{"id":490,"date":"2011-06-27T02:55:11","date_gmt":"2011-06-27T02:55:11","guid":{"rendered":"http:\/\/michelledevon.com\/?p=490"},"modified":"2021-01-02T03:03:27","modified_gmt":"2021-01-02T03:03:27","slug":"the-learning-curve-life-is-a-roller-coaster","status":"publish","type":"post","link":"https:\/\/michelledevon.com\/index.php\/2011\/06\/27\/the-learning-curve-life-is-a-roller-coaster\/","title":{"rendered":"The Learning Curve: Life is a Roller Coaster"},"content":{"rendered":"

This is very long\u2026 I\u2019m writing it for myself, mostly, a record, a way of purging the thoughts in my head, but also, I know there are others out there like me who are struggling with a diagnosis,\u00a0struggling with doctors who don\u2019t understand<\/a>, struggling with family and friends who mean well but don\u2019t \u2018get it\u2019\u2026 and if you are like me, you scour the blogosphere, the health boards, the forums and look for anyone who might possibly \u2018get it\u2019, or who might have some insight into why things are the way they are.<\/p>\n

If any of these conditions exist for you, maybe someone will benefit from my story\u2026 if not, don\u2019t feel obligated to read. This is just more about me, for me, put out there for whomever it might help.<\/p>\n

###<\/p>\n

It\u2019s been about a couple of weeks now since I got a more detailed information about what is really wrong with my health. I\u2019ve been on 60mg of Prednisone daily since then. Well, correction: I\u2019ve been given up to 60mg I can take per day, but I\u2019m not necessarily supposed to take that much if I don\u2019t need that much. So I take 20mg in the morning, then dose in 5-10mg increments throughout the day as I need them. How I know I need them right now is tough: I wait until I have symptoms. That is, if I get shaky, feel pain, the nausea comes back, etc, then I know I need a dose. I take the smallest dose possible, then every 20 minutes I increase it by 2.5-5mg until the symptoms go away.<\/p>\n

Unlike a diabetic who doesn\u2019t make enough insulin and can measure blood sugar to see how much to dose, people who have adrenal insufficiency\u2013not just adrenal fatigue or exhaustion but rather actual insufficiency (It\u2019s called Addison\u2019s Disease, but it\u2019s part of a bigger issue called PGA-II \u2013 more on that later)\u2013there is is no test I can do to see what my cortisol levels are immediately and adjust. So the only way I can dose is to see how I feel and know and trust that the medication does make the symptoms go away once I get it to the right dosage.<\/p>\n

This means that I have to let myself feel bad sometimes in order to feel better.<\/p>\n

LIFE IS LIKE THAT THOUGH<\/span><\/strong><\/p>\n

That got me to thinking about life in general and how this is not any different. Sometimes, you have to go through the pain and suffering to get to the other side. In real life, it\u2019s easier for me though. You make a decision that hurts you a bit bigger at one time but that you know will make you feel better in the long run, versus staying with a lower level of hurt long term. Like a bad relationship. You know that you should leave, but you\u2019re afraid of the initial pain, though time and again life has proved repairable, everything always gets better, etc. Still, what\u2019s the song say, \u201cThe first cut is the deepest\u2026\u201d<\/p>\n

WATER IS GOOD AND BAD<\/strong><\/p>\n

Right now, I\u2019m back and forth between severely dehydrated and waterlogged. I\u2019m drinking Powerade Zeros, to keep potassium and sodium up. We doing salt, but the salt started to burn\u2026 well, in places you really don\u2019t ever want to burn, which included my stomach and more\u2026 uhm\u2026 delicate places. We\u2019re pretty sure we know the problem is fluctuating aldosterone, a hormone that has to do with the Addison\u2019s Disease and the other stuff going on with me. When the prednisone was increased to such high levels, all the fluid I had been retaining for several years, off and on, started just pouring out of me. By pouring out, I mean, I was peeing and spewing and my nose was running and my eyes were watering like I was crying but I wasn\u2019t. Water just flowing from every pore. I was sweating. It was crazy. Then, suddenly, I looked down one day and realized, Oh, My God! I have feet! I have ankles! Oh, gosh, look\u2026 TOES! I\u2019m now also taking fludrocortisone, which is a mineralcorticoid steroid, and that made me puff up like a blowfish, but we\u2019re working down on the dosage and I\u2019ll eventually get it all balanced. I hope.<\/p>\n

SHRINK WRAPPED MICHY<\/strong><\/p>\n

So yeah, finding long lost body parts wasn\u2019t a bad thing, but then the water wasting didn\u2019t stop. Once all the fluid was gone, I started to shrivel up. Have you ever used those vacuum sealers that suck all the air out of plastic bags? My body started to do that, implode inward, shriveling up, shrinking up tight. Hey, it\u2019s the tightest my belly has been since I was in high school! Well, okay, not\u2026 but a girl can fantasize, no?<\/p>\n

