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I found me! Update & Stuff

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Okay, so for those who have been following my health saga, you probably know what’s going on with me. For those who haven’t, I’ll briefly update. I got a couple of diagnoses from different doctors, and none of them agreed with the other ones. It’s very frustrating when doctors can’t agree. How is a patient supposed to know what to do? One says to take steroids because I have Addison’s Disease, and he bases this decision on blood work and lab tests that clearly show my natural steroid level is low, and prescribes me steroids, then tests me again in a month and my natural steroids (cortisol) is still low, so he ups them again. Another looks at a middle aged overweight woman and without even looking at any blood work or lab tests, says there is absolutely no way I can have Addison’s Disease and to tells me to stop taking the steroids, immediately.

So I did. Not because I really wanted to, but because he ordered a second $500 ACTH stimulation test to try to prove to me that I don’t have Addison’s Disease. I stopped taking the pills the other doctor had given me to prove to him I do, because I know the ACTH stimulation test will be the same again if I take it. I knew it was right. Why in God’s name I didn’t stand up for myself and tell him that in the office I will never know. I think I was just defeated.

DEPRESSION & MICHY

So I came off the steroids, and for three days I was depressed, staring at the wall, unfunctioning depressed. Then on the second day, the pain came back. I holed up in the bedroom, refusing to get out of bed for anything except to pee and get back in bed. I whined a lot, when I even had the energy to whine. Mostly, I laid there staring at the wall. Sometimes, in between, I’d tear up and almost cry, but I didn’t have the energy even for that. The pain was bad, the mood was bad, I was bad… then, I got awful sciatic pain. I know better than to lay around like that so much because it always tears up my back and there is absolutely no pain in the world I have ever felt that is worse then full-on, both back and both legs, horrible, awful, miserable pain.

So I took pain pills. I took muscle relaxers. I propped myself up in bed on my knees with my ass in the air while I got people to take turns rubbing my low back to try to get the nerve to release. Nothing worked. Getting up and moving around made it better, but as many of you know, I can’t walk for very long without falling, hurting or both, so pacing like I used to do when my back was bad wasn’t an option. I stretched. I had people stretch me. Nothing worked. I took some neurontin, which I know takes some of the edge off the pain, but it didn’t take enough off to let me function.

I finally said, “Enough!” and I took a couple of the steroids. Within the hour, I was about 50% down in pain, then the sciatic pain almost went away and the other pain that I always have came back, but much lower than before. So I took some more, my usual dosage the first doctor had prescribed, and both the sciatic pain and the other pain were mostly gone–not gone, but mostly. took steroids (hydrocortisone) for two days, stopped again, and both pains came back. Took a low dose just to get through it.

A strange rash that I’ve had before but no doctor had seen yet came up on my hands.

A RASH GETS ME DIAGNOSED!

My best friend, Lynn, consulted an online doctor, one who had no vested interest in diagnosing me other than he would not get paid unless she accepted his answer on the website. She got a doc here in the states, who actually spent plenty of time talking back and forth with her. He suggested a diagnosis of polymyositis. I went and read the description and it was dead on. That research led me to a condition called PGA-Type II. The rash that appeared on my hand looked identical to polymyositis, or more accurately, dermatositis, related to polymyositis, and my symptoms matched exactly. The more I read, the more I found that there is a condition related to this called Polyglandular Autoimmune Syndrome Type II. The requirements for this condition are having the autoimmune antigens for Hashimoto’s Thyroiditis and Addison’s Disease and/or Type 1 Diabetes Mellitus. Well, I don’t have diabetes, which was an “and/or” condition, but I do have hypothyroidism and I do have adrenal insufficiency and I have suspected hypopituitarism.

