Re: Just someone to listen
Hi Dianne,I, for one, am happy to be here to listen to you. There are so many problems in your life right now and it must be terribly stressful trying to sort them out. First thing you need to do is take care of your children and your health problems. Are the doctors working on the blood pressue? Your job stands out as the major hurdle to get over before you can get on with the next step. It does sound like it is becoming too difficult for you to handle, but I don't know your financial situation or what is available to you through the school district in the way of compensation or disability pay. Is there someone in the educational system there who can spell out these answers for you? You might also call the Human Rights Commission and ask them for advice. (It's free; I called once and they were helpful.) How much time are they giving you in which to get a degree? How many credits do you need? I'm assuming you have some college already. Is it possible to get what you need through correspondence course? Haven't you mentioned working two jobs? What is your second job? Are your children old enough, and willing, to be of more help to you? I'm just trying to give you some avenues to explore in sorting out your needs. All this stress is not helping your BEB symptoms a bit, which I'm sure you know. Has your doctor any suggestions as far as managing your job? Someone will answer you about Myobloc. I've not heard many good reports on it, but that's not to say it's not working in specific cases. Try to stay as calm as possible (difficult, I know). Talk to us here on the BB or via e-mail anytime. There's always someone around to listen and CARE. Please keep us posting on how things are going for you and what answers you are getting. Find one thing (maybe a flower or budding tree) to focus on and enjoy today. Better days will come your way. Sally in North Idaho who is looking at a crab tree, just beginning to bud out on a couple of branches.
Re: Just someone to listen
Hi Sally!
Thanks for answering back. My medical doctor is working on my bloood pressure.
In reply to the disability, I talked with my insurance agent with the school system I do have a short term disability and then a long term that would kick in. Right now I'm only gettting half a pay check so it couldn't be any worse
As for the degree they want us to go back to school for that and I can't drive anymore. It's also hard for me to focus on reading anything for very long. Getting a degree in the educational field is the last thing I need right now. I have a 9 yearold son with a learning disability in written expression, reading and such, I need to be at home with him at home at night helping him. My 15 year old daughter has been my guardian angel. I don't know what I would have done without her.I only work the one job but try to help take care of my dad with alzheimer's.My doctor and I have to have a long talk next week. Thanks!
Re: Just someone to listen
There's also a myectomy. Most people need less Botox afterwards. Shirley knows more about it. Ann Doyle
Re: Just someone to listen
Hello Dianne,
I am sorry to hear things are not so good at the moment. We all know how you feel as we have all been there at some point. I was diagnosed in January with BEB and I have been trying to come to terms with it since and I know it is a very hard thing to do. This week has been good for me(touch wood!)although I have found myself crying on the way to work in the privacy of my car. I think just the reality of it is still sinking in. Up until just recently I have been struggling with work and taking care of my 13 yr old daughters needs. I am 43 and I am on my own with my daughter and although family tries to be supportive, they have a hard time understanding so I struggle to take Nicole to her path finders group each week and the outings they have planned. I have been fortuate in that my second set of injections have been effective (I am able to drive and get around quite well) and it has been 7 wonderful weeks so far and I try to stay very optimistic I am striving to be able to last the full 3 months with being able to drive! (but if I can't try for my goal with the next set if injections)
Stress is such a key factor in how you are feeling and I know it is tough to find a release for it. I have just bought a sound therapy box and have been using it for 2 nights now when I go to bed and I have to say it has worked marvelously. I do however still wear the night mask but seem to be having a problem with it now. I am waking up during the night and I don't have it one and I can't seem to find it! God only know what I am doing in my sleep. Perhaps my cat, who sleeps with me is very curious about the 'masked women' and playing tricks on me :) Also, for some reason, I have not needed to use the night ointment and have needed very little drops during the day.
Try relaxing through out the day. Take a long soak in the tub with lots of bubbles, some wonderful relaxing music and think of nothing but a warm summers day by with ocean with rolling waves, and a nice cool margaritta.............this always seemed to help me feel a little better if only for a short period of time anyway.
