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Im sad

Discussion in 'Lifestyle Management' started by shrewsbury, May 14, 2010.

  1. awol

    awol *****

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    Koan,

    ok agreeing more now. Peace and love. To clarify my earlier comment, the sense of humour is low because of poor information processing so not much to be done I am afraid. In my slumps I can still make jokes, just usually don't understand the jokes of others fast enough to catch the moment.
  2. Stone

    Stone Senior Member

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    I'm sorry to whine, but I just gotta say this is relly getting to me right now. I got into a major pain crisis today, and gathered up the courage to call my PCP's office. Was informed I had been a "NoShow" for an appt on Monday, of which I was totally unaware. Its not in my book, not in my phone, and I did not receive the usual computerized reminder call, so now I'm really in trouble. I explained to the nurse on the phone that my pain was out of control and I was in crisis. She checked with the doc, and called me back to tell me she could not see me. I asked if there was someone else who could see me (yes, I had to ask), and I was given appt tomorrow with a PA. I asked what I should do until then since I am in intolerable critical pain. She checked with doctor who said go to ER. Well, I used to be a nurse, and I'm telling you, going to the Emergency Room for Fibromyalgia/CFS pain crisis is not going to go well for me I can assure you. They will think I'm a complete nut. So I opted to go to urgent care center. I was in so much pain my BP was 160/100, and normally my BP is extremely low. The doctor came in to see me, never examined me or touched me in any way and informed me that they could not treat me there. They refunded my money and referred me to ER. I just came home and knocked myself out with a sleeping pill (elephant dart, I call it). I'm still in bad pain but not in crisis like before. Jeez, I could have stroked and they sent me out of there because they don't treat Fibromyalgia. That was the reason. How do they know the pain in my legs is fibro anyway? How do they know it's not bone cancer or something? (God forbid) No one will actually examine me. Okay, now I want to type curse words, so I'll stop. But seriously, I'm really getting so worn out and I cant take this crap any more. Thanks for letting me vent. I'm also tired of watching my loved ones feel so helpless and distressed over my distress. Sometimes I want to disappear and go suffer someplace where they don't have to watch it My husband said that if I were a horse, he would have had a hard time not putting me down this afternoon. He meant it in love, but you know how guys sometimes express such things. Ok I'm done complaining for now. Too tired. Thanks for letting me have a place to state this to people who are familiar with suffering.
  3. gracenote

    gracenote All shall be well . . .

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    Stone,

    Here's a hug. Not much, I know, but it comes with concern and care. I hope you can rest well tonight.

    :hug:
  4. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Research Lidocaine infusion. I had this done last fall and it knocked my pain down by 3 to 4 points!

    Best of luck, not easy to find!
  5. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    This is very much how I felt last fall with my major flare up! Hard to laugh at jokes with cognitive dysfunction.
  6. Stone

    Stone Senior Member

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    Okay, another episode of "I kid you not". Remember the appointment I mentioned they had scheduled for me with the PA? Well I went to that appointment, which was scheduled after my occasional regular standing appointment with my counselor which had previously been scheduled. I told my counselor of the problems I've been experiencing with my pain and with the lack of treatment or response from my doctor. He immediately got on the phone and personally made me an appointment with a MD coleague of his whose practice is closed, but he got me in to see him. He had all my info there before him and all I had to do was sit there in pleasant awe of the man, who told the doctor personally that I was probably not currently receiving adequate medial care. I burst into tears of gratitude and relief, looking forward to my first appt with a new doc next week (fingers crossed). Thus encouraged, I kept my scheduled appoointment with the PA for my (now soon to be former) doctor. I told her of my worsening terrible pain, the pain crisis of the day before, the dangerously high blood pressure and the lack of treatment. She checked with the doctor who told her not to do anything for me. The PA came back into the exam room, knowing how stupid it was not to treat me, but said her hands were tied, and would offer no suggestion as to how I should proceed if I encounter another pain crisis. I said, "I think a PB of 160/100 is dangerous, don't you?" and all she did was look at the floor in embarrassment, I kid you not. She handed me my bill, which I took to the front to check out. I looked down at it on my way to the check out desk, and noticed that the doctor (it was her handwriting) wrote for my diagnosis for that visit, "Depression". I'm not kidding. She never even laid eyes on me, just the PA! So, all in the same morning, I had my shrink make me an appointment with a new doctor because I'm not receiving proper medical care, and my current (soon to be former) doctor diagnos mee with depression based on nothing. And here's the fun part: at no time did the PA or doctor ask me any questions to assess me for depression, such as "How is your appetite?" "Are you sleeping ok?" and yet the doctor wrote "depression" as the diagnosis, and as if that weren't bad enough, she never offered or suggested any kind of treatment for depression, so I KNOW she doesn't really believe I'm depresed, she just has to cover herself for not treating my physical symptoms. When a doctor thinks you're truly depressed, they offer you antidepressants, ask you if you have a support system, blah blah blah. This didn't happen. Depression or my mood or state of mind NEVER CAME UP IN THE CONVERSATION. Ok, so I get the hint. Me, my disease and my pain are not welcome at this practice. No problem. I'm outta there. Wish me luck with the new guy.
  7. gracenote

    gracenote All shall be well . . .

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    Good luck with the new guy, Stone.

    Let us know how it goes.
  8. Stone

    Stone Senior Member

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    Thanks, Gracenote.

