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  #211 (permalink)  
Old 08-10-2002, 07:40 AM
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Bgwelz, Well welcome aboard the Fibro board! There are alot of great people here and many ideas on how to make it thru the day, and great advice.

I have had Fms for about 7 yrs, atleast diagnosed from the Dr. One thing I found out is that if you have insurance that you pay for, for example an extra life insurance policy...hang in to it. It is impossible to get covered for any new insurance. The pre existing policy comes in. I tried to by Long Term Care Insurance while I was still working and when they found out all of your health problems, meds you have to take...they back away. Afterall, the insurance companies do NOT want to pay OUT on anything.

I almost dread going to the Doctor because everytime there seems to be a new problem...so is this what growing older is all about???? lol

I hope you are having a good day today and painfree!

janet
  #212 (permalink)  
Old 08-10-2002, 07:59 AM
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Welcome bgwelz

I'm glad you found a place where you know you have "friends" who will understand just what you are talking about, and no one will think you are complaining, faking, or crazy.

I don't know what I would do without this group of wonderful supportive ladies on this board. They make the difference betwen a bad day and total misery.

We are here to listen, and occasionally lend some advise and moral support. Hang in there with your lawyer search for SSDI. Just keep trying to get an answer as to WHY???

Be well, and have a pain-free day.

Val
  #213 (permalink)  
Old 08-10-2002, 11:09 AM
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Welcome to the board bgwelz, you'll get lots of understanding here.

I took my son to the beach yesterday and boy am I paying for it today! My shoulders/arms are hurting and been tingly most of the morning! I use to over use my leg muscles when we would go to the beach (the actual beach was OK, what was hard was getting through the soft sand to get to the shoreline!), but now we have found a place that you go from the parking lot and walk on a board walk for most of the way and it takes you right out to the actual shoreline...it is great, there was actually a person there in a wheel chair, it was encouraging to see that. It made me feel like no matter what happens we can still manage to have an enjoyable life.

As most of you know, I have filed for Disability and was turned down, I appealed it and was turned down, appealed it again, had a hearing with a judge and she turned me down, I have not contacted my lawyer since I got that letter so I don't know how to proceed, but I am planning to write a letter to a few congressman and see if that would help my case, I will let you all know the results.

Love to all,
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  #214 (permalink)  
Old 08-10-2002, 06:04 PM
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Hello everyone! I'm Katy and new to this Forum, and like you, I have Fibro. I live in West Texas, am 54 years old (August 15), live alone with my two dogs, who are my children. I love crafts and hobbies, but seldom feel up to doing them.

I was diagnosed with it in 1994, but have had it since the mid 80s. I have tried about every medication there is, I think, and most of the them do more damage than good for me. I finally went to a Pain Management Doctor and he gave me a Tens Unit, which helps tremendously (at times), Flexeril, Neurontin (600 mg), and a couple of other meds, which I could not take. The Neurontin has helped the most, at least with my sleep. I just got to the point where I couldn't sleep more than 1 or 2 hours max and was totally exhausted all the time. With Neurontin, at least I sleep and the good deep sleep, finally. However, it does make me groggy even in the mornings, but I fight thru that. I'm tired all the time anyway, at least I can get some sleep now.

Fatigue is my biggest issue with this disease. It's so hard to get anything accomplished anymore. And, like a lot of you, I used to be able to do 10 things at once and got it all done. I was an admin assistant and proposal coordinator and it was very stressful also. Now, I do good to 1 thing accomplished in a day. And, my house...forget it! I used to keep a very clean house and now, I'm ashamed for anyone to even see it. It's awful!

I've heard water aerobics is the way to go with the exercising, but there isn't a pool anywhere near where I live. I used to love to walk, but can't do that much anymore. I just recently had to get a cane to help me on "those" days. That really makes me feel old, and I hate it!!! I am extremely sensitive to "cold" and can tell when the weather is changing also. And, I'm going thru menopause. I have IBS, hypothyroid (I've had a partial thyroid removal), migraines, high blood pressure, diabetes (although I have that under control without meds right now), manic depression/bipolar. And, I'm not as patient as I used to be with anyone it seems. I have 2 elderly parents that I take care of and they drive me crazy. They don't understand about this illness either. I cry a lot (way too much) and then get a grip and get on with my life. I don't laugh much anymore at anything and cannot find any happiness in my life, except for my dogs. They do make me laugh sometimes. There isn't anything to look forward to or to plan for anymore. I'm dirt poor because I can't work anymore and disability doesn't pay much at all and because I live alone, I support myself. It's just really hard to survive anymore.