I know you will hear from many on the bb. I hope you begin to feel better. How often are you getting the botox injections?
Take care and post when you can.
Debbie who had to leave work today due to Nicole coming home sick from school.
Re: Just someone to listen
I usually wake up at 2 AM and stay awake 3 or 4 hours and then take a nap of 1/2 to 2 hours . Sometime during the day, I nap for 2 hours sometimes 15 minutes. At first it bummed me out but I don't have to work and it doesn't make any difference when I sleep. That might change but that's the way it is now and it averages out 7-8 hour per day.I oviously don't have children to take care of anymore either. Ann Doyle
Re: Just someone to listen
I'm here listening Diane. You sure are going through a turmoil right now. Sounds like you should take that short-term disability leave then consider the long-term. I believe in one post you said you were a single parent plus looking after your Father. I've been there, done that and know how hrd it is. You have initially to work on the stress and if that means applying for short-term disability, go for it. Without the stress reduction you are not going to help the beb and get the botox to work. I've had a lot of stress since December and this time around my botox has hardly worked at all - and usually I can go 4-5 months between injections. Please try and keep your chin up - there sure are better days ahead of you -one step at a time. Best wishesJune in Toronto where the day is beautiful.
Re: Just someone to listen
Dianne,You just sound so overwhelmed. I really don't think you should quit your job, but should use the STD and give yourself a break. Think of it as using some of that insurance that you have been paying for over the years. I'm sure your doctors would write a note for you. You could also just ask your doctor for a note keeping you out of work till you have an update with your nuerologist in June. That way you can give yourself time and tell your bosses, that you can not make a decision about next year till after that appt. I also did some research for you. I hope you don't mind. There is an agency in Cary NC called Volunteer Caregivers. They are a group of volunteers that run errands, groceries, do light house keeping for free! Their address is 975 Walnut St., Ste 311 Cary NC 27511. They serve all of Wake County. Now I don't know for sure where you live, but since you go to doctors in Cary, I figured that would be the place to start. Give them a call and I'm sure they can give you some relief. The klonopin is probably bringing you down a little too. which maybe why your crying so easily. Be good to yourslef.
Take Care
Denise
--modified by denise mckew at Wed, May 01, 2002, 16:59:14
Re: Just someone to listen
DianneI have been in exactly the same place as you. You've heard the expression "she took to her bed" well thats exactly what I did for several months. Fortunately I do not work outside the home so I could manage to do that. Unfortunately I hid this from my husband and family. Just this board knew what was going on. I agree with Denise about the Klonopin. I understand many people on this board take it but I just asked my doctor about it and she said the Paxil is new and has less side effects. Also if have just been put on it you really have to give it time to work. The paxil can take up to 6 weeks to work. I just started on Paxil yesterday and the only side effect so far is the strange taste in my mouth. That should go away as my body gets use to it. I also take Lorazapam for anxiety. I fought it for a long time taking meds. I thought that I would be addicted. I probably am now but could not get through the day with out them. The exhaustion from all the stress is one of the worst part of this disorder. Rest whenever you can and keep on this board. Everyone care about you and sends their best wishes to you. Catherine in Calgary who is finally out of her funk!
Re: Paxil
I have taken Paxil for about three years now and do well with it at the lowest dosage (10 mg., I think, would have to go look). Higher than that was too much. Side effect have not been noticeable.Sally in North Idaho
Re: Just someone to listen
I have oh so been there! I continued to work as a CPA for a while and finally went on STD then LTD and finally social security disability in Dec. I have had beb/meige for almost 7 years (diagnosed 6) and my girls are 7 (in 2 weeks) and 4. I do take klonopin but only 1/4 tablet 4 times a day. I also recently started Parsitan (from Canada) and it seems to be helping with the meige. I would highly recommend you use your short term disability. I fought it for a long time even when my family, friends and boss were encouraging me to do it. While life is still VERY challenging trying to raise my kids, it does help not having the career pressures. I just registered my youngest at a new preschool for next year because the 4 mile drive to her current one is just too hard for me. I would also encourage you to be open with friends in the community about your condition. I wasn't at first and then even when I told people they still didn't completely get the impact that it had on my life. The article that I just did for the local paper has made all the difference in the world for me. People are coming out of the woodwork- offering to help my husband coach soccer to take the burden off of me, helping me drive the kids places when Aron's at the fire station...Denise-where did you get this info on Volunteer Caregivers? I have tried to find something like that around here and so far all I have found is a home health agency that will drive me for a minimum of $64 and they aren't crazy about the fact that I will have a child in a carseat with me. Kelly in Dallas
Re: Volunteers/Kelly
Kelly,I found it on the internet. I worked at a Home Care and Hospice agency at one point, and they had a huge volunteer program that gave me the idea. I search under the county & community services and eventually came up with it. I'm thinking that most areas now have a homecare agency - they usually are good about forwarding people in the right direction for help. The United Way is also a place to check with.