Hypothyroidism is what Hashimoto’s Thyroiditis causes and primary adrenal insufficiency is Addison’s Disease, and many people with PGA-II have a form of hypopituitarism…

So I go to my PA, the one who has tried to help me, but is limited because she isn’t a specialist, and the second thing she said to me, after seeing my rash on my hands and before I said anything at all about my research was, “You know, I’ve been doing some reading, and my (someone in her family) had something called poly, or multiple, glandular autoimmune, PGA…” and I interrupted her and said, “I was just reading about that last night…” Sh had been reading about adrenal insufficiency in some books she had ordered just to learn more about how to treat me and what I would be facing, and it was something in those books along with her personal experience with it with a family member that got her to thinking.

Doesn’t the universe work in a wonderfully mysterious way?

I GOT MY STEROIDS BACK AND THEN SOME!

So after a little more talking with her, she is going to get me a referral to a doctor who is right here in this area who specializes in this condition, and in the meantime, she has prescribed me 40mgs per day of steroids. I can take as little as 20mg and as much as 60mg if I need it, and can adjust the dosage as my health, pain level, and energy levels permit. This is actually a low level for this condition, but because of my weight right now (we really don’t need it to go UP more!) and because we haven’t confirmed definitively that this is what’s wrong with me — though I think we all know it is right this time — she doesn’t want to take a chance on more than that. I get that.

Today is my second day back on steroids. The first day, I was feeling much better just a few hours after the first dose, but today, I’ve been up most of the day, catching up on work and emails and even cleaned the fridge out and cooked dinner tonight. I am also already thinking differently too, leaving the bedroom again, wanting to make plans to go out and do things as simple as shopping at Sam’s this weekend and perhaps catching a movie, things I would never consider when I’m not on steroids.

IT WASN’T ENOUGH, WASN’T RIGHT

Lynn was so relieved when I got the Addison’s diagnosis, thinking this was finally it, but even on the low-dose steroids they gave me, I wasn’t up to my par or even close to it. I kept telling Lynn, “I’m happy to get the adrenal insufficiency diagnosis, I am, but I don’t feel like this is all there is. I can’t shake the feeling that there’s something else that is CAUSING the adrenal insufficiency and we’re still not quite there.” Ryan actually even told me that I was just so used to the diagnoses being wrong and so used to having to fight to get anywhere with my health stuff that maybe I was making a problem where none existed and to just let them keep treating me for this. But I knew in the back of my mind, deep in my heart, with all my being that it still wasn’t quite right yet.

PGA-II – that’s right. It encompasses all my conditions, multiple endocrine deficiency syndrome is an alternative name for it, Schmidt’s Syndrome is another, and it takes in my hypopituitarism, hypothyroidism, adrenal insufficiency and the rash that keeps happening mysteriously on my hands that’s not contagious, not allergic, and not seeping. Just itching and raised and very ugly. Guess what treats the rash, the adrenal insufficiency, the muscle weakness and the pain? High-dose steroids, the very thing I’ve been begging for for the past two 1/2 years. Levothyroxine and a muscle relaxer take care of the other conditions I have to deal with. Seven pills per day and not one of them makes me loopy, cranky, manic or depressed. All of them make me feel human again.

They make me feel like me.

I’M NOT PERFECT AND I’M NOT YOUNG

Oh, I’m not perfect and I know that all the damage that’s been done to my body won’t heal over night. My legs are shaky still, my hands tremble because the muscles are super weak (part of the condition) and the steroids make me ravenous so I have to be very careful what I eat. But with the increased activity because I can get out of bed and move around and DO stuff will help offset a lot of the weight gain potential steroids cause and helps with strengthening muscle. I will likely work with a physical therapist and a neural-muscular massage therapist to do toning and stretching exercises to strengthen up and try to keep my back and arm and leg muscles strong. The more I use them, the less atrophy and weakness the condition can cause for me. But because of my back, I want to be sure I’m not doing anything that will damage it further and cause pain, not when I’m so close to feeling like me again.

