Frustrated (need to vent...)

Discussion in 'Fibromyalgia Main Forum' started by SkeptikSharon, Sep 24, 2008.

  1. SkeptikSharon

    SkeptikSharon New Member

    I just don't know what to do anymore. I hurt all the time, tired all the time, my brain doesn't function properly. I'm weaning off the pain med to see if that is messing up my stomach, but it never worked to begin with.

    I haven't been able to really stay in a full time job since 2005. I've been trying to go to school online off and on during this time (started in 2004), but keep having to pull out because my brain doesn't function and I can't think to write my papers.

    Now my school loans are coming due, with the first payments due in December. Our car insurance payments also restart in December. My husband is the only one working. I get state disability, but it is a very little amount and it will be done in November. I'm applying for SSDI, but that's not money I can count on, as I fully expect to be denied at least once or twice.

    I just don't know what to do. My husband's stress level is already high and I don't want to add anymore to that. I really really really just want to give up our apartment here and move back to Texas, where we can live at my parents' house for free, at least temporarily. I don't want to be in a position where we end up filing for bankruptcy or screwing up our credit.

    I'm 29 years old. My life was not supposed to be like this. I was supposed to have been finishing my degree this year, graduating, and then finding a better, higher-paying job. I'm supposed to be working and enjoying my life, not struggling to take care of myself and keep my husband's stress level from going over the top. I just want to crawl in a hole and sleep forever. Or just let someone else take care of everything. I don't know.
  2. Susan07

    Susan07 New Member

    Don't be so certain about being denied by SSDI. FM is on their list. If you provide proper paperwork and have a primary care physician and a neurologist (or rheumatologist) who back you up you may not be denied.

    It does sound like it might be a good idea to live with your parents short term until you can find affordable living within your husbands income.

    Remember you two promised in sickness and in health.

    This is one physical malady that you're not sure where it is going to take you or how long the journey will be.

    Take care
  3. SkeptikSharon

    SkeptikSharon New Member

    The big problem with the change of residence is that it would mean a move from California to Texas, as well as a change of job for my husband (meaning also a change in my insurance). That is such a huge change, which we are eventually planning to do, as my parents have a side piece of land they will give us to build on or put a mobile home on. But we weren't planning to do it until next year sometime, and its going to take a lot of work and planning just to actually do it.

    My husband is not really the type to just pick up and move, as he is not as confident as I have always been in the easiness of finding a job right away, and even though we would no longer have rent while we live with my parents, we do still have credit card payments and loan payments to make (aside from the student loan payments).

    At this point, I'm just tired of struggling through the weekdays by myself while my husband is at work. If we were at my parents' then at least my mom would be there during the day and she could take me to doctor's appts, without me feeling guilty about asking for rides and stuff. Its just all so much to think about, and my husband wanted to take advantage of his work paying for him to get another certification, making him more marketable for when we move, but he won't have time for that until after the first of the year.

    I'm just getting tired of the everyday struggle and the money worries. And I don't want to place those money worries on my husband more than necessary, because he already is stressed enough at work and with being the only one working. We get along really well and talk all the time, but I know he doesn't deal with stress very well.

    I do hope that the SSDI thing doesn't go so bad, but I am concerned about the fact that all tests show basically NORMAL. There doesn't seem to be anything tangible for the SSDI people to base their decision on other than what I complain of and whatever my docs write down. I have difficulty even making it to my doctor's office half the time, because I can't really even drive anymore.

    How do they make a decision when there is nothing tangible? The only things that have ever shown up is minor stenosis in a couple areas of the spine, mild inflammation of my stomach and esophagus on the endoscopy, mild inflammation of the sphenoid sinus from my brain MRI, a slightly high cortisol level, an insufficient vitamin d level, and a slightly low but within normal range iron level. So basically NOTHING. How do they make a decision based on that?