Take Care
Denise
--modified by denise mckew at Thu, May 02, 2002, 08:35:10
Re: Just someone to listen
A lot of people who take klonopin take zoloft because one of the side effect of klonpin is depression. You won't feel immediate relief. I taked 4-6 weeks to take affect. I know I take them both. Started off with just klonopin but got depresses/ Zoloft helped a lot. It doesn't make me feel high, just normal. Ann Doyle
Re: Just someone to listen
Hi Dianne, we're listening to you. I feel your pain.
Suggestions:
1. Take short-term disability and do it soon.
2. Tell boss that you will be unable to make a decision about future continuing employment until you know how well your treatment options are going to work for you (and that could be months).
3. Call your doctor back about your Klonopin dosage and drooling and shakiness. Let him or her know that your depression is worse and you are crying a lot and feel like you are going to have a nervous breakdown. Be aware that the Klonopin itself could be contributing to some or all of these symptoms or making them worse. Or you may need to be on a much lower dose. Many of us get by with .25mg two to three times a day. Many people have problems with sleep if they take a nighttime dose. I still can't figure the night dose except to get used to the medicine if it makes you sleepy.
4. If the BOTOX worked for the first two to three days, I personally don't think that it was the BOTOX that made the improvement. It usually doesn't even start to work until a few days to 2 weeks after the injections.
5. It is of utmost importance that you find a doctor that is very, very familiar with Blepharospasm. Ask them how many patients they see with BEB.
6. Are there any friends or family members or organizations (possibly church) that you could enlist some help from for a short time. You can't do this alone. Talk to your children but let them know that they are not responsible for your problems or your care. They can help with some things, though.
7. You may have to find other help for your father, if possible. You need to take care of yourself.
8. Totally forget about going back to school right now. It ain't gonna happen.
9. Cry, then find something-anything to laugh about. Enlist your kids help with this-they love you.
10. Have a plan and arm yourself with knowledge about BEBShirley in Arkansas
Re: Just someone to listen
Dianne---Yes, I have been there and two years later have my life back--because of the BEB bulletin board and a wonderful doctor and family and friends..It has taken me a while to accept I have BEB and Apraxia and it is not going away. I have had surgery that gave me my life back and get Botox every seven weeks...If I could only go 3 months like everyone else seems to do. Keep posting on the BB and you will find friends and inspiration like I did. I have learned so much from people posting. Every case is different and requires a different plan of treatment. It is so frustrating at times but eventually you will find what works for you. It took me one year to learn to listen to my body...when I am tired, I need to rest. I can't always say "Yes" like I did before. I need my strength to cope with what I have and what I have left over, I can share and be helpful to others. We are listening to you...Just know we are there to help.
Re: Just someone to listen
Shirley
Hi this is Irene I got out of the doctors office yesterday with very little bruces those second injections were so hurtfull.she injected a little more than the last time. She said that the medication on the Botox wore to quick because it was just a little . This time she used up 40 units. And I felt those sting .Shirley I'm going back to work Monday and hope everything goes well. Though I've been thinking how much should I tell my boss about my illness. He called me about a week ago and wanted to know if he was going to need to open my position.I told him that I was planning on going back. See what Happens.
Today I'm having a a good day. Little blinking but not a whole bunch.