I've been on disability for almost 3 years and it took almost 2 years before I got that. And, now they (SS) are saying that I worked during the time that I was disabled. They initially asked me when I became disabled and I told them what happened to me and gave them a date, which they had to have. I was working during that time, but I also told them that. I was working extra hours and was under a tremendouse amount of stress and then I had a nervous breakdown and had to go into a partial hospitalization at a mental hospital. So, I gave them that date. I did go back to work, but was never the same and eventually lost my job because of it. Anyway, old news. Just rattling on.

Glad to be a part of this forum and so glad that I am not alone. It does help and it helps to be able to talk about it too. Thanks for listening to me. Katy
  #215 (permalink)  
Old 08-10-2002, 06:11 PM
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Water Arobics

Water exercise can be good as long as it is done in moderation & in a warm water pool (over 90). Most YMCA'S have a Twinges in the Hinges group that exercises in a amall warm water pool & does it at a gentle pace.

I read some of the posts & see alot of us are in the same trouble with disability, should be something we could do to get these boards to listen more to us & our Dr's. Any ideas?

Sometimes I wish I was on Social Security instead of the School Employee Retirement System, we only get ONE appeal! SS seems to get more that that.
OH well stop whinning right!
I am a GROANUP: I hurt so bad that other people run when they see me coming! Funny, maybe!
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  #216 (permalink)  
Old 08-10-2002, 06:34 PM
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Welcome to the board Katy, hang in there.
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wife to Bobby (17 yrs.) and
homeschooling Bobby, Jr. (12) for over 9 years
  #217 (permalink)  
Old 08-10-2002, 06:51 PM
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Hi Pamtanise and Bgwelz, thanks for your reply.

Just a quick note about SSI benefits and disability. I was turned down 2 or 3 times and it took almost 2 years to get it. But, I did have an attorney helping me the last time. Actually, this guy was a paralegal, but had expertise in the Social Security/Disability field and had come recommended by a Fibromyalgia Group in a nearby town. Just about everyone I've heard of has had to get an attorney to help them get the benefits. Don't think SS will even listen to you without one. But, be sure to get one that is qualified. Don't know how you would find one, but if there is a Fibro group in your community or nearby community, contact them and ask about it. They can probably refer you to someone. Also, they do get a hefty amount for it too. Mine cost $4,000, but I got max on my SS, so it was worth it. And, now with my problems with SS again, he's working on it again and this time the cost is already covered from what I paid before.

I am also running into problems trying to get help from other programs in my community, like Medicaid, housing, nursing, utility bills, etc. Unfortunately, I make too much money to get much help, but there are programs available. That's a laugh...make too much money. Can't afford to live on it, but I make too much for them to help me. HA! HA! I'd like to see them live on it. If anyone knows of any programs that can help, please let me know. Or, websites that might be beneficial as far as benefits go. Thanks.
  #218 (permalink)  
Old 08-10-2002, 08:21 PM
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Hello Katylynn,

Welcome to the Fibro Board, sorry you are having bad time with your illnesses and the stress of other problems. Things just have to get better for you.
So sorry that you are having a hard time with everything. I am so sorry that you are in the survivor mode too! It is the pits to fall between the cracks, too much money for this program, but not enough to live better.

I have used a tens unit too, whenI was first diagnosed and was in incrediable pain and allergic to most medicines I was intoduced to the tens unit...it was wonderful for me, I wore it all the while I worked. After awhile my muscles got used to it and it no longer provided relief for me. I do use rub on products like Flex45, icyhot, BenGay, etc...it helps to relax the muscles.

Do you see your Doctor regularly? I visit mine every 3-4 months, even when I am well...like he says I like to see you when you are well so I know what you look like when you are sick....I too have multiple problems and that makes things more difficult.

Hang in there, may tomorrow be a better day for you!


janet:
  #219 (permalink)  
Old 08-10-2002, 08:57 PM
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Welcome Katylyn

This "sisterhood" of ours is growing here.

