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Aspiring Nermalcy

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89 and 127.

82 and 140.

90 and 101.

And then there’s these: 96.3, 97.6, 100.3, 97.8, 96.8, 96.9.

And then there’s these too: 123/74, 116/83, 109/72, 147/96.

BAD AT MATH

Now, I’ve never been good at math, ever.  In fact, I failed college algebra three times. The only reason I ever passed was when I went to the professor when I had received a 68 for the class (a failing grade by 2 points, if I’m doing the math correctly), and I asked him if there was any way I could do anything to get a passing grade. He asked me, “What’s your major?” I said it was psychology, and he gave me the two points and basically said not to ever show up in one of his classes again. Nice man.

So somewhere in my life, I did end up going into accounting. I argue that accounting isn’t math; it’s money. I like money. I don’t do math.

And yet, those numbers up there, numbers… they have a meaning. And I feel like a mathematician trying to figure them all out. Do you know what they are? Those are numbers that are used to determine how well I am doing health wise. There’s a lot of math in medicine, it seems. A lot of math in health.

WHAT DO THEY MEAN?

Let’s see, the first set of numbers is my pulse ox and my pulse rate. The 89 & 127 is what my numbers were right after I tried to brush my own hair. The 82 & 140 is what they were when I stood up and walked 22 steps into the bathroom and then sat down… yes, on the toilet. I’ve fallen asleep on the toilet the past few days more times than I can count. I’m not sure why that is happening. I hit the toilet, lean against the wall, and next thing I know my family is calling to me asking if I’m okay. I jerk awake and wonder what happened and where I am. It’s strange. It’s the only real sleep I’ve been getting until today though. The 90 and 101 is what I was at the beginning of typing this blog post, just sitting here, doing nothing but drinking a PowerAde Zero. Have you ever had the strawberry one? I really like them.

The next set of numbers are my temperature readings. My metabolism was effectively shut down, hypothyroid and other problems, so my temperatures have been as low as 95 before. Fortunately, we’re staying in the upper 97s and lower 98s now, and slowly trying to get the temps back up to a more normal level. Still, I never tend to go over 96.9 in the morning, and that’s the part we’re trying to change. So I take my temperature four times per day, when I take my medication, and log it on a spreadsheet so the docs can look at trends, averages and such, and compare that to medication and symptoms and such.

The last set of numbers are blood pressure readings. My BP used to always be good, but it’s changed recently. Now, it goes super high or super low, depending on what I’m doing. Most people’s blood pressure stays pretty level, regardless of activity, but mine likes to jump all up and down and all over. But since the cardiologist took me off the Bystolic–a drug that was apparently doing a lot of damage to me that we never knew–and now my BP is actually stabilizing some. I’m still taking one blood pressure medication, but as we wean back down off the steroids, I think I’ll be able to come off that too.

FOREIGN LANGUAGES

But it’s not just math that my health problems are teaching me. I’m learning Latin and other foreign languages too. For example, polymyositis and dermatomyositis – poly = many. sitis = inflammation. derma = skin. See, I’m getting it. Hypo means low and hyper means high. It’s easy. Lordosis. Kyphosis. Scoliosis. Acute. Schmorl’s nodes.

Then there’s the drugs names. Let’s see, here’s my drug list:

  • Prednisone – 4 times daily
  • Promethazine
  • Lisinopril – twice daily
  • Gabapentin – three pills, four times daily
  • Vicoprofen
  • Levothyroxine
  • Liothyronine – 4 times daily
  • Potassium –
  • Vitamin C – two pills daily
  • Sublingual Vitamin B Compex – four droppers daily
  • Metanx – two pills daily
  • Singulair
  • Veramyst
  • Doxycycline – four daily
  • Calcium & Magnesium Citrate – three daily
  • Fludricortisone / Florinef
  • Cyclobenzapar / Flexiril – up to four daily

So I take anywhere from 20-40 pills, droppers, nose sprays per day. That’s a lot of pills. And it doesn’t count those that I take once in a while for things that aren’t permanent. I’m about to have to start taking some iron too, because it appears my iron is low, but we’re waiting to see what type of iron I’ll be taking.

The nutritional supplements are important, because I was malnourished, with the metabolism shutting down on me. I wasn’t getting any nutrition from my foods. I also wasn’t getting any benefit from my medication, because I couldn’t metabolize that either. That’s why a lot of the meds now are being taken sublingually (under the tongue and dissolved or absorbed, then swallowed). For example, the cytomel, the liothyronine, is taken sublinguially, as is the vitamin B. These two are taken first, before I do any other meds, and that allows my metabolism to work, and then I take the other pills, so that the cytomel lets the meds get metabolized.

It’s a delicate balance. Sometimes it doesn’t work.