    Oh, and gg, I've been searching high and low for lidocaine IV. They all either look at me like I said "blood-letting" or they say, "we don't do that anymore" and won't give an answer as to why. I'll keep looking and keep asking. The alternative is to give up, and that's not an option. Thanks y'all
  9. Michelle

    Michelle Decennial ME/CFS patient

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    My arms are too sore/weak most of the time to participate in discussion here -- talk about isolating! -- but I wanted to say:

    Stone -- I'm so glad your therapist is helpful! That doctor sounds like a real bitch. I'm so sorry.

    Shrews -- Thanks for this thread. I had a period of sadness this winter/early spring that I'm still feeling off and on. I had to accept that I was sad and be sad. And then I had to find joy. Now. In this. Even though I didn't want to. Mostly I have. Mostly.

    Koan -- As always, you make me smile. And feel better.

    akrasia -- Thank you for remembering us lurkers. I feel forgotten about here most of the time, even though I'm here everyday and have been longer than almost everybody here. Like so much else in life, this forum favors those who produce, leaving those of us who can't to merely watch while others get to communicate and make friendships.

    How's that for wallowing? ;-)
  10. gracenote

    gracenote All shall be well . . .

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    Maybe we need a "check-in" button for people who are sharing in the posts but not able to post themselves. Or something like facebook has where you can select "like" and your name will show up with a post. I would love to know that you and others are participating even when we can't see you.

    Hi Michelle.

    :hug:
  11. shrewsbury

    shrewsbury member

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    [​IMG]

    ah Michelle,

    you deserve to wallow, just like your sadness is warranted. Very glad you're finding the joy at the same time.

    I'm always so happy to hear from you, friend.
  12. Koan

    Koan Be the change.

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    Michelle!

    (((((((((Michelle)))))))))

    What a lovely surprise! Ok, I was having some trouble initiating my happy today but seeing you is such a nice surprise that I now feel quite sure I will be able to get it going.

    May I share one of my favourite songs from one of my favourite musicals? What's that you say? Yes? Ok then!

    [video=youtube;LnLKbc2hvxk]http://www.youtube.com/watch?v=LnLKbc2hvxk[/video]
  13. ahimsa

    ahimsa Senior Member

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    Hello, Michelle!

    As someone who knows Michelle in real life (mostly phone/email but we have actually met in person a few times) I can tell you that she has a great attitude! (in addition to being one smart cookie) So, I got a nice laugh at the "wallowing" joke especially after the cartoon pig that shrewsbury posted.

    There are just too many wonderful people out there with this d*** illness! :( But maybe there will be some better treatment options soon. I go through lots of sad periods, for myself and for all the others out there, but I refuse to give up hope.

    Sending many :hug: HUGS :hug: to Michelle and to all the other lurkers who are reading this forum.

    Marjorie
  14. Stone

    Stone Senior Member

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    Thanks, Michelle. Yeah, the data is in, the doctor is a real bitch, although the c-word has also been bandied about in some group discussions of her treatment of me of late. My big sister is considering letting the stale old air out of the doctor's tires for her so she can call AAA and have some new fresh air put in them, you know, as a favor to her for her kindness. She goes into 'momma bear mode' when someone harms me or my kids, so I'm working on keeping sis distracted with more constructive projects. If any of you pray, please pray for my visit with new doc to go well. If you hope, then hope. If you send positive energy, then please send it. It's impossible not to get my hopes up even though I'm trying not to expect too much. Doctors aren't taught 'jack' in med school about this, and there's DISinformation from the CDC and the general media so it's not usually prudent to expect doctors to treat this as if they know anything about it at all. But I'm not convinced this horrific pain in my legs is CFS/FM entirely. It's surely a factor complicating it, but I feel in my spirit that it's something else, and 15 years of experience and study of this disease support my feeling that there's something else going on and I'm hoping to get to the bottom of it. If it does turn out that it's nothing other than CFS/FM, then so be it, but I simply must have adequate pain control if I'm to have any quality of life at all. Without that, what is there? Peace and wellbeing to you all, and thanks for tolerating my tales of woe, which I'm sure are NOTHING compared to what so many of you go through and bear with grace. It's just that grace under fire is elusive for me these days. May our days of wholeness come speedily.
  15. gracenote

    gracenote All shall be well . . .

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    It looks to me like that pig is "wallowing" in chocolate. Or is that just me wishing I had some!
  16. Michelle

    Michelle Decennial ME/CFS patient

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    Sorry to be so long in responding -- had a nasty crash last week along with problems with my ever-dysfunctional sacro-iliac joint. Thanks for letting me wallow a little. Being housebound feels so isolating and not even being able to participate in discussion here feels even more isolating. When I finally am able to participate, it sometimes feels a little cliquey and I feel jealous that I can't be apart of the clique.

    Gracenote, that would be a brilliant idea! I do love the "like" function on Facebook. So easy to comment without much effort. And I love Twitter. I have another online community that I've felt increasingly isolated from as I've gotten sicker and Twitter has been the primary way I've kept in contact with that community. The thing is, I got to know a lot of them while I was healthy enough to post, chat, and blog. The really frustrating part here is that as I've gotten sicker, I've wanted to connect more with other PWM/C but by then I've been too sick to connect.

    I should note that I count Marjorie as a good friend. Not only do I love hanging out with her when we're both up to it, but she's also really helped me out on a number of occasions. The forums are lucky to have her here. :)

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