's so hard to see someone you love in pain and in need. Keep up your courage.
Evelyn
Re: Dealing with the disorder/Joyce ...
Joyce, I am very sorry to learn of all the problems that you are having at this time. Regarding your eyes, I know somewhat of what you are going through, as every day for me has been terribly difficult for some weeks now. The Botox only does so much, and creates other problems. The daily pain and headaches get very tiring. So I pray for you and all of our fellow blephros, and for a cure to be found. I also am praying for you in regard to all the family members that are having such problems-daughter, grand-daughter, grandson. Thsi is added stress for you. Praying that a kidney will be found in time for your grandson, and that you will have needed grace and strength in this hard time. Thanks for sharing your needs. We all wish you the very best.
Tim in PA
Re: Dealing with the disorder ...
Happy to say I had a good day yesterday. I am a month into my botox injections, was able to handle my job for the day and also able to
be without my benedryls and did not need increased dosage of the benzodiazepine. My breathing irregularity and grimacing from the meige still evident but a bit less disrupting. Went to my dance
lesson for 1 1/2 hours last night and did ok. I am so grateful for days like this. I think the combination of just a bit of relief from the symptoms and the idea that my body is also adjusting to them made the
difference. Who knows about tomorrow and the next but Judy asked
about yesterday and there it is!!!! Joanne M. San Diego, CA
Re: Dealing with the disorder ...
Yesterday I was looking forward to going out in the evening for the very first time since Christmas (sick with flu, etc. since then). We had tickets to see Gilbert and Sullivan's "Patience" - a colleague of my husband's was in the production. The drive there was awful, even as a passenger (bright traffic lights, dark night) and the theatre was so dark and the stage so bright...oh my! The eyes really misbehaved and I spent most of the evening with them closed shut. The show was great, I'm sure, but I just couldn't enjoy it (except for the singing) I was so very uncomfortable. I'm still getting side effects from my botox injections that I had almost 3 weeks ago (no sinus or tearing this time though, which I am very pleased about). I was so glad to get home, put ointment in the eyes and go to bed. I will have to continue doing my `partying' during the daylight hours - roll on spring!June in Toronto (beb/meige) where its back tomild weather again and a little bit of rain.
Re: Dealing with the disorder ...
Yesterday was one of the worst days since having beb.
It has been 30 days since my injections.They lasted 5 days.
I really feel bad most of the time.I should not complain the rest of my family is ok for now.
Joyce my prayers are with you and your family
My son was sick for 6 months last year. that was a real bad time.
Take Care and God Bless
Colleen in IL
Re: Dealing with the disorder ...
My day started out wonderfully. I had Botox the day before and it was the best I felt in 4 1/2 years--since this started. No photosenitivity. I was an absolutely normal person. Took a nap and woke up in stage 2. I have 3 stages, the last one I stay in bed most;of the time . Stage 2 , I can drive some of the time . It varies. Crazy/ But what a blessed hour. Ann Doyle
Re: Dealing with the disorder ...
Yesterday and today have been pretty good days. The day before was terrible. The weather is up and down...snow then in 50's then back to the teens at night tomorrow.
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