Current health hell

Some body save me from myself. I’m really wondering, how did it get to this point? And then I remember. Oh ya, I’ve been a spoonie since age 11.

I’ve had a morphine pump since march 2013. It started to affect my memory about 6 months in. After about a year, it got really bad. So bad that I started withdrawing socially. It affected me at work, basically every fn aspect of my life. The only comparison I can give thats close to it is alzheimers. It was severe, it waa scary and I honestly thought it was my brain and not the pump. So for months I begged for a brain scan, a neurology appt. Went thru several appts and hassles on that. The end result was my pain mgmt offered to change the med in my pump to dialudid. I was already on a low dose of morphine, but taking 6 other meds, in a world of pain and now in a deep depression for the first time. I had heard dialudid worked well so I figured it can’t be worse than what I’m at. I gave it a month. I basically slept for a month. I lost my job, my kid moved out, can you see my time line slowly plummeting?

I get that I gave more spine conditions than a normal person. I also know that they have exhausted all procedures, meds, methods, and the pump was my last resort. I got it because I didn’t want to be high on meds. Instead I’m a fn mess, sick, can’t eat, sleeping all the time or not at all, unable to work, depresses anti social basket case. I’m not the same person. I can’t tell if it’s all the meds, or the compound of shitty things happening in my life. But I feel in my heart, I don’t want a machine in me going 24-7. There has to be a better way.

So my dr lowered my pump to a basic trickle. And what I’m feeling is like Mfn heroine withdrawel. I used to work in a woman’s rehab. Before my disability got the best of Me and worsened, that was my career. I’m well awaRe of opioid comedown. I’ve seen every drug withdrawel there is, and this isn’t pretty. It’s one of the worst. I’m at the level for pump extraction but my dr wants me to feel what it’s like at this level before making a decision. Meaning, she wants me at maximum pain. I understand,  it’s not a small surgery. It waa weeks of recovery time and two scars. I’m on day #2 and I’ve dry heaved, cried twice but I managed to go pump gas and get coffee which is HUGE. I have to move today, they are sending movers at 12 and I’m all by myself so I’m going to try and just sit here and give orders because my energy level is negative. My pain is a 12, but I am feeling less shaky than yesterday. This move has taken so much out of me, angry because I’m being forced due to water issues and I’ll be glad when it’s done.

I haven’t has an Mri since 2009. Not sure why, fear perhaps? The uc davis spine center where I am requesting to go requires a new mri, so both my pain mgmt and my primary have put in referrals for one. Sadly they are both on the same page that my conditions have worsened and that it is time for me to seek other alternatives, at uc davis they specialize in my conditions. So the next few months will be rough. I get to taper off dialudid, go down on my topamax, I’m going off Flexeril, all to determine what side effect is coming from what. Then I will be hopefully going to uc davis soon and seeing a specialist, and go from there. It’s just having the strength to get to that day lol

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4 comments

  1. painkills2 · October 24, 2015

    After filing for disability, I was evicted from my apartment and moved in with another pain patient. This woman also had a pain pump and took pills. The behavior you describe is what I witnessed in her. And it’s one of the reasons I decided against a pain pump.

    You may have witnessed opioid withdrawal before, but experiencing it is something else entirely. During a forced detox, I didn’t sleep for 7 days. Seriously, it was a little slice of hell. But what you may not know is that the recovery is longer than just the initial comedown. I’d say it took about a year before I was back to “normal.” Don’t mean to bring you down, just trying to warn you.

    Even though I never had a pain pump, I was taking a lot of prescription medications. Sure, I suffered side effects, but it was worth it to relieve the pain. What’s the difference in my pain levels since I stopped taking drugs? When your pain levels are as high as mine, it’s hard to be specific about the differences, but of course it’s a lot harder to manage the pain without the drugs. In the last 3 years without meds, I’ve suffered from pain storms that I never had before. As long as I have bud, I seem to be okay, but I can’t survive without some kind of pain relief.

    The problem is the degenerative nature of both of our conditions, which means the pain will continue to increase. How quickly that will happen depends on being able to manage the daily pain. I only decided against the pain pump at this time because I don’t think my current pain levels will remain stable — I’m saving that option for the future. I think what you need is a long-term plan…

    Like

    • butyoudontlooksick77 · October 27, 2015

      And I thought the pump was my long term plan. Back to the drawing board. Now that I’m on day 5,I know I am in withdrawel. It’s like nothing I’ve felt or can describe. All I know is I couldn’t live with the pump, so I will be in this other temporary hell in the hopes of some other solution. Thank you for your words. Just knowing you understand, gives me solace.

      Liked by 1 person

      • painkills2 · October 27, 2015

        It’s hard to make a long-term plan when we have so few treatment options to choose from. And because I’m older than you, my definition of long-term is probably a little different than yours. I’ve had 30 years to think about these things, and my long-term plan includes how much pain I’ll be in on my deathbed and what treatment options I’ll have access to at that time. (Sorry, too morbid?) I’ve been able to chart the progression of my pain levels over the last 3 decades and I hope that information gives me an idea of what I can expect in the future. Just keep in mind that it’s very important to be flexible with any plans you make — I mean, I made a long-term plan to be on prescription medications, but that didn’t work out. Now my long-term plan still includes opioids, but after that detox, I hope to hold out as long as possible.

        Try drinking a lot of water, and although everyone is different, pizza seemed to help me. 🙂

        Liked by 1 person

      • butyoudontlooksick77 · October 27, 2015

        I lied, it wasn’t my long term plan ( excuse my brain while it’s way out of sorts. Feeling a bit better today. I finally got some sleep) It was my five year plan. All I wanted was 5 years, long enough to work so I could provide for my kids and help get them off to college. I’ve been in pain since I was 11,12. I’m 38. I’m single,and unable to give them the life they deserve. They are teenagers, both now just starting in high school. I felt the pump could give me those years. I know I’m not supposed to work, that my pain is severe and my conditions complicated. I guess I was hoping for a little extension of time so to speak. It didn’t work out, I’m not working now, things with my teens arent the greatest but when is it lol and I’m back to looking at my options. Options I keep running out of. You’re damn right, making long term plans when we don’t have a lot of plans to choose from isn’t easy. Us spoonies are always in survival mode. That’s why I stay so fn grateful. I’m grateful I woke up today, even if I did run straight to the bathroom. I’m grateful for this convo, even though I’m in tears. This is my life, and I’m going to live it. Right now, it sucks lol but it won’t suck this bad always. I was able to get an MRI appt for tomorrow. Apparently they think I need to be seen right away. Im feeling a lot of emotions about the whole thing, add the comedown, the fact I’m already an overly sensitive woman and well, I’m just hoping for the best. But I will be taking your advice and getting some pizza later today 🙂

        Liked by 1 person

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