Other Stuff? A Question For You All

As I mentioned earlier, because of several different issues, the doctor said I am not eligible to even be referred for consideration to the San Diego specialty docs who do this surgery for the CTEPH that could save my life. They have referred a patient before. That’s good news. They basically said I’m not stable enough, and that they have to get me stable first. I have fluid overload still, have to get the fluid down, and I need to lose weight (which is increasingly hard to do when I can’t exercise at all), and the left-sided (which is rare in this case) heart failure has to be controlled completely, and a few other little things that have to be taken care of, before they’ll even evaluate me to see if I would benefit from the surgery.

FLUID RESTRICTION SUCKS

So I have to really suck this up, ya’ll. I have to restrict my fluids to 1 &  1/2 liters total per day… that’s tough. It’s not much. I mean, think about it: how many sodas, cups of coffee, glasses of water, sips of tea, bowls of soup, juice, or pieces of juicy fruit do you eat/drink per day? Well, that means I can only have four cans of soda worth of fluids every day. Four cans of soda, that’s it. For the entire day.

But to make it so much more fun, they upped my Lasix (that’s a diuretic that flushes fluids out of your body while making you pee like a racehorse). I’m now taking 100mg, twice per day, but at the same time, I’m restricted to four cans of soda worth of fluid per day. Seriously… that’s not a lot of drink, yanno?

That means soups are kinda gonna be out of the question too.

Does it really suck that the life threatening illness doesn’t bum me out as much as being told I have to restrict my fluids to 1 & 1/2 liters per day?

I’m more bummed about that than hearing I’m not eligible for the surgery.

Crazy.

But I’m not in denial.

I just love my ice water.

Sigh.

PAIN SUCKS & MOST DOCS DON’T CARE

I paid almost $200 for the pleasure of one doctor telling me there was nothing wrong with me that was in his specialty and that he was discharging me from his service. He said the rash on my hands, that started to come up again as the prednisone was decreased, didn’t look like DM to him–he gave me a name for it. I went and looked it up and looked at hundreds of pictures of what he called it and it looks absolutely NOTHING like what he said it was. Then I pulled up hundreds of pics of the DM rashes and my rash looks just like that. I’m so pissed I can’t even see straight over this.

You know, the medical profession is the only one where, if you’re unhappy with the service, too damned bad. I mean, if you buy a product that doesn’t work, you can return it and get your money back. You get services you don’t like that aren’t any good, you can request your money back or take them to court. With medical services, the only way you can take them to court is if they flat-out do something wrong that causes you harm. Just getting bad service doesn’t mean squat. You’re still out the money. They still got the money. And they don’t have to get better and sadly you don’t get better either.

It’s also the only profession in which ‘curing’ the problem is not in the service provider’s best interest. I mean, if you fix a car, you know the car will eventually break down again, so the mechanic has a job security. But with a doctor, if he fixes you in the first visit, there’s no reason to come back, right? So, they see you for one visit, order plenty of tests, and then order a follow up visit. Every time. And some docs get paid extra for the more tests they can make you get. Seriously, it’s called corporate doctors.

The PA I had before I moved to UTMB actually worked for a corporate doctor who had to lay people off because the clinic, while making money, wasn’t referring enough people for their specialized services–which were hoaky medicine anyway. This clinic was getting into heavy metal detoxing and thermography and stuff that, while there is some science to it, was not all approved or good science yet, and I personally can’t afford to pay for being a guinea pig.

Anyway, you’re guaranteed two visits and tests for anything other than minor issue. And if the tests show anything, then you can expect more than that. Well, this doctor discharged me from his service. I apparently, even though all my symptoms show I do, don’t have something wrong with me that he says his specialty covers.

He referred me to a neurologist and a dermatologist. Prior to that, I was referred to a rheumatologist, and now I currently see an endocronologist, pulmonologist and cardiologist. And today, I will also see a gynocologist. That’s a lot of ologists.

My primary care doctor is just an internist. I wonder why she doesn’t get to be an olog. Poor thing.

I’m so tired of doctors.

WHY SO MANY DOCS?

Okay, so some of you are probably wondering why I’m still doing the doctor shuffle. After all, isn’t a terminal illness expected to end in my death pretty much the last word on things? Well, yeah, sort of. But see, I may still live for a year or two of a million more, and in the meantime, I still have this pesky pain condition that no one has managed to figure out, you know, the one I had before the pulmonary emoblisms hit and the acute stuff, like saving my life, too front and center.