Take Care
Thanks for everything you do
Irene
Re: Just someone to listen/Irene
Hi Irene. I'm sorry that your injections were painful. You might ask her about using EMLA cream next time. It is a prescription numbing cream that you apply very thickly every 15 minutes for 2 hours prior to your injections. You would have to get the doctor or her nurse to show you where to apply the cream around your eyes.
You might contact the BEBRF and get some of their informative phamplets on BEB to give to your boss and co-workers. You can tell them about BEB but you won't be able to tell your boss if you will be able to continue working or not. You really don't know at this point how the treatment is going to work for you and the degree of severity of your symptoms. You'll just have to play it by ear. The summer break is almost here.I'm glad that you are having a good day. I was doing fairly well for about a week and the last couple of days have been worse for me. I got my BOTOX 7 weeks ago and I believe that it may be starting to wear off as I am having a lot more squeezing. Do what you can on days that you can. Enjoy your good day. Shirley in Arkansas on a cloudy, rainy day.
--modified by Shirley-Arkansas-USA at Thu, May 02, 2002, 15:10:50
Re: Just someone to listen
Hi ShirleyI was kind of disappointed 5 days have gone by and my eyes are dropping some .They injected 40 units the 2nd time. and the 1st time it was only 35 units. But this time I got a bruse and I was ready to give it a second try at the job site. I really don't know what else to do. I'm going to wait of another call from my principal from school because their is a lot of work to be done. I'm having problems with my disability from school. I returned all my paper work and the people from the main office messed up big time. Shirley can I have your e-mail so I can try to e-mail a picture or email me at rennies1@earthlink.net or the BEB photo- album I'm not sure I can do it but I will try.I'm going to stay home another week to see if my eyes will open up. and than try to go back to school. thank you
Irene
Re: Just someone to listen
Hi Irene, I know how frustrated you must be. I hope that you are able to get your disability paperwork from school straightened out soon.
It takes a while to get the BOTOX sites and dosages right and when you are talking getting them every 3 months or so, it seems like an awfully long time. Time moves very slowly when dealing with this.I would love to have you send a picture for the photo album. Just click on my name above, in blue, and a window will pop up with my email address. You can also find my email address and information on the photo album in the link provided at the top of this bulletin board page. Just click on "Photo albums" which is listed right next to "BEBRF Main Page" at the top and right of the first bb page. If you have trouble finding it, let me know. Shirley in Arkansas
Re: Just someone to listen
Diane, When one of our "friends" hurt, we all hurt. So glad you posted and just shared what's going on. You have received many helpful suggestions and I would like to add one more. It might not apply in your case but you never know until you ask. When I retired approx. 3 years ago, It was in Sept. 1999. If I was in my right mind at that time I would have taken FMLA until the first of the year and then applied for Disability. If you have a family medical situation and you certainly do, the doctors have to fill out some forms, which I am sure yours will. It is a law that they can't fire you if you are out on this type leave. Just a thought I had and thought it might help in your case. Joyce in NC who really cares how you feel.
Re: Just someone to listen
Oh Dianne, how I empathise with you. And so obviously does everybody else here. Thank goodness we have each other.
I have been interested to read that you have been crying and so have one or two others here. I too have just had my second lot of Botox one week ago and i have surprised myself by bursting out crying in my shower. Since then anyone just needs to say akind word to me and i am in floods of tears. i am on no other medication so it can't be that that is causing it for me. Perhaps like Debbie it is just starting to sink in....
I also agree with Mary G that we have to listen to what our body is telling us. i have learned that the hard way. The first time a setback occurred i got over it quite quickly but yesterday I was reminded very forcibly that my life can never be the same again. I was tired (too many pleasant outings with friends who came to pick me up...three of them in two days) and although i knew i was tired I still went with another friend who picks me up on her way home from work to go shopping. i was valiently trying to keep my spirits up while going round the aisles with three quarter closed eyes by telling myself how brve i was and this was character showing itself and perserverance etc etc..you know, all the things we tell ourselve to keep ourselves going onwards......when wham down came the lids completely. I knocked into all sorts of things, I don't know what on my way back in the direction of the help desk and had to ask them to ask over the tannoy for my friend to come and get me. i was so embarrassed and i could feel a solitry tear trickling down my cheek. i didn't dare to speak because i felt the dam would break right there in the shop in fron of hundreds of people. i couldn't open my eyes for about 2 hours again, and then only very little all night. is this normal?