    I just want my mommy... I feel like such a baby...
  4. Catseye

    Catseye Member

    I can't remember if I told you about this site or not, check out They pretty much have the treatment plan laid out, you just need to find an expert to help. Maybe some of it you can do yourself if you research it to death. Maybe you can at least get some help with the pain. I haven't had pain so I haven't researched how to get rid of it.
  5. misskoji

    misskoji Member

    I'm very sorry that you are struggling so. I too understand your frustration at being robbed of young years.

    I wanted to suggest that regarding your student loans, you file to have them released. Since you have FMS, you can certainly ask your doctor to fill out the paper work they will send you for this. It basicly just states that you have a disability and that you are not expected to resume income capabilities. Your loans will be forgiven this way.

    Maybe you can get this done, and it will be one less thing for you to worry about.

    Good luck, and try not to be so hard on yourself.
  6. ABLUV

    ABLUV New Member

    I was 25 when I got sick and in my 3rd year of marriage. The illness got severe by age 29. My legs stopped working
    properly; I literally couldn't walk - just out of the blue
    my legs would stop and start for no reason (they still do that). It was frightening. I was planning to expand a house cleaning business and starting a family then this happened. I had to quit working, no one could depend on me
    to show up because I never knew when I would be able to walk. I had horrible pain allover my body, including eyes & ears.

    My husband & I moved out of an apartment to the country. We got a 1/2 acre of land and put a single wide mobile home on it. We pinched pennies for a year and a half before disability payments started; I was denied twice. We ate a lot of very creative meatless meals, when I could cook and we ate a lot of cereal when I couldn't cook. We only ate what was on sale. We called all the bill collectors to tell them our situation. Some of them lowered our monthly payment. The bank that loaned us money for a van, let us skip one monthly payment a year if we filled out a form. We alternated the utility bills - January pay the lights, February pay the water,etc. During
    all this my husband was in college and working full time.

    While waiting for disability to come thru I joined a local
    support group for fibro/cfids and learned all I could about the illness. That helped me a lot. Even when I couldn't make it to the meetings, knowing the support was there, made a big difference in my life. The friends in that group helped me understand that I had to find a medicine that controlled the pain and sleep problems so that my life could be a little more manageable. They were right. When I accepted that I had to take medicine to manage the symptoms, my life became more manageable. The trick was to find the medicine that would take my pain and fatigue from 10 to 4 or 3. I can live with 3 brain fog and pain much better than level 10 brain fog and pain.

    That's the short version of my story. It probably sound a little like yours. I hope you take comfort in the fact that my husband and I made it thru those tough years. We just celebrated our 20th anniversary this month. Inspite of Chronic Fatigue and Fibromyalgia we are very happy and consider ourselves very blessed. We are not just survivors
    we thrive in spite of it all and this comes by the grace of almighty God. We have made it this far; it is my firm belief that you can too. Keep telling eachother that you're going to make it thru this; stay in the habit of saying words of love and comfort and encouragement. Those
    words will carry the two of you through the most difficult

    May peace fill your mind,

  7. ABLUV

    ABLUV New Member

    maybe you can switch to an anti-depressant instead a pain
    medication. Pain meds tend to mess up your stomach. Anti-depressants are commonly used to manage fibro/cfs pain and insomnia. I had a hard time accepting that at first but the pain and fatigue were so debilitating that I had no choice but to try because motrin, ibuprofen and the like had given me reflux disease.

    I take elavil; there are others to try. This is an older med and there is a generic brand that works as well and it's cheaper to get the generic. So if the doc tries to force the newer ones on you tell doc that you need to try a
    med that has a generic first for financial reasons.
  8. ellikers

    ellikers New Member

    I'm so sorry you are frustrated. You are dealing with a lot! You do not deserve this mess at the age of 29. It's just the crappy deal that life dealt.

    Do you write in a journal? I find that to help A LOT. It gives you a place to yell and scream (in written word) to get your thoughts, worries, etc out of your head. Can help you process tough stuff.

    I don't have much in the way of advice to give, I just want you to know that I support you and I think you are amazing and strong and a survivor to be going through so much with so much courage. It takes a lot of courage to live with your pain and your illness.

    Just know you rock! And I wish there was something I could do. And vent away because you need to get it off your chest; bottling it will only make you feel worse.