While it seems like a good thing to shrink, and the scale was agreeing with me with the weight loss, my skin was losing water too, and creases from the sheets of the bed were staying on my skin for hours after getting up. I\u2019d rest my hand on the side of my computer and the crease from the indention of the computer would dig into my skin and it wouldn\u2019t refill and plump back up. Worse yet, I had this irritating dry cough too. The worst part of it was no energy. None. I literally had no energy reserves. Ugh.<\/p>\n

BALANCE, BALANCE, BALANCE<\/strong><\/p>\n

The problem right now is a simple one though. I mean, it\u2019s scary at times and it\u2019s irritating, but we know why it\u2019s happening and we know what we need to do to fix it, so that\u2019s a hell of a lot better than where I was before when we didn\u2019t know what was going on and I just felt lousy for no good reason. Now, I have reasons and we have choices and actions we can try to fix it. Eventually, over time\u2013and the stuff I\u2019m reading says it can take up to a couple of years for some people to get regulated\u2013we will find the perfect combination of these drugs and steroidal hormone replacements and such and it will all even out.<\/p>\n

Until then, I just have to try to stay as stable and healthy as possible. I\u2019m good with that. I\u2019m losing weight again, eating better, feeling a lot better even if I\u2019m a little under the weather the last couple of days\u2026 the week prior to the dehydration though was the best week I\u2019ve had in over seven years. No lie, my friends. I had one amazing, pain-free, energy high, wonderful, beautifully amazing week \u2013 the best in over seven years when it comes to how I feel. The high-dose steroids help with my back pain and inflammation there too, so I was able to stand for a time, walk a little bit without much pain at all, do some stretches that felt amazing that I couldn\u2019t do without pain before. I cooked, cleaned, got caught up on some household projects I had to do, caught up on some work projects I\u2019m still behind on but made a lot more headway than I thought I would. I felt like me for a week. That was an amazing gift.<\/p>\n

I had no pain meds, no muscle relaxers, nothing. I was afraid after two years solid of taking the pain pills that I was dependent upon them, or addicted, or whatever word you want to use, but the truth is, when I don\u2019t feel pain, I don\u2019t even think to reach for them. I took a pain pill two nights ago when the dehydration had me aching really bad, so I could relax and try to sleep. That\u2019s the first pain pill I\u2019d had in two weeks, and that pleases me more than I can say. I took one last night too, because the pain is there again, but it\u2019s much reduced from where it was. I was taking 2-5 pain pills per day for two years solid, so two pills in four weeks is pretty good. The pain pills make my brain foggy, and it\u2019s nice to finally be able to think a bit more clearly, to remember things, to not feel so foggy and out of the loop of my own life.<\/p>\n

Anyway\u2026 as for balance, let me show you something scary:
\n\"\"<\/p>\n

This is what I mean by balance. One day, all day long, my BP was around 142\/95, pulse was 59. the next day, all day long, my BP was around 84\/45, pulse 58. My pulse is great, but the BP fluctuations are scary. When it\u2019s in the 140\/90 range, my head pounds and pounds and pounds and feels like it\u2019s going to explode, I have high anxiety and feel restless and jittery. When it\u2019s super low, like 84\/45 (and it\u2019s been lower), I have no energy, feel listless, like I can\u2019t even raise my arm up. I also feel like my chest is hollow.<\/p>\n

The good news is, since I started the fludrocortisone, my BP has been steady at 130\/79\u2026 which is a little higher than we\u2019d like, but it\u2019s nowhere near dangerous or bad, considering how much prednisone I\u2019m taking. My blood glucose is good too, which is a worry when steroids are taken long term. I get my actual insulin levels checked next week.<\/p>\n

LAB WORK<\/strong><\/p>\n

I still have a bunch of lab work to do tomorrow. I don\u2019t want to get poked again, but it looks like I will have to in order to get better. We have a diagnosis now, but we need some lab tests to determine what kind of the diagnosis I have and what they will do to treat it.<\/p>\n

NEW DRUGS<\/strong><\/p>\n

I had Cytomel added to my thyroids meds. Cytomel makes me buzzed. I\u2019m not sure that\u2019s a good thing or a bad thing, but I do get a little tiny bit manic with it, for a short time, and it lets me get a lot of work done too. I have energy I haven\u2019t had in a while, at least, I feel energetic. The problem is, another condition is keeping me from BEING energetic, in that I have some severe muscle weakness that isn\u2019t helping. Anyway, these are the two new drugs, and then along with the supplements, I\u2019m now on the lowest\/least amount of medication I\u2019ve been on in about seven years too, and each pill actually makes sense to me this time, because I\u2019m seeing results finally.<\/p>\n

