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Wednesday, December 2, 2009

Small Successes and Epic Failures

It's been a while since I have written, but it's been a while since I have done anything. So it all evens out.

My pain levels have been an absolute rollercoaster. One minute I'm ok, the next I'm squirming and moaning in pain. It should be noted that I have stopped taking narcotic pain killers. I'll have a low-dose Vicodin when the pain gets to be too much, but that seems to only be happening once every two or three days and it's very rare that I would have to take more than one in a day.

I guess it's a good thing to reduce the narcotic intake from 4 times a day to a minute dose every two or three days. At least now I know which pain was actually opioid-induced hyperalgesia.

Another change in my medication in an increase in Zanaflex and Neurontin. I now take Zanaflex 4x a day like clockwork and my doctor has increased my Neurontin to 800mg 4x a day, for a total of 3200 mg a day, again, like clockwork. I still have to have alarms set on my phone to remind me when to take a dose.

This medication seems to be working well, as my good moments are getting longer. But, then, I try to do something stupid like the dishes or the laundry (or both) and I end up in bed squirming and moaning again - and not in a good way. I seem to have perfected the push-crash cycle. I push-push-push-push, then crash hard. Pacing is always something I have needed to work on.

Another update in my life is that I'm considering going back to school. I don't know that I'll be doing the online modality again, as I just don't have the discipline to keep up with the coursework when left to my own devices. But, will I have the discipline and the spoons to physically attend class a couple days out of the week? I'd like to try, honestly. Because no matter what else I have accomplished, no matter what else I went through in life and survived, not finishing my Master's degree makes me feel like a complete failure. And failure has always been my greatest fear.

Which brings me to another failure - everything else. It looks like I may lose my house that I've lived in for 9 years, and there is a good possibility that I may lose my car. I'm struggling to keep the utilities on and paying for my medication out of pocket because I don't have health insurance. I'm not sure what to do at this point except ask my BFF if she would consider rooming with me (and son, until he leaves for college). She wanted to start looking for a new place for herself to live this month. If we pool our resources, maybe we can get a moderately nice house together. Otherwise, I'm going to be forced to move in with my step-mother. After all, I own 1/6 of the house she's living in (and I'm sure my brothers won't mind me taking up their portions). But I really don't like my step-mother, so that's the last resort. I wonder if I can sell the house before it forecloses? That would be bonus. Anybody who knows anything about any of this kind of stuff, please give me some pointers.

So those are my small successes and epic failures that I've been dealing with since my last post. Maybe now that I've gotten it all off my chest, I can finally sleep again.

Gentle hugs and keep on rolling,


  1. sorry you are going thru all that.
    Not much better here either :(

  2. You are not a failure just because you haven't finished your master's degree. That fact that you have been working on it on and off proves that. Will the master's degree help you in the job department or is it just for yourself? I am glad that you are doing a bit better without the narcotics. I have a fear of taking them myself and can understand why you stopped taking them except the vicodin (that gives me a headache so I have to stick to darvacet). I hope you are able to find a good place to live, it's hard in this house too. I lost my music store a year ago last summer and it was difficult to lose, I loved it so much. I hope that you get to keep your car.

    About foreclosure, you do have some periods of time where you can get your house back before they sell it. Would bankruptcy help at all? Some states (I don't know which ones but Michigan) let you keep your house even with bankruptcy. Talk to a lawyer, that would be my suggestion.

    I hope you are feeling better!

  3. Ohhh sweetie, **gentle hugs**.

    You are not a failure, but I can sure understand feeling that way. You are dealing with so much, and it's so hard. I wish I had the words to say, but I don't. I just know that at the end of the day, everything's going to be okay. Hang in there. I hope the clouds clear and the sun shines brightly soon for you!

  4. Sorry that you're having such a tough time. I wanted to comment on a couple of things. First, I switched from Neurontin to Lyrica and Lyrica has been much better. While it's basically the same thing, Lyrica absorbs into the blood better than Neurontin. In my case, the Lyrica stopped the constant throbbing and pulsing. Might want to check on it. Not sure if it's more expensive. Wasn't for me, but my health insurance sucks. Second, I don't know your history at all, but are you sure about the opioid-induced hyperalgesia? Opioids get a bad rap. If you have pain so bad that you're in bed, it's ok to be taking opioids. And you're talking an awful low amount at 1 every 4 days. Just saying. You would know best, but just like you can't go crazy popping pills, you also don't have to be too afraid of the vicodin or percocet if it helps.

    On the house, you can certainly sell it if you own it. The trick is that you need to get more than the amount of principal and interest and late fees, etc. that you owe the bank. That's what a foreclosure is. The bank sells the house. But what typically happens is that no one shows up to buy it on foreclosure sale day. So the bank buys it itself for the exact amount it's owed. But if someone shows up and bids $1.00 more than the bank is owed, that's your $1.00 and the bank gives it to you. Usually states have rules on the bank having to advertise the sale so that people show up. There's nothing to stop you from doing your own advertising as well.

    Finally, if you don't already meditate, I found it the most helpful thing since being diagnosed. John Kabat Zinn has some books and tapes about how to do it. Not relaxation, but ridding the mind of everything, including feelings of relaxation or reverie or flights of fancy of any kind really helps me. The ability to experience the actual moment you're in free of interfering thoughts, allows you to overcome being reactive. Learning how not to react comes in handy with pain! Also, I was just so surprised about how many subconcious impulses where affecting my being and how I could overcome them.

  5. You are in a tough spot right now. I'm so sorry. Yes, meditation is a great tool, but when you're stressing isn't always the best time to start it. But think about it because it helped me a lot.

    I recently moved from Seattle to San Diego. I'm like you and we're apparently part of a small subset of fibro people that benefit from narcotics. Cannot find a blasted doctor down here that prescribes them down here. As far as the doctors here are concerned narcotics do not help fibromyalgia. Yeah, tell that to my body while I'm all curled up and swearing from the pain!

    So I'm looking at other options. Have you ever researched low-dose naltrexone? Interesting older drug (that means cheap) that has "anecdotally" helped a lot of people with fibromyalgia. Stanford did a small successful study on it. It might be worth a shot.

    Sorry about your house. I went though a similar situation. It sucked.

    Okay, nothing like jumping into a conversation without introducing myself...hi, I'm Kathy, nice to meet you. Like your blog!

    Take care,

  6. Hey just wanted you to know I've been thinking of you and hope you are hanging in there!!!

  7. Goodness, so much to worry about! I hope the home stuff works out for you. Sounds like school would be difficult for you to do - maybe now isn't the right time for an additional challenge. Don't forget to take care of your own needs. I'm glad the new combination of meds is doing better for you. Take care and keep us posted!

  8. Hi Jessi, I hope you are doing okay and made it through the holidays alright. Been thinking of you and just wanted you to know. *hugs*

  9. So sorry you have to loose your house. No matter what, put your health first. I just lost my house and everything with it going through a divorce. I am now paying rent to live with a dear friend.

    Surround yourself with your closest friends or family. I have the option to live rent free with parents on a big farm, but my health would not improve with family stress. This is why I have chosen to help a friend with money I otherwise could be saving. This makes me feel better in helping someone. I still can go visit my great aunt and family a couple hours away, but my budget is tight. We all seem to make sacrifices for our health. I am hoping for better days for all of us with fibro.

    Until then, BIG ((hugs))

  10. Im sorry you have so many bad things going on right now. I have also perfected the push and crash cycle. UGH.

    Do you get disability? Just wondering because I have been denied twice and have appealed again.


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