MY SON IS NOT NORMAL

Last night, I wasn’t feeling well, again, and I spent the night in bed, playing around on the computer in between napping. I could barely keep my eyes open at points, but my son came into the room and he wanted some mommy time. When I don’t feel good, which is becoming more frequent, I don’t spend as much time with my son as I should. So he came in and sat with me on the bed, and we spent the night looking at gadgets on the Hammacher Schlemmer. Don’t go to that link unless you want to get stuck there for hours.

While we windowshopped, we talked. At one point, he said he wanted to be normal. I told him I didn’t want him to be normal. I wanted him to be nermal. You know, near normal. Who wants to be normal?

I WANT TO BE NORMAL

I do. I want to be normal. At least, where my health is concerned. I’m so tired of waking up in the morning and the first thing I have to do is take my temperature and then take my meds. Then log things. Then I wait so I can even get out of bed. I’m hooked up to oxygen 24/7. I’m confined to the house almost exclusively, and recently, been confined to the chair or the bed. My back aches from not being able to move much at all. I can’t breathe. Eating is complicated. Swallowing is difficult. There’s a lot of pain.

I would give a lot right now to be normal.

PULMONARY ARTERIAL HYPERTENSION – PAH

I don’t think I’ve ever heard of this before the doctor told me I had it. Then a friend on facebook sent me a link to a site about it. From there, I found this great link to pre-existing condition insurance through the State of Texas. I applied. It looks like I qualify. So I’m very happy about that. But what I’m not happy about is the diagnosis. It’s scary.

I’m only 40 years old. I don’t want to die. I’m not anywhere near ready to die. I plan to live forever. But I don’t want the rest of my life to be like this, not even able to get up from a chair, to walk to the bathroom, to cook a meal for myself, to even brush my hair.

ABNERMAL ME

You know, I don’t really want to be normal. I just want to be able to me again. I’ve never been normal. Ever. I never intend to be. But I have hopes and dreams. I have plans. I have family and friends and love and a life that I want to live. I’m not living right now. What the hell is going on with me? I mean, first they can’t find out what is wrong. No one will give me a diagnosis. Then, suddenly, I have multiple diagnoses. Addison’s Disease. Hashimoto’s Thyroiditis. Dermatomyositis. PGA-Type II. Congestive Heart Failure. Pulmonary Arterial Hypertension. Each one is more rare and unusual than the other… how? Why? Doesn’t that seem a little odd?

We have to be missing something here… there has to be something else going on here.

I was sitting around yesterday and almost laughing. I was saying, “Nah, I’m not worried. Things like this don’t happen to me…”

The room got quiet. Then I snorkled. Yes, snorkled is a Michy-ism. I snorkled and realized, “Huh, for the past five years, things like this have absolutely been happening to me.” I guess it’s all a matter of how you take it, right?

I DON’T WANT TO DIE

That’s what it really comes down to right there: I don’t want to die. My son hugs me all the time. My daughter looks at me with these sad eyes. Lynn cries sometimes when she looks at me, and other times, she’s tough and gets angry for me. Ryan won’t talk to me much about health stuff at all. And before my sister left from her visit last week, she cried and told me I’d better not die on her.

I think these things show me that things are probably looking worse than I want to admit they are. I sit here, I breathe in, I breathe out, sometimes not so easily right now, and as long as I don’t move, think, or try to do anything, I am normal. Or maybe nermal. For brief moments, I am nermal. Then I blink, breathe, eat, cough, move, or do anything, and am reminded that I am not. Not normal. Not even nermal. Not even nermal for me.

I’m only 40 years old. I have a teen aged son and a young adult daughter who still need their mommy. I have a dog who would be lost without me (so I’ve convinced myself, but it’s really me who would be lost without him.) I am not on the best selling author’s list anywhere yet. Hell, haven’t even sold a book to a major publisher yet, only small presses. I haven’t been to New Zealand, Spain, France or Greece. I have a cruise planned in November I want to go on, and I’d like to be able to breathe or move while I’m there. I want to get up and go to the bathroom without passing out. I want to eat what I want, when I want. I want to write again… I want to live again.

Most people are living to die… I am dying to live. I finally have all the things I want and need in life to be successful, to go where I want to go, to help the people I want to help. It seems so cruel that my ability to do these things is now taken from me.

Negative? No. I’m trying to stay as positive as I can, but the truth is, it’s tough right now. I’m scared. I’m tired. And I don’t know where to go with this. That’s the big one right there. It’s not like with cancer, where I have a gameplan: fight and win, fight and lose. I don’t even know what I’m fighting for, how to fight, and I don’t know what winning means. It doesn’t mean remission. It doesn’t mean health. What does it mean?

I just don’t know.

And it’s the not knowing that makes this so very, very difficult.

Until then, I’ll keep doing math… signing off at: 95 and 98, 98.3, and I’m too lazy to do the rest.

