I wish I had the ability to write because I have so much I don’t want to forget. I’ve taken quite a nosedive this last month and I’m feeling pretty hopeless and sad. I have many new symptoms and I’m still trying to contend with the old.
Most recently, my jaw has been injured by my apnea oral device. It feels partially dislocated in the mornings and the pain is truly excruciating– from my lower jaw all the way up to my skull above my right temple. Talking is painful, eating is painful. I’m fearful that I will cause permanent damage (or have already). This is in no way trivial. One of the only things I’ve been able to identify that helps my illness is the CPAP and oral device, when I can actually sleep while using them. I’ve tried to go back to the CPAP to give my jaw a break, but it wakes me up incessantly throughout the night and makes me feel worse than if I didn’t sleep at all. Sleep is the key to my healing. There’s nothing that will take me down quicker than lack of sleep or poor sleep and the apnea is no joke. My only option is to wear the CPAP and take a medication to knock me out. This… I don’t know, I can’t even articulate how despairing this makes me feel. I can’t tolerate any drugs. There’s not one I have tried for sleep that doesn’t either cause an allergic reaction or make me feel much worse. Having to deal with the CPAP–the washing every day, the tight strap around my already-injured neck, the rash and acne on my face, the blowing my gut up with air, the endless awakenings–I am so upset about having to go back to this. Plus, trialling sleep meds when my sleep had gotten better! I don’t want to be on more prescriptions and I can’t afford to be. So, because of my jaw, a cascade of pain, energy-depletion and lack of sleep. And I think I might have to see a new doctor about my TMJ, which I need like I need a hole in my head. Or a new jaw injury.
My gut problems have gotten worse, if that was possible. I’m permanently inflamed and don’t digest well, even with HCL and enzymes. I now have to do an enema every other day or so. Another thing for which I have to find time and energy. And the more downhill I go, the more I fear a day in the future when my husband has to help with this. Don’t even read that. It’s too gross and unbearable to think about. The only plus side of this situation is I’m very thankful for the detox help that enemas provide. Much better than being constipated.
Sleep, pain, headaches and exhaustion have been worse this last month. I’ve had no appetite, but have actually gained weight. The muscle pain and stiffness more than anything upsets me. I can’t go back to the pain I had in 2012; it was all-encompassing. It stops me from moving as much, talking as much or being in any way a pleasant person to be around. I can really topple quickly.
I started seeing a pelvic floor physical therapist who helped me more in the first appointment than the fancy GI specialist did with two appointments and two invasive tests. Of course, I’m only allowed twenty-five PT/OT/MT visits per year and I’ve already used twenty-two. And with Medicare, I’ll have zero. The thought of being without my strain-counterstrain PT is very disheartening. I haven’t seen him in a month and I know this is contributing to my worsening pain. He’s $150/hour without insurance.
I kind of scrapped everything I was doing with diet in order to try to fix my gut issues which started on the Autoimmune Protocol (AIP) last year, but nothing has helped. Which, of course, makes me want to consider eliminating foods all over again. Gut isn’t better and I’m going downhill, so maybe the new additions caused it? Or maybe the new probiotics. Or the Florinef. Or the emotional time I’ve had recently. Or the ups and downs of the weather. Or or or…
Almost every single day, I have an awful interaction with someone in the healthcare field. It is brutal and demoralizing. I just hung up in tears after talking to a clinic’s billing person who argued every point I made. Anger wrecks me and people just don’t want to help, so I’m reduced to weeping. I said to her, “Am I asking something out of the norm? You seem very annoyed.” They charge $150 for a half hour phone appointment, $300 for 45 minutes, so what choice do I have than to go in to see doctors and have to deal with insurance and billing?
Yesterday, I was almost in tears because my endocrinologist’s nurse was incredibly rude for the umpteenth time and for no good reason. Because I’m trying to figure out if the doctor can give me info over the phone rather than in person, because I’m trying to figure out how I’m going to get from the office to the lab for a blood draw when it is in a different building on the hospital campus, because I need to research growth hormone stimulation tests before I agree to it, because I didn’t want contrast with my MRI and they made a mistake and put the wrong order in…. These people are in charge of my care, I need them, but they battle every question. Endless phone calls about two things: money and protecting myself.
Well, this has been a cheery post. I kind of hope nobody reads this rant, but I’m going to publish it anyway.