  9. SkeptikSharon

    SkeptikSharon New Member

    Barrowinnovations – I checked out that site, but am a bit overwhelmed by it. How do I convince a doctor to figure out which one of those it may be? Like if I go in and ask for a bone biopsy or whatever it would be to check for fungal or bacterial INSIDE the bones, they are going to look at me like I’m crazy. And I am very hesitant to just ask for meds to see if they will work. I don’t like meds, and hate the idea of taking them without being sure that I actually need them.

    Misskoji – Regarding the student loans, do you know how to go about filing to get them released? Would that be considered forbearance or something else? I really need that, because I cannot think clearly enough or concentrate well enough to be able to handle the 5 week classes. There’s always a group portion, and while I can get extra time for individual assignments, it is not possible with group assignments. I really want to finish school eventually, but I can barely think straight to handle my bills and stuff right now. And the stress from those assignments puts me over the edge. I try not to be so hard on myself, but that’s always been one of my biggest struggles. I’ve always put way higher expectations and standards on myself than anyone else put on me.

    Caledonia – What kind of doctor do I ask to do the Functional Capacity Evaluation and the NeuroPsych exam? I’ve already had a sleep study done, and it definitely shows Alpha-EEG sleep disorder, but I’m not currently even medicated for that. I need to go back to the neurologist again, but with little money, I kind of have to focus on the docs that can treat what is most pressing, which tends to be the pain. Its like a juggling act and is very frustrating. The work I was doing was already sedentary – 8 hrs 5 days a week at a computer, but I cannot really handle even the computer work for very long and cannot focus on the tasks for long. Sitting for 8 hours a day at a desk makes my back hurt so much more, and most places will not have a bed or couch that I can go lay down on for 15-20 minutes every hour or so (and most would not allow that anyway).

    Abluv – Thanks for sharing your story. That’s awesome that you and your husband have been together for 20 years. My husband and I hit our 8 year anniversary in June, and I’m not really worried that this illness will split us up or anything like that. I’m more worried about his stress levels and possibilities of heart attacks and stuff. His mom had a heart attack 5 years ago or so, and I think his blood pressure tends to be a bit high. I hate placing extra stress on him, especially since his job is already pretty stressful. When things are bad at home, it makes it harder for him to handle the stress from work. I don’t want him to end up sick too.
    As for the antidepressants, no can (or no will) do. I’ve already been through a ton of different ones and they make me feel worse. Its like they mess up my brain chemicals worse than they already are, so I won’t try going back on them. I was on them from 1999 to 2007 and over that time, I tried so many and kept getting worse and worse. Elavil was also given to me to try to prevent my migraines, but that didn’t work either. I don’t know what else to do about meds. Pain meds make my stomach worse (at least I’m hoping that’s what’s messed up my stomach, but we’ll see after a few more weeks). The only thing that helps at all is Xanax and only for anxiety (and a bit for sleep). I was even taking Zofran for a while for the constant nausea, but that no longer works either. Argh!

    Ellikers – Thank you. I hate these crappy life deals. Yeah, I’ve been keeping journals since I was about 10 years old, but can’t really write all that much anymore. I tend to write and write and write, but now my wrist and hand start becoming EXTREMELY painful after only a short time, and then I have to ice it and hope that it will help. Thank you for your kind words and support. I appreciate it! =)
  10. lillieblake

    lillieblake New Member

    "I just want to crawl in a hole and sleep forever."

    Sharon, I think this feeling comes along with this DD.

    I have found the only way to cope is to keep on going like I am not in pain, but I do give myself one day a week to feel sorry for myself and do only what I want to do.

    My boyfriend doesn't like it, but I told him I could have a nervous breakdown again if he wanted, and he just puts up with me sleeping on the floor with the dog, taking a nap if I feel like it, drinking Pepsi and eating ice cream for breakfast, and not cleaning the house.

    The next day I go back to my "plodding" life style that gets me through to my next 'me' day.

    Good luck hon, this dd just is not fair.