And now that I’m more stable on the acute stuff, it’s like this other stuff has come back, but with a vengeance. It’s knocked me flat on my arse end a few times recently, and I almost mean that literally. I am so stiff and in such pain some days that I can’t move, and I’m so tired–no, not sleepy. I’m exhausted, like my body literally has no more energy left in it to DO anything.

I can handle the exhaustion, but the pain is unreal, and I’m also dangerously close to being out of pain pills that my first doctor gave me, and I’ve managed to refill them a few times, but now, this is the last bottle. That means, in about a month, maybe a month 1/2, I’ll have no more pain pills, and no way to get more–since the docs at UTMB seem to think there’s nothing wrong with me. I can’t see the neurologist until January. My pills won’t last until then. No one else will give me any. From the point I run out until I can get more or figure out what this is, I’m likely not going to be functional–at all. I dread those days.

DRUG SEEKING BEHAVIOR

It’s sad, in a way, that the doctors are making me act like an addict, when I’m not. They don’t really even see how they do this, but they do. My PA prescribed me pills in such a way that I could take up to five Lortab 10s in one day, and then she gave me 120 of them at a time. This prescription lasted me three to six months, depending on the pain levels. But she made it where I could refill it every 30 days. So I did–and then would just pour the empty bottle into the bigger bottle. That way, she said, I could be sure if I couldn’t get in or if insurance wouldn’t pay or something, I’d have plenty to tide me over until the next time I could get in, etc. Was a great plan–and it left me in good stead for when I had to change docs (she does only urgent care now, so I can’t go to her any more).

The new docs, they won’t give me pain meds for anything unless it’s acute pain–like from an injury or something. Even when the abscess left a hole in my leg an inch deep, I had to beg for a pain pill, even in the hospital. They want anything other than ‘acute pain’ to go through pain management. Fine, but pain management won’t let me come see them until there is a full MRI of my spine on record. Well, I’m really not needing the pain medication for my spine (for the scoliosis and disc disease), but that doesn’t matter to them. I can’t afford an MRI for my full spine right now, and if I could, the money needs to go for the VQ nuclear scan instead. So… no pain management for me.

So now, when I rarely think about the pain pills unless I’m actually currently in pain, after three years of having a doctor who trusted me and knew I rarely took the pills unless I needed them and gave me larger prescriptions ’cause they are so much cheaper that way, I find I’m in a fix now where the opposite is true, and I’m sitting here every day worrying about getting pain pills, wondering how I’m going to get pain pills, afraid to go without pain pills, thinking or nefarious ways to get pain pills.

It sucks. it should NOT be this way.

Then, to make matters worse, the rheumatologist treated me like I was coming to him trying to get steroids. Dude, I have adrenal insufficiency. I can get steroids any time I want them, without even batting an eye. He said, “I can’t, in good conscience, prescribe steroids or increase your dosage when you….”

I cried during my appointment with him. I told him, “I don’t want steroids. I want to know why I’m hurting and to make it stop.”

He said he understood.

He doesn’t.

The only thing that man understands is how to read a lab report, and if anything beyond that lab report is necessary, then too bad.

What the hell do we need doctors for nowadays anyway? Where are the doctors who sit and look at your symptoms and do a differential diagnosis? I mean, at this point, we only really need computerized kiosks: input symptoms, take pictures of things visible, input pictures, have the computer run through the database, match to the most likely causes, order labwork, computer reads labwork, computer dispenses medication.

What the hell we need doctors for? Oh, I know–to keep us honest, so we don’t lie to the computer about our symptoms to get contraband steroids or something, right?

Well, that and surgeries, I guess. We sure don’t need them for diagnosis things, ’cause that’s not working for me.

Sigh. I’m so tired of all this. So so so tired.

A QUALIFIER BEFORE THE QUESTION

Now, that brings me to the question I wanted to ask you all, and maybe some of you can help me. I have been diagnosed with a terminal disease. Right now, they are telling me that there is no cure for it and that treatment really focuses on prolonging life as long as possible–with the BEST mean life expectancy showing about 6.5 years in the latest Japanese study and about 3.75 years in most older American studies–but it doesn’t really prevent anything or improve much of anything. It just makes me feel better while I slowly die. That is not the life I want for myself. In the meantime, I’ve got this other stuff that’s making what life I have left miserable.