Rag and Bone Shop of the Heart 
PRAYERS FOR YOU— ALL OF US HAVE OUR BURDENS& WITH MOST OF US –IT SEEMS OUR HEALTH PROBLEMS ARE OUR BIGGEST BURDENS!!! AND THE BEST HELP I CAN GIVE TO YOU– IS PRAYERS & NO–I DON’T KNOW YOUR HEALTH PROBLEMS BUT WE ALL DEAL WITH THEM– SOMETIMES OUR HEALTH IS BETTER & SOMETIMES NEXT TO DEATH & PEOPLE DON’T UNDERSTAND THIS– UNLESS THEY HAVE BEEN TOLD — I CAN’T DO ANYTHING MORE FOR YOU– GET READY TO DIE– WHICH I WAS TOLD MANY TIMES BEFORE –WITH MEDICAL DOCTORS– BEFORE I CHOSE ALL NATURAL HEALTH CARE — WHICH HAS WORKED FOR ME– NOT SAYING IT IS AN ANSWER FOR ANYONE OR EVERYONE ELSE! BUT I GOT TIRED OF BEING AN EXPERIMENT & TOLD YOU ARE GOING TO DIE –WE CAN’T DO ANYTHING MORE TO HELP YOU!!!! WE ALL WISH WE COULD REACH OUT TO OTHERS WITH SOOOO MANY HEALTH PROBLEMS–& JUST KNOW I CARE— & I AM PRAYING FOR YOU– FOR ANSWERS & BETTER HEALTH!!! AND BETTER STRENGTH & SPIRIT TO IMPROVE– & ENCOURAGEMENT– GOD HAS THE ANSWERS– I BELIEVE– SO I AM TRUSTING IN HIM— GOD’S WILL BE DONE IN YOUR LIFE!!! & HUGS!!! TOXIC CHEMICAL FREE EASY KIND HUGS!!!! š BLESSINGS TO YOU & YOUR BETTER HEALTH!!!
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Sonda, thank you. You are a tireless supporter in our community and I–and so many others–really appreciate it. One day I’ll take a break from doctors. š
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I read it š you rant away… You should… This sucks!
I’m back at the repeated, negative interactions with medical professionals & their minions. I used to cry, now I swing between a red mist and the beginning of frustrated tears. I actually became terse on the phone with a doctors receptionist today after she was ‘off’ to me… This is not really me! I’m just so fed up. I could tell she was surprised/shocked haha.
I really, truly understand how bl**dy demoralising, frustrating, anger and despair inducing this aspect is. If this one aspect was better, then at least we’d feel we had people fighting our corner, on our side.. Not that we were constantly railing against some vast machine! It’s so difficult to advocate and administrate for yourself when you are so ill and so many different things are wrong – like a tangled ball of wool that one is trying desperately to unpick.
I am thinking of you, and sending a hug.
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Vicky, ha, thank you š I’ve just reached my limit lately with people’s immediate reactions being defensiveness and blame. I really try to see situations objectively and accept responsibility for the parts I play, but no one seems to want to soften and see the other side. Maybe it’s a liability thing. I’m just trying to be human, but I’m dealing with a massive money-making machine that feeds off the sick and weak.
Re people on our side, that’s what I said to my doctor recently after a particularly bad experience that I tried to professionally address to no avail: “If you only have your staff’s back and don’t have my back, I don’t feel comfortable here.”
Hug right back at you, Vicky. I’m fighting in your corner as much as I can muster.
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Thanks for sharing your innermost thoughts. ā¤ I've been crying all month… I just can't take it anymore. You're not alone. Every moment I try to distract myself from the unbearable pain of existing. Sigh… that's depressing. Hopefully if I keep distracting myself eventually the tides will turn. I don't know what else to do. I listened to this podcast (http://drruscio.com/chris-kresser-dark-side-healthy-episode-16/) with Chris Kresser recently, which lead me to this post: http://chriskresser.com/tribute-to-darlene-cohen-finding-joy-in-the-heart-of-pain/. It gave me some comfort. Think I'm gonna order that book.
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Lara, thank you for the honest comment. I vacillate between wanting to share all the horrors and feeling embarrassed/guilty/vulnerable by opening myself up. Thank you, also, for the links, I will check them out (although “finding joy in the heart of pain” causes me a knee-jerk eye roll in this cynical lady š But I’ll take comfort anywhere I can get it). I hope you feel better.
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Haha I hear yah! Luckily I didn’t get that sense from the post… we’ll see how the book is though. š
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I’m sorry you’ve had to go through this. Like being chronically ill is not difficult enough without all the nonsense from medical staff? I find some of the people who work on the phones to be very difficult to deal with. Maybe you could try doing the elimination diet again? I don’t know but, for me, when I get my diet right everything else is so much easier. I know how difficult this can be for you. Hang in there, sometimes we just need to find what works. I’ve just started a new probiotic also; it’s gluten and dairy free so I’m hoping it’s going to help. I hope you feel better soon š
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Miche, long time no talk to! I’m so tired of diet tests. I find it so demoralising. I have a bad habit of thinking, “Everything else has been taken away, I’m not going to lose [insert not healthy food], too!” I started a really expensive new probiotic about a month ago — GutPro, supposedly all low-histamine species. But, as usual, nothing good or bad is discernible.
I haven’t caught up on your blog in a while. I hope you are doing well. Thank you for the support. ā¤
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I know, I’ve been feeling cut of from humanity and didn’t want to talk to people on the internet because it felt like a parody of the real thing. However, I miss people!
