First off, I am in an odd mood, which may be because we were notified Sunday night that roofers are re-roofing for this week and have been given permission to start at 7:00 am so they don’t get hot (oh, the poor dears!). Actually they start before then 6:45 and carry on after they are supposed to finish. This makes it pretty much impossible for someone with hyper-somnia (the need to sleep every six hours) like ME, to get full rest.
Lyrica and the pain meds are not working as well as at first. This could be because a) I am actually doing more like going out in my wheelchair today for 30 minutes and yesterday for 30 minutes including wheeling up a hill. Or b) Because I am not getting enough sleep. Or both. So that sucks because even on Lyrica I was in constant pain, just the sort of constant pain I used to get after a really hard core work out. But not like I was being set on fire (which is what I was like). But for example, my night pill was 40 minutes late last night, and I had to knock for it and my arms were shaking very badly from the pain, plus the joy of knowing that I had to wait 25-30 minutes for the Tramadol to kick in.
But mostly I have been asking people this question, which I ask you; “Would you stay around, going the whole ride, all the way to the end? Or would you have an exit plan?” It turns out this is not the thing to ask your careworkers. Can get you labeled for a visit from the Mental Health assessment. See, even if the dying thing is slowed or halted, the peripheral neuropathy, which I believe is causing the pain (hey, thousands of nerves dying HURT!), marches on, marches upward. Is a life paralyzed with the risk of seizures, stokes and ever increasing pain enough? Because by the time it gets to that, the chance to take my life will be lost.
I suppose this isn’t what you expected when I got a lot more clarity of mind, but the truth is yes, I have been calling the gliding program 9 times (out of office or busy) and sending them an email (un-replied), and fighting because some of my regular care givers have been taken away and the new ones are not briefed on anything (ergo, I am more exhausted when they leave than they are). But I have also been catching up on grieving and “where am I?” and a lot of the questions asked like, “Why do I spend my money on postcards and gifts instead of neurologists?” and “What is the point of it all McClung?”
I have on my table a copy of the test results and about a third of them are abnormal, marked, mostly low, some high. There they sit and do I want to find out what it means to be low in this and high in that and low in this and low in that? Not today. Tomorrow or tomorrow after tomorrow I can figure out the likelihood of how that ties together. Right now, I have roofers banging over my head, I have pain, I have a future where surviving is supposed to be enough. It isn’t, not for me. Not today. You know how much you hate your job? I want it. You know how much you hate your family reunions? I want them.
I don’t know what it is, because it ain’t PMS. It is where I am. I am still going to go out, that’s the only way I know to deal with it, make plans and gut it out. I dunno, I guess a lot of people could have handled my illness better than me. Sometimes I don’t even know why I do what I do, I just know that I have to do it.
Know why I like Hello Kitty? Because Hello Kitty simply is, Hello Kitty reminds me of me. When Hello kitty is cute, she is cute. But when Hello Kitty is a punker, she is a punker (albeit a cute punker, cuter than I), when she is doing hula, she is saying “hula with me”, she is writing cards, she is biking, she is working in a Maid Café (Don’t you know when to say “no” Hello Kitty!). And that is what I try to be. To be what I am at that time and simply be that. And write about it, and show it. I tend not toward cute, I am the OTHER side that Hello Kitty doesn’t go into that often. But maybe, because Hello Kitty has to keep trying new things (Las Vegas Showgirl?), she doesn’t know peace either. If you want answers, wrong post. If you got answers, sure, hit me, literally. Today Linda held me in bed until the sedatives wore in because I was mumbling about “gotta sell that manga to buy a shotgun.” I’m ready to be told how I screwed up, in a gold class way.
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9 hours ago
22 comments:
Yeesh, I'd be in an odd mood too if my sleep were being disturbed that badly, and I only get headaches when I'm tired...
