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    Decisons Decisions Decisions!!!!
    sparkyar posted:
    I went back to my specialist for my two month regular visit for meds today, I did not get the news I planned for (yeah when do we ever right?) I have had FM for 13-14 years now, tested positive for lupus (had two or three come back that I have a mild form (if there is any) disease just not the severe case of it at this time. In the last year and a half I went from a high stress job to being fired, then 9 months on unemployment to working from 28 to 40 hours a week (sometimes more but not very often) I work three to four days a week and get all my hours in those days..I have a stressful job at times (CNA in an assisted living) I clean/laundry and help with meds mostly.. But working with people with all kinds of aliments is difficult (some are even my age) so the stress can get high. I work 4 days and then sleep or lay around the 3 I am off to get my energy stores up just to do it all again the next week.. My house is a disaster, not to mention my yard...
    Anyway I was told to cut back or file for disability.. Just in the last 6 months I have had a major change in pain level (and yes he upped my script again it already cost my insurance company almost 500 per month for that med alone..My cost is 100 copay for ONE of the meds I take!!) and the insomnia and fatigue has really gotten bad at times too, I can handle one or the other but with both that is rough sometimes.. I have meds to take for energy and live off of energy drinks and diet pills to give me energy to work.. I will be 45 years old in September I have a REALLY BIG problem with being on disability at my age. Heck I have not gotten any grand children yet (hoping for Feb though if all turns out okay yay me!!) Just SO bummed and feeling like a burden to my family.. I SO appreciate this board to I can talk to people who understand my situation I don't always get this at home..
    Anon_2912 responded:
    Everyone is different in how they handle work & FM.

    For me, working keeps me sane and pills just made things worse for my mental state. (Those for FM).

    Yes I have good & bad days. Night time my hands and my leg muscles ache like nothing I have ever felt before, but I do my best to keep the pain at bay. I do take Advil, (more than I should) and FOR ME moving keeps me from getting stiff or sore.

    I tried the staying home (I am blessed I do not have to work), but mentally couldn't do it. I figure if I am going to hurt in someway I may as well get paid for it....

    Like I said, everyone handles things different with FM and I have good and bad days, but when I think about it, everyone does for one reason or another.
    BetteK responded:
    Work is our salvation and our cross. There are days when my job teaching handicapped adults buoyed me up. When the days that were more like lead sinkers severely outnumbered the good days, I had to go on disability as my pain doctor had suggested.

    By all means, work when you can. But be aware that this horrible disease can make working impossible. (Could you work with level 7 pain, double vision, severe fibrofog, and irritable bowel and bladder all at the same time? I couldn't.)

    Towards better days,

    Bette K
    ajnsmom responded:
    Hi, I'm only 48 and just filed for SSDI last month. It got to the point where I just couldn't work anymore. So I understand somewhat your situation. Only you know what you can handle, so try not to feel so bad if you need to stop working.

    Linda S.
    booch007 responded:
    Good Morning,

    You know how we talk about the bumps in the road in life. The right doctor, the right diagnosis the trial and error of meds....

    Well when all is said and done, it is the WHEN to say
    " enough ".

    For each of us it is different. We all do different jobs and use different muscles and who can rest during the day, we are different. It is the ACE who can figure out this challenge and make it work.

    I had 2 or 3 times I thought "no more"....then I really looked at what I was doing and spoke out and fixed the triggers that made it so bad. I have been blessed to be fluid in my day and change what I do and reinvent myself to keep working. It is my BIGGEST DISTRACTION. I can almost go all morning not thinking of my pain. By afternoon it returns and I medicate.

    That gets me home and a nap is in order. Some here have said we live at home to prepare to work the week, and that becomes our life. Maybe true...

    You know when it is your time. Please take this as a disease in your head. If you had a diganosis of cardiomyopathy and were placed on a heart transplant wouldn't think twice of resting and being on SSDI. If you had renal failure and dialysis every other wouldn't feel bad to be on SSDI.

    PAIN is a great motivator and there have been tough days that I pushed through with litle sleep from muscle issues during the night and had a full day ahead...It is a hardship and challenge to carry. BUT it is a motivator to say "enough".

    Do what will give you more quality of life. I hope it works out for you. We only go around in our life once and having it full of discord and unrest and pain doesn't sound like a choice anyone would make. Be sure you are doing all the right things for your body to help you. Alot of my issue at that time were dehydration and I needed to use antioxidants to cleanse my tissues. I am so much better today than the past. I just need to keep my head on straight.

    OK, do what is right in your heart. Fight if you feel you really aren't ready. Get yourself in allignment better and geez....good luck!

    Nancy B
    missist replied to booch007's response:
    I'm 54 and have been home for about 3 years.
    I still consider going to work part time--and I check for jobs but never have found one that would work-- that uses a skill set I have, and is not physically draining. I don't have that energy.

    I do work on things in the peace and quiet of home-- such as some babysitting for my kids, artwork, buying & reselling sometimes. I'm thinking of taking a table at a local flea market a couple times a month-

    Right now I'm dealing with several days of walking around in sunglasses in my house! not sleeping well, sore all over and headache. I don't know how I could do that and work full time too.