I am not in denial. I really am not. BUT at the same time, I believe in miracles. I believe there are things we don’t know, can’t know, don’t understand, can’t understand. I believe there are reasons and designs and purposes for everything. So in that vein, I meditate, and I do EFT, and I do guided visualization. I accept, lovingly and with gratitude, prayer and Reiki and positive energy and love from everyone around me willing to send it. I live in the positive as much as possible. I go to my doctor’s appointments and do what they tell me to do. I eat as close to an all-natural diet as possible, understanding that food is medicine (or poison, depending on how you look at it and how you eat it). I believe in certain supplements and herbs and spices having profound effects on health.

What I don’t believe, not for one moment, is that any supplement on the market is going to cure me, heal me, or truly significantly make me feel any better. I know someone always knows someone who knows someone or they even think that some product they’ve purchased has been a cure-all potion. But I don’t buy it for one minute, and especially if these companies are MLM (Multi-level marketing for those who don’t know the lingo) and I don’t have the spare money to try it anyway.

So that said, please keep in mind with what I am about to ask, I do not want anyone to offer me a product that is manufactured and sold by distributors, MLM companies, or the like. Additionally, and this is really the most important–because I know that some of you will tell me to try your product that you just know will work for me, and it might really have worked for you–these supplements, herbs, spice extracts and such, have things in them that interact with my medications–of which I take plenty–and it’s not a chance I am willing to take. Think about it, Are you truly willing to stake MY LIFE on the chance that your product that you love won’t interfere with my heart medications that keep me alive? Okay, then you get where I’m at with this, right?

I hope so–I don’t mean to offend anyone, but want to make it clear, these supplements can be very dangerous for someone with heart failure and on the medications I am on. I can’t even use the Salon Pas pain patches, because they have aspirin equivalent in them–and that interacts with my aspirin regimen, and the coumadin I take. So even seemingly innocuous stuff can be dangerous. I can’t even have have too much spinach or other leafy greens (which I love), because it reduces my PT/INR. I can’t have sodium. I can’t have sodium substitutes, ’cause they still are really sodium, and I can’t have grapefruit. I can’t have ibuprofen or NSAIDs, and the list keeps going. So when I can’t have any of these apparently innocuous substances, it makes sense I can’t try a supplement that may or may not have declared ingredients in it.

NOW THE QUESTION

Now, all that said: I’m looking for alternative health options. I meditate. I do stretching similar to yoga, but that protects my back and doesn’t knock the wind out of me. I do massage therapy. I’m already considering acupuncture. If anyone has any experience of advice with acupuncture, like how to pick someone who really knows their stuff, so I don’t get swindled–money is so tight right now, and this isn’t something I can get any assistance with, so I need to know that I’m getting a good therapist. I do aroma therapy. I’m studying various forms of energy healing and more. I know it’s a long-shot. I know some of you might think I’m silly. But I have to be DOING something. I have to DO something.

It’s not about not being willing to accept–it’s about not being ready to give in or give up yet, and I’m willing to try almost anything that isn’t likely to cause more damage.

So tell me, what am I missing?

What else is there? What other things can I try or consider for my health?

Any ideas are welcome–no matter how crazy it sounds–it’s worth at least considering. Right?

Or am I truly in denial here?

And in the meantime, if anyone knows someone who does diagnostic work, someone who works with hard to diagnose cases, or with those who are hard to treat because of comorbidities, please tell me about that doctor too. AT this point, I’m willing to go anywhere. I don’t know how we’ll afford it, but we’ll find a way.

Share the blog, let people who might know come forward and holler at me–leave a comment here, and if you don’t want it to go public, say so in the comment and leave me your email and I’ll emal back.

For now, I’m going to go take a shower and start my day.

Love you all,

Michy

 

Related Posts Plugin for WordPress, Blogger...

Comments

comments

5 comments to Other Stuff? A Question For You All

  • Raiscara Avalon  says:

    Wow Michy, just wow. Have you tried a DO instead of an MD? I don’t even know if you have them there, but I know we do here. They tend to look at the whole picture more often. They’re also more likely to look at alternative therapies rather than throwing more meds at the issue.

