Links ...
Re: Dealing with the unknown ...
Gee, Judy, I really needed to hear this today!! I am past 60 days on my injections and won't get them again til Sept. 4 after the conference.
The botox is starting to wear off and I have some concerns about attending the conference alone, and have been doing a bit of catastrophizing...the head is back on straight now
and I am doing what you suggest about the fears. I do believe this
bb has been so helpful in gathering information about this disorder
together with the many links and other literature I have gotten my hands on. I believe this conference will be helpful in that regard as well--doctors filling us in on the latest, networking with fellow
blephs, socializing and just having some fun. I am excited about
meeting all the bb folks too. On a spiritual note, my relationship with the Lord has also been very reassuring. When I trust and let go, He always meets my need. So thanks for that admonition today!!
Joanne M. San Diego, CA
Re: Dealing with the unknown ...
HI Joanne,
Don't you even think of skipping out on us at the conference. Call the airlines that you will be using and see what services are available for visually handicapped people. Most airlines will have someone to help you make connections to other flights and to transport you in a little cart or what ever you need. They would be able to get you to the shuttle to get to the motel and from there you will have friends to help you out. If we were driving out, I'd volunteer my husband and myself to meet you at the airport and get you to the motel, but we are also flying and won't have a car.
Do you have someone to get you to the airport? Do call the airlines and see what help they can offer you. You will need to call ahead of time but I believe that most airlines are willing to help with these things.
I know that it is a scary thing and it would bother me to go alone, too, but I know that you can do it. Sometimes we just have to ask for a little help.Shirley in AR.
Re: Dealing with the unknown ...
Thanks for the encouragement, Shirley. I am definitely coming to the
conference--I was just musing about my concerns based on Judy's comment.
I can manage it. My eyes don't squeeze that bad; it's the breathing
that gets tough. But I'm ok and will be there!! Doing lots of self-
talk and I'll probably do some extra meds just for those 2 days.
Thanks again, and I'll see you there. Joanne M. San Diego, CA
Re: Dealing with the unknown ...
hi joanne
i am curious about your breathing is this associated with your
B F i have been suffering from BF for over 2 yrs now but i also have breathing difficulties that seem to more intense when i have to walk or drive along with my eye spasms. please describe what you are going through and if you have found any relief from any treatment.
Regards Russell Collinge
Re: Dealing with the unknown ...
Hi Russell,
There are a few of us on this bb who deal with breathing irregularities.
It is difficult to describe, but basically when the spasming occurs,
I don't breathe normally. Like taking 3 small breaths instead of one
normal one. Rather disruptive and annoying.
Mine feels like it is in the throat--but through process of elimination,
neurologist thinks it is the diaphragm that is spasming. I have seen
an ENT to have my throat and larynx checked and spasmodic dysphonia
was ruled out. No blockage in throat area. It seems that those of us whose voice box is affected (spasmodic dysphonia) will often times have breathing difficulties as well. And, yes it does seem to be somewhat connected to the eyelid spasms. As far as meds, benedryl (antihistamine) is helpful for me. I also
take a benzodiazapine called Serax which is a relative of the popular
Klonopin that most of us are prescribed. This med works as an anti-
anxiety but has some muscle relaxant properties as well. Caution is
advised with these benzos because they can be addictive. I attempt to keep my stress levels at a minimum. I am trying a healthier diet with supplements which seems to be the hardest for me
to stick with. I have a strong faith in God--do yoga and stretching
activities. Nice to chat with you and hope this helps. Joanne M. San Diego, CA
Re: Dealing with the unknown ...
I did so want to come to the conference. I really want to meet everybody. But I have to "skip out". Business is the worst it's been in the 36 years my hubby has worked there. So no extra money for tickets. I'm still reading the board several times a week though.
Evelyn
Re: conference...
Evelyn, I'm sorry to hear that you won't be able to come. I was hoping to meet you. I'm glad that you are still checking in with us. I watched a program on TV the other night about cochlear implants and thought of you. I can't remember (CRS) what show it was on but I believe that the whole family was deaf and they had all gotten the implants. Exciting and painful and interesting all at the same time. Just imagining all of a sudden being able to have some hearing when you have been totally deaf all your life. That would be a strange and scary thing. I believe that you had said that you lost your hearing after you were grown. Anyway, I got way off the subject.
I will miss you at the conference.Shirley in AR>
Re: conference...
Hi Shirley,
I'm disappointed that I'm not coming also.
I'm not sure I would opt for an implant if I'd been deaf all my life. They say it's much harder to learn to get used to one if you've been deaf for a long while. I think that if I had learned signing from childhood, I might want to stick to it. There's a lot involved in an implant. Surgery, healing, hookup. Then changing of batteries every two days or so. Each night the processor has to have the batteries removed, and it must be stored in an airtight pouch or container. Each morning the batteries must be put back in, and the cover put back in place. Then, there is a lot of amplifying that isn't pleasant. Running water, newspaper or paper rustling, etc. is deafening. The toilet flushing used to be almost unbearable, but doesn't bother me anymore. Music is unintelligable for me. At least most music. Guitar is a little better. I'm glad they're working on a program that should help with music. I'm not complaining. It's great to have sound again. But I was deaf for only six months...from Aug.1998 to Feb.1999.
And today I got hooked up to my insulin pump. Gerry and I went for training this morning. Wow, there's so much to learn and remember. We will go for another training session on Thursday. This is getting long, so maybe I can tell you more about the pump and what it does for me later.
Evelyn
--modified by Evelyn at Tue, Aug 07, 2001, 22:53:43
Re: Insulin pumps and cochlear implants.