Losing foods is horrid because, ultimately they do make us happy. The more I lose the more I appreciate the most bland and simple foods. Even just mashed pumpkin topped with avocado makes me happy! I miss all the chocolate and sweet naughty food so much. Your GutPro should help; I’ve heard that’s a good one. Don’t worry, I’ll be back to visit soon, and I can’t wait to see you some time over at The Labyrinth and finding my way out!
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Oh, hon. We’ve both been in a terrible state this month. I have to believe that part of it has to be the smoke. It’s one of my worst triggers, and it was AWFUL for a while, but it still isn’t gone.
I’m so sorry you can’t tolerate chromolyn or ketofiphen. Or any of the other medications that I am merciffully able to take to at least decrease my symptoms.
The fact that it costs you so much to go to the doctor is appalling. I firmly believe that in a modern society, medical care should be a given. It still boggles my mind how much Americans rail against ‘socialized medicine’. I still have to speak with dumb doctors, and egocentric mdieties, but at least I don’t get a bill.
The last two days I’ve been feeling much better- turns out one of my new meds worked very well- well enough that it covered up the symptoms it was causing… Damn mast cells!!!!
I’m sending you good mast cell mojo so that you can feel better!
Karen
PS. Never feel bad about needing some TLC. This illness is brutal.
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Karen, sorry you’re in a terrible state, too. I don’t want to give credit to the silly superstitions, but I do regret saying I was a bit better than last year because… BAM.
I haven’t tried Ketotifen. It’s still on my short list. The healthcare system here is twisted and dark, but I am choosing my doctors and I don’t remember if I had specialist choices when I was in Ireland. Although, I sure do remember being taken off in an ambulance and staying overnight in the hospital and receiving no bill! It’s how it should be. I can’t even think about the insults added to the injuries of illness in this country. Not sure how anyone keeps houses, credit etc. after becoming seriously ill.
Hope you are continuing to have good-ish days, my friend. X
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I know the hopeless place you are in. I’ve been there. I took a two year break because of it, tried to survive on my own, (I say survive because I surely wasn’t living). Just a quick note to let ya know you’re not alone. I’ve gone through this as well, I just started back to doctoring again. I haven’t read a lot of your recent posts, because I even gave up on reading, it took too much energy. I’ve got one thing pushing me now, anger, this anger in me is pushing me to keep going (anger at my body, health, people..everything)
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Whitedolphin, I actually tried tracking you down not long ago to see how you were doing, but I couldn’t find contact info. I’m so glad you commented, I’ve missed you. How are you?? Is your new doctor still a long drive away? How’s your dog? boyfriend? (not in that order, necessarily…)
I prefer anger to despair. It’s more productive for me. Sorry you’re still struggling, I was hoping you’d made positive strides. X
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It’s been extremely record breaking heat here as you know, so your body may not be functioning as well trying to maintain homeostasis. I live just south of you in Lake Taps. I was wondering how you were doing in this heat. I realized that I would die in ninety degree weather and high humidity. Actually I had a slight remission when the humidity decrease to 15% one day with normal energy and symptom disappearance. What a difference it was not to be concern about my energy envelope. I experience normality! But then 3 days later our current weather system hit and I collapse like I was sucker punch. It was instant. The wind came up, the temperature dropped by 15 degrees, the humidty rose significantly and I was on the floor. So I was wondering if mycotoxin or mold spores blew in or whether my body (ANS/CNS) at the hot temperature and low humidity had enough energy to concentrate on other functions and generate energy. It was like a krebs cycle sort of experience. I am going to explore this more.
The Pacific Northwest has the highest incidence of MS than anywhere else in the world which is interesting.
In reference with your sleep cycle, there seems to be a circadian rhythym reversal with ME/CFS. I stopped fighting it with cpap machines and sleep meds. I said OK if my body won’t allow me to sleep at night then I’ll just stay awake at night and sleep during the day as if I was working night shift.
I’m sure you are aware of Ken Lassesen’s blog
https://cfsremission.wordpress.com/2014/05/20/probiotics-and-histamines/
I would find your worse symptom and focus on that, then to play whac-o-mole. Otherwise attempting to alleviate a bunch of symptoms may make you worse with various modalities. You will know whether treatment alleviates a condition without increasing other symptoms.
I ran into this person’s blog which I found interesting
http://cfsmethylation.blogspot.com/2014_05_01_archive.html
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It’s exhausting being cheery and positive all the time, accept the slumps. Prioritise the battles and leave the others for someone else or another day. Maybe you could email instead of telephoning if that’s possible and easier for you? Lot less emotional! Go steady. š
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[…] because the CPAP keeps me awake all night and the oral appliance causes terrible jaw pain and TMJ issues. But, I know I feel better when I can manage to sleep while wearing one of them, so there’s […]
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