Hope the painkillers, sedatives and roofing twits allow you to get some rest soon.
xx
Dear Beth,
Hang in there! I'm going through a bad no-sleep period too. And roofers! Arrgh! & Ugh!!. I hope they're done soon. Are you able to increase the Lyrica? Sometimes meds don't even reach they're full effectivness until you've been on then a while. Also, since your GP messed up on getting you to the pain doc in a timely manner, maybe he'll be willing to prescribe something stronger than the tramadol (or a higher dose, if that's safe) until your appt. with the pain doc.
Yesterday morning after finally getting to sleep at 6am, I was awake 3 hours later. Then I had to deal with the fact that I didn't know when my next IVIG (due Thurs) would be or even if it would be, since pesky insurance doctors were now reviewing my case. And part of the reason I couldn't sleep is because I'm sick with a fever & respiratory infection on top of the sinus infection I already had - so i need my IVIG. I called the case manager at my insurance co., left a message. Called my contact at the special pharmacy, no call back. After a couple of hours, I called my pharmacy contact's assistant. Found out that he had spoken with my case manager & faxed her the papers in order to sign a contract with a new nursing agency. So at least I know I'll be getting my treatment - just don't know when. But the medicine is being shipped to me, so, I'll be ready.
And now, I'll have to deal with a new nurse. I don't know if s/he will be properly trained - it's kind of a specialized infusion - must be done at certain rate, etc. So that will wear me out, as I'll have to keep an eye on the nurse all day. So I understand about care-givers leaving more tired than when they came.
And I called my doctor & she rxed a different sleep med for me. Doesn't seem to be working too well as it's after 4 am again & I'm up. But I did sleep for an hour of so earlier this evening.
Did you get the e-mail I sent you about the NIH Undiagnosed disease program? If you qualify, I'm pretty sure there's no cost, except transportation. Or we could try to find a doctor in the US who'd see you for a consult pro-bono. There should be some benefit to being such an unusual case.
Hope you are able to rest & that the roofers are all late today or taking the day off.
Sharon
I hate the noise of workmen - it's never so constant that I can screen it out. And I always feel a bit mean about hating it because they're doing what needs to be done. I hope the roofers are finished soon.
I think, if it were me, I'd want to be around to the end - but I can't tell till I'm there. I always want to know what happens next and I always want to see and hear what's going on - even if it's something small and close at hand - that may suggest that my view of life is governed by obsessive reading of literature.
It's your life, your illness and your decision. Because you are intelligent, you need to think things through and weigh up all the possibilities - it's what Ph.D. students are trained to do, after all. And I don't see why you wouldn't approach this question with less intelligence and thought than any other. And you will also, of course, think about the effects on other people who value your presence in the world - because you always take other people into account.
As always, much love - and I wish you happiness, even if you find it in fragile moments rather than weeks packed with pleasure.
I don't know if I would stick for the whole ride or not in the face of something degenerative and painful. I'm pretty sure I won't know unless or until it happens to me - and even then I'll probably change my mind day to day or even minute to minute. I can say that depressed and suicidal is one of the first things my brain heads for when severely stressed.
It's actually on my mind rather a lot lately. My maternal grandfather had Alzheimer's, Parkinson's, and several strokes. He spent the last year of his life thinking he was waiting for a train in the Chicago station (he was a traveling salesman most of his life). On the one hand, it sucked. His poor cognition meant that every pain or procedure was a nasty surprise because he couldn't remember that he was elderly and sick. On the other hand, he still had visible pleasure in life. I could bring him a Frosty, and he would eat it and chat with me, grinning the whole time, even if he did think I was Mom.
I'm pretty sure it would have hurt Mom a lot more if her father had committed suicide than having that last year did. I would have understood - but I was suicidal myself at that point in my life.
I honestly don't know whether I'd have an exit plan or not. I'm not sure. Kids change things since they wouldn't understand that kind of choice.
I don't think other people would handle your illness better than you do, I really don't.
