Re: When do you go on short term leave from work?
Colleen,
In my own personal situation, I got to the point rather quickly that I could no longer work. There was no need to ask anyone,(I'm not being critical here) I simply could no longer do it. I finished out a school year (I was a school nurse)and didn't really even do much the last week. Within two weeks of being home, I progressively got worse and was unable to drive or walk down a hallway. There were no eyes at half mast. They were squeezing closed most of the time. I could barely get around without hurting myself. By the time school started up again, I was not much better as the botox wasn't working and I took my accumulated sick leave and then resigned. There was no way that I could have functioned in any role of my job or any other nursing job for that matter. I applied for SSD over that summer.I don't know as anybody is going to be able to tell you when you should go on short term leave. Only you know how you are doing and what you can and can't do. It will have to be your decision to make. The doctor just has to go by what he sees and what you are telling him. Physicians are different and will approach this in different ways. I'm sure that others will comment. It wasn't really a question for me but others probably find it to be and they may be able to give you some other insight. I really think that you will know when you can no longer work, though. Just my opinion. Shirley in AR.
Re: When do you go on short term leave from work?
I related what I did to Ann Doyle I think it was last week. If you can't find the post I'll repeat it or you can call me. My toll free # is listed in the newsletter under Middle TN Support group also my email address is there. I went from 30 days family medical leave, 90 days of STD, LTD, SSD and a year of Medical Leave before I was officially terminated. I now receive SSD and LTD from work. Like Shirley I could no longer get to work or do the functions of my job. It was a no brainer. I had worked with progressing symptoms for 5 mostly miserable and very stressful months. I loved my job, but for me it was the best decision for me.
Re: When do you go on short term leave from work?
I simply told my doctor that I couldn't do it anymore and he put me on disability almost 2 years ago. I worked for 4 years with beb and that was too long but I just couldn't accept the fact that I was disabled in my 20s. I made the decision when I woke to the realization that I truly wanted to die. Then I knew that my family deserved better and so did I and I had to give up something and it was my career. I have improved enough to care for my kids now that I don't work and that was all that I could hope for. I am on LTD with SSD awaiting a hearing. My doctor is supporting me 100% all the way.Kelly in Dallas
Re: When do you go on short term leave from work?
Thanks all for your responses. I am glad Kelly that your doctor is so supportive. I received a call from the nurse at my neuro-opthal's office today and she informed me that in response to note to the doctor that he NEVER puts anyone on disability for THAT. She said I will just have to work through it myself.I think it may be time to find a doctor that is at least willing to listen to how this is impacting my quality of life. I am going to the support group in Philadelphia on Sunday and may see what the doctors there say about how debilitating this thing is. This doctor told me it doesn't progress and get any worse. I think I will suggest he do some research and find out exactly what Blepharospasm is and how it really impacts our lives. Coleen in Central PA who is out going to let a doctor make me feel that I am not a part of the team when it comes to my health.
Re: When do you go on short term leave from work?
I am so sorry that your doctor isn't more supportive and compassionate. He definitely doesn't understand how hard it is to live with this. I am having such a hard time right now it is unbelievable. I keep praying to make it the 2 weeks until my next injections. I am going to have to have my 1st grader take the bus home because I just can't drive the 1 mile to school in the afternoon to pick her up anymore. I'm glad you are going to a support group meeting and hope that you get the info that you need. And, by the way, we can all attest to the fact that you do get worse! I know I have. Mine began in eyelids and has spread to jaw, lower face, and throat over the last few years. I spasm so bad when I chew at times it is almost not worth eating but unfortunately I'm only 95 lbs and really need the calories! You are in my prayers.Kelly in Dallas
Re: When do you go on short term leave from work?
Kelly I'd be glad to help you too....My doctor wrote a one page letter that was excellent, I knew my rights because of Judy, and I had records from 2 doctors. I focused on my inability to perform the functions of my job and that is what the doctors focused on....Botox and meds weren't effective to change that. Don't give up.
Re:Throat/voice
Kelly, do you have hoarseness of your voice? Mine is getting so that I can hardly get words out some days ... this happened to be one of them. I can't say that I really choke, but some things are a bit difficult to swallow. Needing to lose weight, it wouldn't be so tragic if I did have swallowing problems. But I really don't want that either. My doctor says that my voice problems are from Meige and that my blepharospasm is atypical, meaning, I guess, that I do not react in the same way from it as most of his other patients.Sorry you can no longer go pick your daughter up. But you can be there to give her a big hug as she gets off the bus. I think this disease has given you a special bonus of time with your little girls that you might otherwise have not TAKEN. Sally in North Idaho
Re: Re:Throat/voice
Sally, You are exactly right! As awful as this is, I have more time with my girls than I would otherwise and that is my blessing. My daughter will be the first stop off the bus and she is excited about getting to ride. I'll just meet her at the bus stop everyday instead-I'm still not ready for her to walk the short distance home alone. (Which is really sad this day and age because I remember by her age I was all over the neighborhood on my bike alone but we have to raise our kids differently now) In answer to your question, yes I do get hoarse. I have allergies and kept thinking it was just that at first but I now think it is the meige. I can always get the words out but I do have a hoarse voice alot of the time. My choking has gotten better and now I'm having problems just chewing. It's almost like when I chew all my muscles get overly excited and I have to be careful not to bite my cheek and tongue. My eyes and throat spasm more as well. I can't wait for my next "fix" of botox!!Kelly
Re: When do you go on short term leave from work?
I was told that by 2 doctors...and other misinformation like, "no one gets SSD for BEB"...from the BB I knew better, but finally found one who understood. Surprisely enough both these other doctors have had a change of heart. I educated them with a social security packet from the foundation. Just keep looking for the right doctor for you and have the foundation send that doctor a SSD packet. Don't give up, be persistent, and stubborn and educate yourself. Judy's posting from Nov. 19, 1999 helped me as well as the packet. Call me if you need help. I can be a Tiger(I mean advocate who is very assertive).
Quacks and their language ...
Coleen:Contact the BEBRF office for names of doctor's in your area. His response is unacceptable. Were he the one with the disorder, it would be quite a different answer. You actually have paved an excellant path with your boss being the one to suggest the disibility. She is the one that needs to put you on it. I'm assuming that your company covers you for disibility since she suggested it. Call your HR department if you have one. You are a liability to your employer if your job is impacted. It is in their best interests to have you out of the office. (You could sue them for liability if you were hurt on the job when your eyes closed.) They are well aware of that fact but are trained not to mention it to you. That will work greatly in your favor in obtaining the needed coverage. Take care, Judy
Re: Quacks and their language ...
Both doctors who initially would not help me were on the BEBRF list which is what shocked me when I found them to be so insenstitive. Like I said, recent feedback after they were guests at our support group seems to indicate they are showing a lot more openess as to how disabiling this can be and are even referring people to Dr. Anderson for surgery when they use to say very negative things about him.
Physician list ...
Good point!Knowledge is probably our best tool to use. JB
Re: When do you go on short term leave from work?
Hey Kelly I also have been talking to my doctor about disability. He was very supportive. He didn't want me to make any decisions until I had my recent surgery. But he did say that he would back me 100% when I do. I am happy to say after being 100%non responsive to Botox, that I have had some success with the limited myectomy. I had it 8 days ago, and my eyes are open for the fist time in 1 year.I also wanted to say that just before surgery he gave me prednesone. I also had some good days on that. Just a thought. I am also on Artane. Good luck to you on your decision. Maybe it is time for another Doctor to take a look. I am so thankful I found my doctor when I did. Good luck and God bless.
Nancy MacDonald - Massachusetts
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