So anyway we have to adjust our bodies to how they are now and not expect to do what we did before because we will suffer for it. It is hard to do when it is not in your nature. So I think you should be a little kinder to yourself, Dianne ..and give yourself break. i don't think you really have much choice and will only make your blood pressure and eyes worse by trying to be superwoman. "Give yourself permission" was what an old woman told me today as she patted my hand while i sobbed my heart out..
Pippa, feeling sorry for Dianne, Debbie and everybody else, including myself today.
Re: Just someone to listen
Pippa, I have a soft, friendly shoulder; cry on it anytime you want. I understand your frustration. We think we can do something and it goes okay for awhile, then our eyes play their tricks and we end up in unpleasant situations. I've been there lots of times and can empathize with everyone's tears.Hoping tomorrow will be better for all. Sally in North Idaho who is going to go to bed early Having only one eye that works is nerve wracking and throws me off kilter.
Re: Just someone to listen
Thanks Sally. Can you feel the big ((HUG)) I am sending you?
Pippa..and sending positive healing thoughts towards your bad eye. Which side is it on?
Re: Our Most Important Body Part
This was sent to me by Mindy and I read it at my first support group meeting:Our Most Important Body Part My mother used to ask me what is the most important part of the body. Through the years I would take a guess at what I thought the correct answer was. When I was younger, I thought sound was very important to us as humans so I said "My ears, Mommy." She said "No. Many people are deaf. But you keep thinking about it and I will ask you again soon." Several years passed before she asked me again. Since making my first attempt, I had contemplated the correct answer. So this time I told her "Mommy, sight is very important to everyone so it must be our eyes." She looked at me and told me "You are learning fast, but the answer is not correct because there are many people who are blind." Stumped again, I continued my quest for knowledge over the years. Mother asked me a couple more times and always her answer was "No, but you are getting smarter every year, my child." Then last year, my grandpa died. Everyone was hurt. Everyone was crying. My Mom looked at me when it was our turn to say our final good-bye to Grandpa. She asked me "Do you know the most important body part yet, my dear?" I was shocked when she asked me this now. I always thought this was a game between her and me. She saw confusion on my face and told me, "This question is very important. It shows that you have really lived in your life. For every body part you gave me in the past, I have told you was wrong and I have given you an example why. But today is the day you need to learn this important lesson." She looked down at me as only a mother can. I saw her eyes swell up with tears. She said "My dear, the most important body part is your shoulder." I asked "Is it because it holds up my head?" She replied "No, it is because it can hold the head of a friend or a loved one when they cry. Everyone needs a shoulder to cry on sometime in life, my dear. I only hope that you have enough love and friends that you will always have a shoulder to cry on when you need it." Then and there I knew the most important body part is not a selfish one, it is sympathetic to the pain of others. People will forget what you said...People will forget what you did...But people will NEVER FORGET HOW YOU MADE THEM FEEL... Well, my friends, my other parts might be falling apart, but God gave me TWO good shoulders. Kelly in Dallas
Re: Our Most Important Body Part/Mindy and Kelly
Really nice thoughts. So many people are apathetic and uncaring. perhaps even out of fear in today's world.Still these are good thoughts because someone can maybe always see things from a different angle and try to help.
Re: Our Most Important Body Part
Kelly, thank you for sharing that with us. It was priceless. I am going to take it to church Sunday and have my Sunday School teacher read it. If my eyes stay open I will do it but I would probably cry. Joyce in NC who has a soft and tender heart.
Re: Our Most Important Body Part
I cried when I read it at my meeting. I read it several times before trying to "desenitize" myself but it didn't work. I still cried.
Re: Our Most Important Body Part
Kelly,That is a beautiful story and a good lesson. Denise
|