I was wondering if you liked the Lenore books. I'm trying to get an idea of your taste (I think I know what you like in clothing). ;)
Hoping that the roofers finish quickly. Are you up to the full dose on Lyrica yet?
Oh, I don't know about you not doing cute very well. You're tall, though, and (I think we've been here before) tall people don't get called "cute" much. You're supposed to be short if you're cute. But YOU are EFM and, like Edda in 9 Chickweed Lane, you can be anything you want.
I suspect Hello Kitty attracts you partly because she's able to try all sorts of different experiences, has many different lives. She's whatever someone wants her to be. Unless you hate Hello Kitty; then she's nothing but omnipresent and annoying.
I wont try to say I understand your mood swings (admit it, NOBODY understands women's mood swings), but they're to be expected. We all have mood swings, but your life is so full of extremes that the mood swings are bound to be deeper then most "normal" people's. That's not really a good thing, but it's not something you can choose. We get the hand we're dealt and don't get to exchange any cards, damn it.
So while neither of us can understand the other (men can be mysterious too, you know; especially men on the Internet), please remember that you are loved, first by Linda, and then by all of us reading and hoping and praying for you. I'm here for you, and I know most of the others will be, too. I know wishes don't help when you're screaming with pain while waiting for the meds to kick in, but try to remember that I love you for who you are, pain, mood swings, Hello Kitty addiction goth tendencies and all.
Zen hugs,
Neil, EFMinion-on-the-prairies
Other people might have handled a similar illness differently from how you are handling yours, but I don't see that many people would have handled it better. You are making an effort to live rather than simply to exist, even though neither option is easy.
Also, we know not to expect what we expect with you.
I think that if I were in a similar position, I would want an escape plan, and would feel better knowing that I was staying alive willingly rather than because there were not other options. I do not think that I would use this escape plan. I do not think that you should (yes, I'm being selfish on behalf of myself and everyone else who knows and loves you).
We are all here for you. Be who you are, and write what you write.
Nope, you do not need a shotgun.
You do need quiet and sleep since the fatigue is probably decreasing the effectiveness of the Lyrica.
Would I stay for the whole ride if I were you? I have pondered that since reading last night and I still don't know. I know I want you around as long as possible, that I want you in my life as a physical presence. I would understand if you chose to take your life but I am hoping that you are willing to stay on the ride a while longer.
Firstly, I'm glad you've finally got your sticky mitts on those results! Yes, you do need to know what each result actually means because that explains why certain things are happening and could help you take steps to lessen the effects.
Everybody screws up 'in a gold class way', it's called being human. And no, I don't think you're 'doing it' any better or worse than anyone else could - just differently according your individual needs. That's all anyone can do.
I got my postcard this morning, thank you! I think it's extremely cute and loved the stickers Dad got a chuckle out of it too :D.
I'm not doing a paper on the subject, I am going to make a documentary about burlesque....or maybe sex workers in general (my research is taking me to some wierd and wonderful places and putting me in contact with some fascinating people!).
I'll keep you posted ;-).
*email follow up comments* (I'll get this right one day dammit! haha)
Hi Beth,
I can't imagine the disappointment with the increase level of pain returning. We will hope that some combination will work to keep the pain at bay. I don't think anyone could have handled this illness better then you. KNow we are thinking of you and Linda. With all my heart I hope for better days
Collette
Sort of waited until everybody said all the clever things. I really don't want to say anything since I am so far away.
I'ts something to discuss with those closest around. Read Cheryls comment, thinking people like her and certainly Linda shoud have a say.
But I'll go for some of the things Abi said. I would probably have a backdoor plan, just knowing would probably make me feel better.
There is no gold, or silver way to live or die if you do it honestly to yourself and try to give what you can to others. Life just is.
And about lack of sleep, pain and handymen they can definately drive you over the edge. So as said by somebody else, hang in there.