I’ve gained a lot of weight. I’ve lost a lot of years. I lost a lot of me. But for the first time in nearly seven years, I truly believe this is the answer and there is real hope and reality that I can and will recover at least a big chunk of all that was lost. I still won’t be able to stand for long, and I’ll never be able to walk long distances with this back, but at least I might be able to walk outside and water the plants and not fall on my face or need to take the chair. Maybe I can walk outside and sit by the pool without needing someone’s help to do it. Maybe I won’t wake up trembling in pain every morning and need help just to get to the bathroom — this morning I got out of bed on my own, stood without pain (had some stiffness, but that’s not the same as pain!) and went to the bathroom without waking up the entire household to do it!

If you want to read more about it, there’s some info about it on this website: http://emedicine.medscape.com/article/124287-overview

So I’ve bored you enough with my medical stuff. I was just so happy to share this finally… it’s finally the right answer. I finally know what is needed to make me better. I am only two days into treatment this time and I’m already feeling better, and everything I’m reading says it can take 4-6 weeks or more to feel fully better from this. So there’s hope I might feel even better later down the road. There’s also a chance that if my back gets worse, I might be able to get some help with it – but oddly enough, the steroids should also help immensely with my back pain and inflammation too.

It’s really win-win for me right now. Prednisone is something I’ve been on long-term twice before, and I know it doesn’t cause the steroid psychosis that dexamethasone does, so even at the higher dosages I should be fine, and I can scale back and up on the dosages some to make me feel best, which is an awesome thing for me! We’d been wanting to ask if we could do that, but we couldn’t even get a doctor to agree to give me pred much less let me self dose, and now I’ve got both!

I was just so happy about it all I had to take a moment in between getting caught up to let you all know.

I’m sure I’ll talk about it again sometime too, like when we see the specialist.

THE MORAL OF MY STORY

If there’s one thing I hope everyone takes from this it’s this: If you know there’s something wrong, it’s very unlikely you’re a hypochondriac. It’s more likely you know yourself and your body that well. Don’t give up. Find someone who believes you and believes in you and have them advocate for and with you. I had that in Lynn. I HAVE this in Lynn and I love her so much for it. It doesn’t have to be a husband or a family member or a friend, but find someone who believes you, who will always believe you are sick, and let them be strong for you when you’re ready to give up.

Lynn cried with me, and when I was out of tears, she cried for me, and she got pissed off for me, and she yelled at nurses for, and she made appointments and forced me to go to them and she was right there with me holding my hand through it all. My daughter also gets a big nod, because she really pulled through for me many times too. My son deserves a big pat on the back for taking such good care of me when it was just me and him and for being mature and grown up when it was hard for him to be, so he didn’t add to my problems. He’s a good kid. So does Ryan, because he put up with some of the worst aspects of me during the initial downhill slide, when I was the most angry, most frustrated and most sad because of all I could see slipping away from me. And to Gregg, because he made me laugh and never treated me a single time like I was ‘sick’, when even some of those closest to me meant well but did-he made me feel normal when I was anything but. And to my dog, for learning what “gentle… be gentle with mama…” meant, and still jumping up on me and licking my face anyway. He made me happy when it was hard to be happy.

Without this support, I would probably be dead right now. It’s not melodramatic; it’s true. Find this for yourself, even if you have to hire a medical advocate! (they do exist!) It made all the difference between getting well, getting a diagnosis and just giving up and waiting to die.

And also, blog about it. Talk about it. Share it with others. you would not believe how your comments, both here and on FB and other places around the net, have meant to me. Knowing I had you all behind me, praying for me, sharing reiki and energy and love and light and friendship and caring with me, virtual hugs and kisses and words of encouragement and frustration… it made a difference. It will continue to make a difference.

I love you all…

Love and stuff,
Michy

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One Response to “I found me! Update & Stuff”

  1. Laurie D says:

    I pray you continue to find that spark of light you have found in the tunnel until it leads you out the other end to recovery. Hope is a powerful force of light.

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