Thursday, July 22, 2010

The Day That Wasn't Meant to Be

I woke up very unrefreshed this morning, which isn't new for me. I also felt detached and very annoyed. Should have taken this as a cue to stay in bed. My pain levels were ok, not horrible, not great.

Eventually I checked my phone and noticed a message from my Neuro's nurse. She said that my pain pill, Tylonol with Codine, couldn't be refilled until the 28th. The bottle says to take them every 4-6 hours as needed and contains 24 pills. I found this confusing that it couldn't be refilled since I didn't even get a month's supply. She also wanted me to sign a Narcotics Treatment Consent form. I had no idea what that was. I went down to the Neuro's office to get things sorted out. I guess my Neuro is very reluctant to prescribe pain pills and narcotics to begin with. There have also been a few doctors in the news lately that have been getting in trouble from patients on narcotics. The form basically said that I will not be a drug seeker, and I will not sell my pills. I may have to consent to random drug tests from my Neuro and if I get addicted I can't use alcohol or other drugs. I've never done any street drugs in my life, so I don't really have a problem with having drug tests. I don't see myself getting addicted either. I don't take the pills that often. I have been needing them a little more lately since living in the "Land of 10,00 lakes" also means the Land of Humidity. Humidity and heat and fibro are not the greatest of pals.

Part 2 of my day that wasn't meant to be is regaurding my SSI/SSDI Disabiliy application. As you can guess, I was denied. I know many people get denied their first time, but it just hit me hard. I was counting on this money to be able to pay off bills so that the bill collectors can leave me alone. I counted on it to be able to move, and be closer to the friends I need. I cried about it, and I am still feeling sad. We haven't paid our rent this month because my fiance's hours got cut. We didn't have the money. We still don't I don't know how we are going to pay next month's rent either. I've never been able to do a full time job, the exhaustion just got to me. But ever since the fibro went into full swing, I've had to quit my wonderful job at JoAnn Fabrics. I also recently had to give up my hours at my second, VERY part time job of 11 hours a week at a local game shop that a good friend of mine owns. I feel bad that I am unable to contribute to paying the bills. I know it's not my fault, but I just feel so guilty about us falling into debt while I writhe in pain everyday.

There was a nice thing that happened today. While leaving the Neuro's office a woman complimented my dress. I thanked her and told her I made it myself. She then went on to say how it looks "very Japanese". She vaguely recognised lolita fashion! That made me really happy and hopeful for the future of my line Seraphim Feathers.

I've been doing my best to stay positive, but it just seems like things have been going downhill more and more lately. I think I am going break my diet and have some comfort food tonight and hop back on the positive wagon tomorrow. Sometimes you have to do that when life gets you down, just don't over do it.


  1. What worked for me was to break down the symptoms, like headaches separate from the fibromyalgia, same with the memory and concentration problems, separate from the fibromyalgia. It helped me get approved. If this is what you did, I hope it works for you in the next step. Good luck!!!! I know how hard it is to get SSI/DSSI, I waited 7 months before I heard anything. I hope you get approved soon.

  2. I talked to my rheumatologist about Savella yesterday and he was really positive about it. Of course I can't take it or Lyrica until I stop nursing.

  3. hey there :)

    you're a great person, with a good heart, and I'm sure that things will start looking up soon. stay strong and don't give up!