Love and stuff,
Michy

 

 

When you can’t find no one to blame, you just blame yourself. And I know I’ll never be the same. I just got back from hell.

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6 Responses to “Aspiring Nermalcy”

  1. Beth says:

    I think it’s (way past) time for your doc (one of them, any of them) to check you into the hospital and keep you there for a while. You have a lot of stuff going on and each thing surely must complicate the others. You’re on a zillion meds–and each of them surely must have an impact on the others, too.

    Hospitals suck and they are expensive. For the kind of money that they want for a bed and three crappy meals, you could get five star treatment at an Oprah-worthy hotel and have a hot guy named Sven at your beck and call. But I really think that it’s time. You deserve to be healthy and you need a workable plan to get there. You deserve a better quality of life, and you deserve to be nermal.

    Just please don’t let them take you all the way to normal, because that would make me sad. ;O)

  2. admin says:

    Beth, I have a new internal medicine doctor I’m meeting with on the 31st, I think… she is highly recommended and her specialty is chronic disease management. The problem I’ve had at this point is that I’ve got a PA primary care, a cardiologist, an endocronologist, soon to be a pulmonologist, and a rheumatologist. They want me to see a neurologist at some point too. All these ologists. I’m glad I’m not an ologist.

    Anyway, her job, then, would be to coordinate my care between all the doctors. She would get all the reports, see all their treatments, monitor all their meds. For example, my primary care doctor put me on Bystolic. My endocronologist says that blocks T3 absorption and/or conversion, so I am not getting any T3 conversion for my thyroid for the T4. So primary care doc orders cytomel, a synthetic T3, to go with the T4, and I end up hyperthyroid instead of hypothyroid. Then the cardiologist says Bystolic slows metabolism, which I already had slowed, and that it causes weight gain too, so he took me off it completely. Well, now my BP is stable, but my pulse is high… I should have gone off Bystolic a year ago – that stuff was awful, and had any ONE doctor been coordinating my care, that wouldn’t have happened.

    So this new doctor is going to coordinate the care between the specialists. She has hospital privileges at UTMB, a teaching hospital here, and my primary care doc doesn’t. In fact, none of my docs were in a position to admit me and institute a treatment plan. They all have privileges, but no one can actually DO what needs to be done. This doctor I’m seeing should be able to do that, from what we’ve been told. I really am looking forward to meeting her. Her reviews online have been spectacular.

    The PLAN we have is to meet with her, go over the entire history, get all the labs and reports to her from the specialists (I’m making a book of my history for her, with all the lab results, a spreadsheet, etc.), and then, when the PCIP insurance I have applied for kicks in (should be September 15th), we plan to have her admit me to the hospital for however long it takes to get all this straightened out.

    She’s on with the gameplan, it’s just waiting now. If the PCIP insurance comes through, they’ll pay 80/20 to my deductible, which is only $1000 bucks… so the difference in the hospital stay price would be considerable.

    That’s why I keep sitting here with my family saying, “One more month… I just need to make it one more month….”

    We know hospitalization is the answer. It’s going to be the only way we’re able to get this all figured out and meds titrated. Lab results are more immediate, care is more immediate, and if there are interactions and problems and such, that’s immediate too.

    Truth is, I welcome the hospital. I’m scared right now. Really scared, right now. And it’s showing for my family too. They usually turn to me to be upbeat and strong about this stuff, and when I’m the one crying over it, they are a little unstable right now too.

    But I have dreams of laying in a hospital bed, my head propped up, pillows, against the bed, and I feel ‘safe’ there in the dream. I know the dream is telling me that’s where I need to be. I just really, really need this insurance to kick in. 20% of several thousand or even hundreds of thousands of dollars is much cheaper than 100% of it. I have to just push through this. I’ve made it this far – I’ll make it another month!

  3. Beth says:

    Good! And yes, you can definitely hang tough for another month. ♥

  4. So happy one doc will be managing the others- that is definitely what you need! One thing my doc told me was not to take vitamins within an hour of my prescription meds because they can block your absorbtion of the medications. Maybe you need to try that?

    I hate that you are going through this and can’t wait for that insurance to kick in so you can go in the hospital and get taken care of.

    you are too young too die and too loved and needed.

    Love you Michy

  5. admin says:

    Rissa, the vitamins that I take were given to me by the doctor, and they did tell me when to take them – like I can’t take calcium and potassium within about an hour of taking the T4, but I can’t do it within 4 hours of taking T3… well, I take T3 every four hours! LOL So now, the vitamins are all taken at bedtime, since I don’t take T3 at bedtime. It keeps me awake.

    Yes, definitely too young to die. I would think that if I were 100, I’d probably still feel that way.

    Love you too! I plan to stick around for a long, long time… I’d just like to be healthy while I’m doing it!

  6. Deedee Childress says:

    whoah this blog is excellent i love reading your posts. Keep up the good work!

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