Have you tried contacting your Legal Aid Society for advice? Every community has one...the number should be listed in the yellow pages. They might be able to give you the advice you need on how to sheild your finances so that you can qualify for assistance.

Sometimes it's not what you have, but how you present it that matters with the government agencies. You did say you cared for aged parents. Can you start claiming them as your dependents? would that help or hinder your position etc....

I know how it is to be among the "working poor". There was a time when both my husband and I were out of work, but could not qualify for any assistance because we owned two cars outright. If we were making payments on them we could have qualified for assistance, but because the loans had been paid off we didn't (!?!?!?). To top it off, just selling the cars would not have helped. We would have had to sell them and THEN wait 4 months to re-apply after "divesting our assets" AAHHGGHH!!!

No wonder there are homeless families in this country.

We got WIC to feed our kids, stood in lines at Salvation Army Food Pantries ( G-d Bless them, we're Jewish, and still felt comfortable and welcomed by their wonderful generosity) and almost lost our home. It was terrifying for a while, and I'll never get over the bitterness of it all.

Hang in there...it will get better. Legal Aid is a great resource for women. We are cosidered a minority

  #220 (permalink)  
Old 08-11-2002, 07:24 AM
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Good Morning All



It is a good day for me so far. I slept so good last night and woke up at 6:00 this morning wide awake and actually felt pretty good, except for a few aches and pains here and there. I did some stretching and a couple of exercises. Thanks for the replies Janet and Lifestar.

I checked the phone book for the Legal Aid Society and it is not listed here. Guess we don't have one. But, will check around surrounding areas soon to see if they have one. I know what you mean about the bitterness. I too feel it. I have worked all my life and made some pretty good money, and now I feel like trailer trash and almost have to beg for help. I really hate it and hate feeling like this. I had a pretty good 401K, but had to use it up waiting on Disability to kick in. So, now I have almost nothing. Most of my money goes for bills and then my doctor bills and meds. I can get some meds thru MHMR and the Primary Care place here for almost nothing. But, there are still some meds that I have to pay for and some are fairly expensive. At least the major ones, I get for $6.00 - $10.00. That sure does help. I do have Medicare, but I still have to pay the 20%. And, after so many doctors, that adds up. There is a web site that has some info that I'm going to check on. It is www.benefitscheckup.org. And, I believe it is associated with SS. I get a little help from the county with housing too. It's not much, but anything is better than nothing. And, I go to the Food Bank when I can. I live in a small, poor community with mostly a Mexican population. There isn't much here and what little funds they have are already taken. However, it seems that most people that get the help are driving new cars and live in better places than I do. I sure don't know how they do it.

I see a doctor at least once a month for something or other. I just started seeing the Pain Management doc last month or so and I think he can help more than anyone. The only thing he gave me that I can't take are NSAIDS. I'm allergic it seems. I started swelling in my legs and neck, so had to get off those. My other doc gave me Naproxyn, the prescription meds for Naproxyn or Aleve, and that helps too. My dad gets some Greaseless Analgesic Balm from the VA and he's given me some of that. It helps too. It's like BenGay too. I have also used Tiger Balm, but I use so much that it's pretty expensive, but it works good. Another thing I did that helps tremendously and I highly recommend it to all that have Fibro. I saw an ad for the Temper-Pedic Mattress on TV and checked it out. It looked wonderful and I thought about ordering it, but it is really expensive -- something like $300, I think. Anyway, I was looking thru a sale catalog for JC Penneys and found something similar for $50.00. It's called a Memory Foam Trizone Mattress Pad and is in their regular catalog for $59 for a full size, and $69 and $79 for Queen and King. It isn't exactly the same as Temper-Pedic, but it's close. I ordered it last year and it has been the best thing I've ever gotten. It makes my bed seem almost like a cloud. I do, however, still have those nights when everything seems hard to sleep on...pillows too. Does anyone else have that?

Like many of you, I'm willing to try anything these days and also will go to any agency to get help. If you have any ideas or website that I might try, please let me know. I'm so tired of being poor and pain. We don't have a YMCA or YWCA either here. I wish we did so I could go to water aerobics. I really think that would help. Well, I do keep rattling on. Sorry this is so long. Thanks for all your help. Katy

This isn't related to Fibro, but does anyone know how I can put my location on my message? I can't figure it out. Thanks.
 
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