I know all this has nothing to do about BEB and dystonia, but it sure is interesting to me. I appreciate the insight into it. I know that there are a lot of diabetics out there that might also be interested in the insulin pump. I like to learn about other things, besides my blepharospasm,too.
I hope the insulin pump works well for you. Will you still have to do the blood sugar sticks? The pump system doesn't take care of that, does it?Shirley in AR. Looks like we are going to have another very hot day.
Re: Insulin pumps and cochlear implants.
Yes, I'm still sticking my fingers (or arm, whichever machine I choose. But I try to stay with the same machine most of the time) In fact, till I get my insulin dose just right, I will need to check my blood at least three more times a day than I usually do. I need to do some reading to refresh my memory before we go back tomorrow. I will be changing the tubing, etc. for practice. It's a tricky procedure. Gerry will likely need to help me each time I change it. The tubing must be "primed" to get out all of the air bubbles, and it's a little hard to see the bubbles. Everything will take practice.
Evelyn
Re: insulin pump...
My daughter's best friend is on an insulin pump. She is only 5. They moved to Dallas last summer from Canada and have had trouble finding a doctor to take her because she is on a pump. They said they wanted to take her off the pump and go back to injections and her parents said absolutely not. It has worked very well for her. They use emla cream for weekly sight changes. Hope yours goes as well.Kelly in Dallas
--modified by Kelly Saffell at Thu, Aug 09, 2001, 12:28:16
Re: insulin pump...
Thanks, Kelly. I'm really hoping this works out for me also. This is my second full day on the pump, and it's working great so far. There's quite a bit to learn and remember, but my trainer says I'm doing really well with remembering most of the steps. It will be a matter of frequent reviewing till I learn everything. Five is so young to be a diabetic. I was diagnosed and insulin dependent at ten. So it's been 44 years of injections for me, starting with one a day, then two, then three. So this pump is so nice. No more injections except for injecting the needle which is attached to the tubing every three days. The needle is removed after injecting the end of the tube into my stomach area. I just program the pump to deliver a basic rate of insulin at intervals, then program it to deliver "bolas" doses at mealtimes. Really nifty.
Evelyn
Re: Dealing with the unknown ...
Hi Folks; Its me again. Dealing with the unknown and fears all have a flip side. Funny how things turn out. This thing we all have reared its head shortly after I found a new job. It took about 6 months (June this year) to find out what it was. Was hoping my employer would find some way to accomadate me and keep me working. No luck there so I kept plugging away under the mercury vapor lights and kept hoping that over time I would be able to either change jobs or find someone in the company that could help me. Well, the company decided to do away with the watchmen/security crew and we will all be terminated the middle of Sept. No more bright lights, but no more job either. I'm trying to put a good face on it but the truth is I am really scared. I'm 50 with a wife and 2 little boys to support and right now my mind is racing like a rabid rat trying to prepare a plan. Anyway I really understand facing your fears about "this thing" and still going on with your life. Does anyone out there know any case history or doctor reports on head injuries and Blepharospasm? If you do please advise me. Thanks alot and for all you who go to the conference have a good time. Cliff
Re: Dealing with the unknown ...
Hi Cliff. I am so sorry. First of all you might check with an attorney about any legal recourse that you might have. Some of them don't charge anything unless they win a case for you. It would be interesting to know why they are doing away with the watchmen/security crew. Especially since they would provide no accommodations for you. I think that most of the time that this is a far scarier dilemma for the men supporting a family or a single woman supporting herself and or contributing greatly to the financial support of the family. In general, most of the time women in their 50's and 60's develop this. I'm only 49 and was working but my husband is able to support us. It wasn't such a traumatic thing for me to have to quit my job. I didn't want to but I could financially do it.
I hope some of the men respond to your post.At last years conference there was a lady that had developed Blepharospasm as a direct result of a car accident involving her upper cervical (neck) area. I believe that her first name was Susan. You could contact the BEBRF by email or call them and they might be able to give you her name and number or you could leave your email and phone number with them and they could get the information to her and she would possibly call you and talk to you about her situation. I think that she would probably call you or email you. She was showing people the rose tinted glasses last year for Knighton Optical. The foundation might know of others that were related to an accident or head injury so check with them. Good luck to you and let us know if we can help you in any way. Hang in there. I wish that you would be able to attend the conference. It might help and you might be able to check out other treatment options that would allow you to continue working under certain circumstances. Does your wife work? You might also check into SSD. Do check with an attorney. I think that they might be able to help. Some of you men, talk to Cliff. Shirley in AR.
Re: Dealing with the unknown ...
I agree with Shirley, speak to a lawyer about your dismissal under your circumstances. Did you ever document or keep notes about your attempts to get accommodations for your disability or problems at work? My heart and prayers go with you. I know you must be afraid, but fight the fear with FAITH and think TRUST when you feel worried and take ACTION and BELIEVE that you will be guided and things will work out. Get a packet from BEBRF and consider SSD as an option. I had always believed I had to work or we couldn't make it. We sold our house and downsized to a less expensive area which was closer to my husbands work. I got Disability from work and SSD and we are doing fine. Blessings have poured in ways we could have never imagined. We love our house and where we live and one day at a time things have worked out. They will for you too. "When it is over things will be okay.... if they are not okay....it is not over." Something I heard Joan Borysenko say once.
Re: Dealing with the unknown ...
Cliff,
The person who spoke about her blepharospasm which resulted from a head injury is Susan Blizman. She's the New England Area Representative. E-mail me (nildaren@aol.com) and I can give you her phone number. It's also posted on the BEBRF website under support groups. Good luck!
Nilda
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