    I always hope the next dr. appointment or book or supplement or exercise thing will somehow make me better--but it just doesn't happen. The best I get is really about pacing and regular habits--and even that can get thrown off with too much noise or stress.

    not working is not the end of the world--yes I do feel I am not doing my share sometimes--but then I try too hard to make up for it--by cooking for family and doing all the cleaning and etc- I end up just so tired I wish folks would go. so--that too has to be balanced better.

    I don't think life was meant to be lived doing your best and still feeling lacking. at some point we need to accept what God has allowed in our lives and just go ahead and live with grace and dignity--knowing we have limits but are still valuable people.
    moxie1956 replied to missist's response:
    OMG! I had painstakingly typed over 2600 words & then, POOF, all gone! I could weep.
    Featherlight Hugs,
    dollbug replied to moxie1956's response:
    Moxie....I just wanted to comment that we are allowed up to 4000 characters (not words) on each post. Sometimes though IF the submit button turns gray (or some color besides orange) then you can probably know that the post will not take. I do not know what all causes this but I have noticed that sometimes this happens with me.

    I am sorry that your post was not accepted. I hope that you will try to post again. (maybe do it in parts).

    Things do happen here though when no one knows why. I think we have all lost things in cyber space at least once. (I know I have many times)

    Take care.


    sparkyar responded:
    Thanks everyone, I am so thankful for people who understand my situation.. I used to stay home when my children were little.. It was tough on me then, I started talking to the dogs and expecting them to talk
    I am going to try to just work 3 days a week, my money is our play money and food money.. I just know I cannot handle a full 40 hour week anymore.. I have had a great improvement over my pain in the last few days with the new medication change. I am horribly tired though.. I am praying for an answer for this situation, I know God will carry me though.. Between the fibro fog, and the memory issues of thyroid I think I am going insane sometimes.. My mother and grandmother suffered from Alzheimer which frankly scares the hell out of me when I loose my memory..
    I am very thankful for this site where I can vent and ask questions about things.. I really feel like I am on an island alone sometimes.. Well I have to work later so I need to "prepare" my self physically and mentally bring on the caffeine!!! lol
    annette030 responded:
    Everyone is different. WHO told you to file for SSDI? And why are you on such expensive meds?

    My four RX meds are all generic, and very cheap, I think I got the notice for June from Medicare, and the total cost of all my meds came to a bit over $600 for 2013 so far. So, an entire year comes to about $1200. I will miss the donut hole again. That thing scares me. I am on a long acting opioid, a short acting one for BT pain, zolpidem for sleep, and gabapentin once a day. I opted to go on methadone as my long acting opioid from a generic of MS Contin because it is very cheap, less than $30 a month. It is fine. The long acting morphine was over $100 per month for total cost.

    I was about 48 when I got on SSDI, I still had my husband's health insurance through his job back then. Now he is retired and we both get the old fashioned Medicare A, B, and Part D. He had cataract surgery, and I had breast reduction surgery, it covered both, we paid the deductible and our share of course.

    My grandsons are 18 and 6. I did not get to meet the older boy until he was 12, that is when my son married his mom, The younger boy came along shortly later. I do not feel like a burden to them, I have never had to take anything from them. I may need their help in the future, but not yet. I am 62, almost 63 now.

    It is far better to stay home that it is to take energy drinks, and diet pills to stay at work. If you can work without them, fine.

    The fatigue and insomnia is the hardest part of FMS for me. I can deal with pain, but the all of a sudden fatigue and waking up feeling unrefreshed is awful. I have awakened after sleeping eight hours once in 18 years feeling refreshed, I took the zolpidem that night also.

    Enjoy talking with others who have FMS here. I am usually found on the Pain Management Board, and only come here occasionally.

    Take care, Annette
    Anon_10033 replied to dollbug's response:
    Too funny! I did say 2600 words, but I meant only 2600 characters. That is why it was SO frustrating, because you know there is no way I could remember everything I had just conveyed, so thoughtfully and precisely. aarrrgh!

    Anyhow, it's water under the bridge now. But, thanks for your word up because if I had been in a dense fibro fog, I might have rambled right on into cyber space Who knows?! lol
    moxie1956 replied to dollbug's response:
    Thanks, MiMi! I meant to say 2600 characters!

    I hope this finds you enjoying the day.
    Featherlight Hugs,
    BetteK replied to moxie1956's response:
    Isn't it amazing how different we are and yet how much we all have the same basic problems?

    • Pain that may travel throughout the body here, there and everywhere.
    • Fatigue that just turns off all the energy your body had just a few minutes ago.
    • Fibrofog that makes it difficult to know what you're doing, what you've done, and what you should be doing.
    • Disregulation of the body. Your bladder, your bowels, your sleep, your internal thermostat are all out of whack.
    At least we have each other. Bless us every one.

    moxie1956 replied to BetteK's response:
    OMG! I've got to laugh at myself. For some reason, one I cannot presently recall, I decided to post anonymously. So, I follow up in an anonymous post to MiMi, then forget that I did, and I again reply to Mimi, same content but with my identifying moniker. This is an excellent example of fibrofog, if ever I saw one. And, it goes on and on and on and on and...

    Signing off before I forget to;)
    Featherlight Hugs,
    missist replied to moxie1956's response:
    Laughing Moxie/anon-- because I 'get that'.

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