Hi, Beth,
I was diagnosed with Complex Regional Pain Syndrome earlier this year, so I do have some understanding of the nerve pain thing - it is the worst kind of pain I can imagine... the burning, the feeling of being electrocuted... ugh.
Thought I'd tell you my experiences with Lyrica and Zytram XL (extended release Tramadol). I have taken 150 mg of Lyrica 2-3 times per day. I noticed the effects right away, but it also improved after taking it for a while, so it should get better.
The Zytram I take is a 24 hour extended release (300mg), which takes while to kick in, but provides a good base level of pain relief throughout the day and night. Just don't go sleeping in and missing your pill taking time by more than an hour or 2; I've done this and been VERY sorry.
I also take generic Percocet (oxycodone and acetaminophen) for pain 'flares' and 'breakthrough' pain, which does happen, unfortunately.
I hope these numbers help you determine if you're on the right dose for you. I should mention that because the pain I suffer, and clearly this applies to you, is so severe, the pain medications do not relieve anywhere near all the pain, but do help me function, mentally and physically, more than I would be able to otherwise.
Lisa Moon: Did you get that through your GP or a pain specialist. I have the same drugs only my sleep pills are 100 mg tramadol; 200 mg for four hours on bad nights, then 100, for morning, if I miss by 30-45 minutes, I am in freaking agony. This Lyrica during the day with another three pills of tramacet which is like nothing now. I wish I had a 'break through' drug; my caregiver has to wake me up to give me the four hour pill of 100 mg tramadol or I wake up from the pain - tried to cut that twice since being on the lyrica but no go, the pain is just too much.
Thanks for the info and the numbers, they make me feel less alone but also - yes, in constant pain, of various intensity all the time anyway. So less alone in that too.
Abby: Well the roofers worked directly overhead and actually were so violent and banging that lightbulbs in our apartment exploded and I had someone come over and take down the pictures (what are they putting the roofing in with, sledgehammers?)
Sharon: Wow, when I read what hell you are going through, I wonder how you do it, I just keep focusing on what needs to be done from one sleep period to the next (six hours in my case).
I just hope he remembers to MAKe the pain specialist appointment. I wish some of these specialist would come back and be like, "Why did you torture this person and not prescribe them X months ago" to GPs - which is what the ER basically said to me on the phone.
I don't know how you do it, I am so tired of fighting, fighting for everything and yet I know your last three IVIG's have all been fight, fight, fight, - the insurance, the nursing. I know you have to have it but WHY can it never be easy. I hope you get it, the nurse is better than any you have ever had, you get the treatment followed by sleep and then remission.
I got the email about the program but I haven't had time putting out fires to follow up on it. I just wish you could get your IVIG and get better and a remission. Thanks for sharing all this. If I don't get sleep tonight I will get a fever again (I had one last night) - whenever I get fatigued I get a fever, so I don't know if that is the same or different from yours. My body just can't seem to control all the things at once and goes, "oh you want breathing, well fine, have a three or four degree fever in the meantime with headache and all that" - I have actually gotten used to that. I mean the bedside has the oxygen, the BP cuff, the pain meds, the sedatives, the ambibag, the ear temp dectector and a bunch of other stuff, including a stethascope. I should get a little black bag, you should too!
I don't get it - do they think you just "overcame" Lupus and CVID since last month or are they just pain in the ass people who seem to get these jobs?
Kathz: I am with you there - hate the sound, hate it overhead, hate it in MY space.
I have to say that "the doldrums" rather than perhaps the intellegence of a ph.d person is weighing up these options. I just feel energy enough to feel tired there is nothing to look forward to but decline.
Perpetual Beginner: Yeah, that's how I am this bit, one day "no way" next day, "Better think about it now before it is too late!"
I know that killing myself at some point would hurt Linda but even Linda has said that at times, when she sees me in such mental clarity and such unbelievable agony, to be asking her, "Let me sleep, let me sleep." part of her just wants to keep me there for her. I think sometimes, my living hurts her more, at least in the short term.
