{"id":564,"date":"2011-06-03T00:22:34","date_gmt":"2011-06-03T00:22:34","guid":{"rendered":"http:\/\/michelledevon.com\/?p=564"},"modified":"2021-01-03T00:24:36","modified_gmt":"2021-01-03T00:24:36","slug":"i-found-me-update-stuff","status":"publish","type":"post","link":"https:\/\/michelledevon.com\/index.php\/2011\/06\/03\/i-found-me-update-stuff\/","title":{"rendered":"I Found Me! Update & Stuff"},"content":{"rendered":"

Okay, so for those who have been following my\u00a0health saga<\/a>, you probably know\u00a0what\u2019s going on with me<\/a>. For those who haven\u2019t,\u00a0I\u2019ll briefly update<\/a>. I got a couple of diagnoses from different doctors, and none of them agreed with the other ones. It\u2019s very frustrating\u00a0when doctors can\u2019t agree.<\/a>\u00a0How is a patient supposed to know what to do? One says to take steroids because I have Addison\u2019s 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\u2019s Disease and to tells me to stop taking the steroids, immediately.<\/p>\n

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\u2019t have Addison\u2019s 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\u2019s name I didn\u2019t stand up for myself and tell him that in the office I will never know. I think I was just defeated.<\/span><\/p>\n

DEPRESSION & MICHY<\/strong><\/p>\n

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\u2019d tear up and almost cry, but I didn\u2019t have the energy even for that. The pain was bad, the mood was bad, I was bad\u2026 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.<\/p>\n

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\u2019t walk for very long without falling, hurting or both, so pacing like I used to do when my back was bad wasn\u2019t 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\u2019t take enough off to let me function.<\/p>\n

I finally said, \u201cEnough!\u201d 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\u2013not 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.<\/p>\n

A strange rash that I\u2019ve had before but no doctor had seen yet came up on my hands.<\/p>\n

A RASH GETS ME DIAGNOSED!<\/strong><\/p>\n

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\u2019s Thyroiditis and Addison\u2019s Disease and\/or Type 1 Diabetes Mellitus. Well, I don\u2019t have diabetes, which was an \u201cand\/or\u201d condition, but I do have hypothyroidism and I do have adrenal insufficiency and I have suspected hypopituitarism.<\/p>\n

Hypothyroidism is what Hashimoto\u2019s Thyroiditis causes and primary adrenal insufficiency is Addison\u2019s Disease, and many people with PGA-II have a form of hypopituitarism\u2026<\/p>\n

So I go to my PA, the one who has tried to help me, but is limited because she isn\u2019t 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, \u201cYou know, I\u2019ve been doing some reading, and my (someone in her family) had something called poly, or multiple, glandular autoimmune, PGA\u2026\u201d and I interrupted her and said, \u201cI was just reading about that last night\u2026\u201d 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.<\/p>\n

Doesn\u2019t the universe work in a wonderfully mysterious way?<\/p>\n

I GOT MY STEROIDS BACK AND THEN SOME!<\/strong><\/p>\n

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\u2019t need it to go UP more!) and because we haven\u2019t confirmed definitively that this is what\u2019s wrong with me \u2014 though I think we all know it is right this time \u2014 she doesn\u2019t want to take a chance on more than that. I get that.<\/p>\n

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\u2019ve 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\u2019s this weekend and perhaps catching a movie, things I would never consider when I\u2019m not on steroids.<\/p>\n

IT WASN\u2019T ENOUGH, WASN\u2019T RIGHT<\/strong><\/p>\n

Lynn was so relieved when I got the Addison\u2019s diagnosis, thinking this was finally it, but even on the low-dose steroids they gave me, I wasn\u2019t up to my par or even close to it. I kept telling Lynn, \u201cI\u2019m happy to get the adrenal insufficiency diagnosis, I am, but I don\u2019t feel like this is all there is. I can\u2019t shake the feeling that there\u2019s something else that is CAUSING the adrenal insufficiency and we\u2019re still not quite there.\u201d 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\u2019t quite right yet.<\/p>\n

PGA-II \u2013 that\u2019s right. It encompasses all my conditions, multiple endocrine deficiency syndrome is an alternative name for it, Schmidt\u2019s Syndrome is another, and it takes in my hypopituitarism, hypothyroidism, adrenal insufficiency and the rash that keeps happening mysteriously on my hands that\u2019s 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\u2019ve 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.<\/p>\n

They make me feel like me.<\/p>\n

I\u2019M NOT PERFECT AND I\u2019M NOT YOUNG<\/strong><\/p>\n

Oh, I\u2019m not perfect and I know that all the damage that\u2019s been done to my body won\u2019t 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\u2019m not doing anything that will damage it further and cause pain, not when I\u2019m so close to feeling like me again.<\/p>\n

I\u2019ve gained a lot of weight. I\u2019ve 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\u2019t be able to stand for long, and I\u2019ll 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\u2019s help to do it. Maybe I won\u2019t wake up trembling in pain every morning and need help just to get to the bathroom \u2014 this morning I got out of bed on my own, stood without pain (had some stiffness, but that\u2019s not the same as pain!) and went to the bathroom without waking up the entire household to do it!<\/p>\n

If you want to read more about it, there\u2019s some info about it on this website:\u00a0http:\/\/emedicine.medscape.com\/article\/124287-overview<\/a><\/p>\n

So I\u2019ve bored you enough with my medical stuff. I was just so happy to share this finally\u2026 it\u2019s 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\u2019m already feeling better, and everything I\u2019m reading says it can take 4-6 weeks or more to feel fully better from this. So there\u2019s hope I might feel even better later down the road. There\u2019s also a chance that if my back gets worse, I might be able to get some help with it \u2013 but oddly enough, the steroids should also help immensely with my back pain and inflammation too.<\/p>\n

It\u2019s really win-win for me right now. Prednisone is something I\u2019ve been on long-term twice before, and I know it doesn\u2019t cause the\u00a0steroid psychosis that dexamethasone does,<\/a>\u00a0so 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\u2019d been wanting to ask if we could do that, but we couldn\u2019t even get a doctor to agree to give me pred much less let me self dose, and now I\u2019ve got both!<\/p>\n

I was just so happy about it all I had to take a moment in between getting caught up to let you all know.<\/p>\n

I\u2019m sure I\u2019ll talk about it again sometime too, like when we see the specialist.<\/p>\n

THE MORAL OF MY STORY<\/strong><\/p>\n

If there\u2019s one thing I hope everyone takes from this it\u2019s this: If you know there\u2019s something wrong, it\u2019s very unlikely you\u2019re a hypochondriac. It\u2019s more likely you know yourself and your body that well. Don\u2019t 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\u2019t 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\u2019re ready to give up.<\/p>\n

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\u2019t add to my problems. He\u2019s 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 \u2018sick\u2019, 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 \u201cgentle\u2026 be gentle with mama\u2026\u201d meant, and still jumping up on me and licking my face anyway. He made me happy when it was hard to be happy.<\/p>\n

Without this support, I would probably be dead right now. It\u2019s not melodramatic; it\u2019s 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.<\/p>\n

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\u2026 it made a difference. It will continue to make a difference.<\/p>\n

I love you all\u2026<\/p>\n

Love and stuff,
\nMichy<\/p>\n

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