    I can think of a bunch of herbs, spices and vitamins/minerals that may help, but I’m not up on all the latest interactions. I’ve been out of the herbalist sphere for a few years now. Some ideas are, cinnamon for weight loss, magnesium for nerve pain/headaches/etc (it’s also one of the most critical minerals), Vitamin D – again critical. Peppermint is good for pain, either topical or internal…can throw some tea bags in a warm bath instead of going with EO. I know there are lots for heart health, blood issues, pain, energy, rashes and for fluid retention, but my brain isn’t working right now. 🙂

    Wish you all the best Michy! *hugs and healing thoughts*

    • Michy Devon  says:

      My current doc, my primary care, is a DO internist, so yes, she’s good for that–and she listens, which actually helps a lot, but she’s limited a lot to having to refer me to specialists. She helps determine who and gets me in faster than if I don’t get referred and she’s good at giving me advice on things to do to manage in the meantime.

      As for herbs and stuff, I’m doing a lot of research on those myself right now, to go along with my all-natural diet. Cinnamon is good for keeping blood glucose steady and helps prevent an abundance of insulin when it’s not needed, which can lead to weight gain–so you’re right in a way about cinnamon–it actually doesn’t help with weight loss exactly but it absolutely can help someone with too much insulin or insulin reactions (even without diabetes, some folks can have too much insulin hanging around), and that causes weight gain–so it can help maintain a healthy weight, if that’s a problem.

      Peppermint is with me always. I have peppermint leaves I chew on, peppermint teas I drink (aids with digestion and calms my queasy belly) and peppermint essential oil. I can be near puking and peppermint will stop it, instantly, and it smells soooo good. I rub the oil on my chest, my tummy, and put it on my oxygen cannula so I can sniff it. Love, love, love the stuff.

      Magnesium, potassium, and vitamin D are all prescribed by my doc, because with the Lasix, I’m low on all of these, all the time. My legs will hurt so bad when my magnesium and potassium get low and my entire body hurts when vitamin D does–so I take prescribed pills for those things–so you’re dead on with that.

      The one that keeps coming up for me over and over again is curcumin, or turmeric. I’ve been adding it to everything I cook. It’s a great tasting spice and it’s supposed to do so much good for you, including pain relief and inflammation control. I’ve got some gel capsules, empty ones, and as soon as I get my heartburn meds again, I’m going to make some turmeric capsules–even Dr.Oz and Dr. Mercola both have sworn by turmeric.

      So yes, so far, I’m with you on all those. I don’t mind researching interactions myself, since I know my meds and ya’ll don’t–so if you think of other things I might not know, holler–I’ll look for them and see.

      My biggies right now are pain relief, joint popping and pain, headaches, concentration, memory and inflammation. Anything all-natural and herbal (single ingredient–I’ll make my own ‘pills’ and stuff myself from organic sources, not a product I buy over the counter anywhere)… so if you know of something you think will help, keep me in mind!

      (HUGS) back at ya!

  • Angela Young  says:

    I’m with you on doctors!!!! I do reflexology. You can get a book (or look online) and do it yourself. It’s like accupuncture but with pressure on parts of hand/feet/face. It helps me a lot, even if it just calms me.

    Have you thought of setting up an account with paypal so people could donate toward your medical expenses if they wanted to? I have a friend who has done that. When she has enough for whatever current need, she takes the donate box off until she has another need. I know people would love to help you out.

    Other than that, I am praying for you. Angie

    • Michy Devon  says:

      You know, I use reflexology some–don’t know why I didn’t think to look more in depth with it, so thank you for the reminder!

      I have thought about taking donations, but that’s sort of not my style for these ‘ordinary’ expenses for me. If, at some point, they do change my status on the CTEPH surgery to eligible, I will be doing major fundraisers for that surgery though–it runs about a million bucks, start to finish, and even the percentage I’ll have to pay once Medicare kicks in (six long, long months from now), will be considerable, plus Medicare won’t pay for the travel expenses, food, lodgings for family while there and for me during the time I’m not in the hospital, etc. So yeah, when I need it, that’s exactly what I’ll do.

      In the meantime, I’m hoping folks will just keep buying or start buying my books–it keeps me fed and they get something (good I hope) out of it!

      (HUGS) Thank you so much for the prayers…

  • Kathy  says:

    You’re not in denial. In fact, you probably see things more clearly than most people I know. The fact that you recognize the power in positive energy already puts you a step ahead of the game. I don’t have any alternative healing ideas for you, but you always have my positive thoughts and friendship, which is pretty much everything I have to give at this point.

Leave a reply

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>