Frida: Yeah kids don't understand that kind of choice, but I don't know how well kids understand degenerative illness either. But then, if I am feeling abandoned by my relationsions, I can guess that someone close commiting suicide would make me feel abandoned, regardless of logic.
Tom P: I did, working on them now - I sent you an email about them, I hope you got it.
Neil: yeah tall is not considered "cute" you are supposed to be like 5'4" to be cute. I was gangly but not cute. And even I HATE aspects of hello Kitty, but hey, that's because those are the parts where she has sold her soul, or where she is too cute for words - I like my cute with a bit of raw. But to universally hate Hello Kitty - to hate a toaster that lets you EAT hello Kitty's HEAD every day - hmmmm, how can that be?
I wish I understood this mood swing - I mean, I am doing stuff I haven't in months - going out at night, not being in pain...as much - why am I so freaking suicidal?
Cheryl: oddly you came up last night, as I was determined to come see you since, I suddenly said, "Cheryl has a gun, she's a ranger." Two second pause, "Hey Linda, I really want to visit Cheryl this weekend!"
Well I still have a significant amount of hand use, even if I can't feel them. so Yeah, I should focus elsewhere and stop being so freaking moody (so am I aligned to you AND Linda now - that is hell!).
Abi: Well, I guess most people wouldn't write about thinking about shotguns, they would hide that. I don't but I am GOING to get rest and then I am going to get back up - being up and being down and getting stuff done in spite of it, that is me, illness or not, or maybe how the illness has shaped me. Sure I want to escape, who wouldn't. After all the horrid tests they have asked me to do one and then another and another - what is pulling one little trigger compared to that. But if I go out, I want to have it as a choice, not running AWAY from a choice.
Gaina: I am really glad you got the stickers, was it not appropriate? Do you want to move up to the R-rated version of the postcard?
Yeah, I know I have to figure out the results but why can't the doctors do it for once (whine, whine). I just want a bit of sleep and silence and then I will be ready for the next battle or whatever. Why can't people just freaking do what is best for the patient, why does person fear or litagation or ego or "not my inch" or "lets wait for the specialist" always get in the way? (whine part II).
Collette: Sorry, this post, while a disappointment is reality so I am frustrated at the pain too. But I believe with rest and maybe a dose increase things will get better and if they don't, I still had a night out, I still had a few days to take pics of many of the prezzies and postcards people sent - I had mental release for at least a few days of that pain.
Anna: Seriously, three straight days of hammering would send Mother theresa over the edge, I believe. I might make a plan, not a "reaction" but a plan, and then when the time comes, see how I really feel. Becuase I still have 8 reasons to find and expound on why I want to live, and seven which still exist, diminished in all this noise and pain but there.
Thanks
Lyrica can cause suicidal feelings. Maybe increase your omega-3 (natural antidepressant) to try to counterbalance?--that's what I can think of in the shorterm. Levaquin (antibiotic) does that to me *every time* I take it more than a few days--my husband calls it the lemming drug. Most of the time I'm aware it's the Levaquin, last time neither of us were and it got scary. Off Levaquin-->everything's hunky dorey again.
My least favorite roofer experience was when our teeny house was reroofed during my final papers and defense during my master's degree. Shhhhhhhriiiieeek. And since the landlord owned the houses next to us, those were done at the same time too. Since we had bad thunderstorms come through at night, they also came during the middle of the night and hammered away to try to protect the neighbors' house from water damage. Who reroofs during final exams in a college town?
Plus there's that bad roofing tar odor. It's way too hot for people to have to do such work this time of year.
Stay. It's not your style to check out early.
Hi Beth,
Hope you got some rest. I really didn't have to fight so hard this time, just had to make phone calls when I was too tired & sick, didn't really have the energy to get too upset about it. I was OK, after I made her understand that I needed my treatment at home & wanted to stay with the same specialty pharmacy. It really didn't upset me too much until the insurance co. case manager called me up & said the insurance docs had talked to Dr G (immunologist who dxed me) & said I had to get an appointment with him right away, as he wasn't going to write my orders for IVIG anymore. I then had to explain that my internist had been doing my orders for IVIG (over a year now) & that I no longer saw Dr G. That's when I got worried about those insurance docs. I realized that it had been these doctors who had said "why can't she just go to the hospital for her treatment", who didn't understand that a nurse who brought the IV med with her, could haver had in her trunk for hours (it needs to be refridgerated) or already have it in a pooling bag (no vials or stock numbers or any other check on actual meds in that bag. These same doctors who wanted to know why I couldn't take whatever brand the agency had. And these doctors were now in charge of my file - all because the case managers who signed up this agency in december, gave them a 1 year contract now said the agency "wasn't properly credentialed". so now, to have found out that the only problem is getting the contracts signed, is a relief. I'll miss my nurse, she was really great. But the nursing agency tried to bail on me a couple months ago & now the insurance co. refuses to deal with them (too much actual work involved, I guess, besides the but covering by the case managers). The first time I lost the nursing agency, last december, now that was really scary & difficult. Now i hope for another few months at least wit no worries about getting my treatments.
Also wanted to let you know that I sent a package to your PO Box. It should arrive in 2-3 days. It's not the usual package. Whoever picks it up, should probably open it up (not in public) before taking it on the ferry. It's not illegal or anything, I'm just not sure what kinds of things they ask you to declare (besides fresh produce) when you cross into Canada.
Sharon
I don't know. I just don't know what I would choose. I would like to think I would choose to live, then I imagine pain so bad that it keeps you screaming out in constant pain? That would change things at that time.
I've known emotional pain so severe, that it seems like dying is a better option than dealing with it, but thank goodness, I've never truly acted on it. I've laid in bed crying in pain, and wondered just how in hell, I could put up with it the rest of my life..or if I wanted to. Then the pains pass..both physical and emotional, or they ease up, and I'm glad I made the choice to hang around.
I don't know how you feel. I'm really glad you are trying to give us insight into your world. I agree with what was said above, your life is full of extremes right now. I'm sorry, it's so not fair. It's not fair the cards you have been dealt.
Neils words seemed perfect.
I hope you stick around for a long, long time. I think the world would be a very sad and scary place without EFM in it.
You know, Maggie's right. One little trigger? Nah: Bronze. Bronze at BEST.
The kids have watched the movie Eragon twice in two days now. The closing theme by Avril Lavigne reminds me of EFM, but they're so corny I won't quote them. The song is okay, with a nice tune, but it conflicts quite jarringly with the feel of the movie. But it still reminds me of you.
Praying for less pain, less noise, less stress and more sleep for you.
Zen hugs for you, and Linda, and Plushie,
Neil
Oh no, the postcard was great, I love it! (hey, I listen to slipknot - I'm pretty much un-shockable! haha) :D
Can you maybe see a doctor at the walk-in clinic who can explain these results to you?
Originally the Lyrica was prescribed to me by the medical rehab specialist I was seeing; now I just get it from my GP. In fact, I was first given samples, which helps 'cause it's expensive!
I'm surprised at their attitude, like you were looking for heroin or something!
I have also seen a pain specialist, which didn't take too long to get into see... his name is Dr David Bond; he's at Helmcken and the Old Island Hwy (ie Craigflower). He was very kind, btw.
The breakthrough meds were given to me by my GP, who has just been fabulous, so I'm very grateful to have found her in this town of no doctors who take new patients - and a woman, at that!
Reading your blog and others has inspired me to start my own, even just as a way to work out some of my thoughts... I so appreciate your writing!
Feel free to message me on my newbie-blog, if you'd like more info - I'm happy to share. Hey, I live in Victoria, I'd be thrilled to meet you sometime, too. Hope to see you around. :D
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