DIAGNOSES<\/strong><\/p>\n

So what\u2019s wrong with me? Well\u2026 it\u2019s autoimmune. Yes, I know, it seems everyone is getting autoimmune these days, right? There\u2019s a reason for that. Our society, the chemicals in our foods and environment, toxins, antibiotics, resistance, and all sorts of stuff are causing people to get their immune systems in overdrive and eventually, when there\u2019s nothing for the immune system to fight, it starts attacking the body.<\/p>\n

For me, I have two main issues that were finally diagnosed. One is called Polyglandular Autoimmune Type II \u2013 or PGA-II, or multiple endocrine deficiency syndrome type II. There\u2019s actually several names for it. Some of you might remember when they thought I had Addison\u2019s disease. Then they thought I was hypothyroid. Then they thought I had hypopituitarism, or that there was something wrong with my hypothalamus\u2026 well, the point is, they were all right. PGA-II is a disorder that attacks the HPA axis (hypothalamus, pituitary, adrenal axis)\u2026 I have Addison\u2019s Disease, Hashimoto\u2019s Thyroiditis and it\u2019s looking suspiciously like I have diabetes inspidius too (not the blood sugar diabetes, but the one where the kidneys waste water and you lose minerals from your body and get dehydrated and such). So PGA-II is definitely the right diagnosis \u2013 FINALLY.<\/p>\n

But that didn\u2019t account for the pain and the edema. So I have this rash on my hands, don\u2019t know where it came from. I never bothered to say anything to the doctor about it, because, quite frankly, the rash was so minor in the scheme of all the major problems I was having, I just didn\u2019t even think to complain about it. Then the doctor saw it. Boom. Diagnosis. A lousy little skin rash I\u2019d been fighting off and on since 2006 ended up being the one thing that got me a diagnosis.<\/p>\n

How\u2019s that for some irony in the universe?<\/p>\n

DERMATOMYOSITIS \/ POLYMYOSITIS<\/strong><\/p>\n

An idiopathic inflammatory myopathy that causes muscle wasting and regeneration, weakness, pain, tenderness, swelling, edema, rashes, and untreated, death. Nice, huh? Only 72% of all people diagnosed with it are still alive five years after diagnosis. That means more people die from it than do some cancers, but that\u2019s okay, \u2019cause this has cancer associated with it.\u00a0 So yeah, I have to get a cancer screening regularly to make sure I don\u2019t have bladder, lung or abdominal cancer and to rule out the most common, non-hodgkin\u2019s lymphoma. That\u2019s a little scary, but at least I know the increased risk and can watch for it, right? I\u2019m supposed to get an EMG and a muscle biopsy to confirm diagnosis, but we might just be bypassing that. It\u2019s a scary condition. I\u2019ve been a little numb about it too, not sure what to think. For some lucky people, they actually do go into remission with this, some of them for the rest of their lives.<\/p>\n

I\u2019d like to be one of those people. So that\u2019s where I\u2019m putting my energy. Plus, I\u2019ve already beat the odds. If the rash I had back in 2006 was the first onset of symptoms, which makes sense looking back now, then that means it\u2019s already been five years and I\u2019m still alive and as far as we currently know, I\u2019m cancer free too. I started treatment and there has been improvement already, though there are some minor setbacks with the treatment, so all said and done, I think this might just be tolerable.<\/p>\n

NO PAIN MEDS = GOOD THING<\/strong><\/p>\n

Did I mention how much I love being off the pain meds? I mean, it\u2019s nice to have them when the pain is bad, like last night when I took one to help bring pain down enough to sleep, but I used to wake in the morning and be completely unable to move \u2013 literally unable to move \u2013 until someone else gave me a pain pill and my other meds and I\u2019d lay in bed for an hour waiting for the pain to lessen, never go away, but lessen.<\/p>\n

It\u2019s all a start\u2026 we\u2019re on the right track.<\/p>\n

For those who are reading this because you too have a new diagnosis\u2013and thanks to those who have emailed about the\u00a0steroid psychosis<\/a>\u00a0and other health stuff \u2013 I\u2019m so glad it\u2019s helping some of you find answers \u2013 I wanted to include my diagnoses and medication so it can help you. I learned so much from reading medical forums from people being treated with the same conditions and that took me to asking my doc for a new medication that has made a huge difference. So while I\u2019m not a doctor, and this is not medical advice, you can see if any of it might be worth thinking about.<\/p>\n

PGA-TYPE II \u2013 POLYGLANDULAR AUTOIMMUNE TYPE II \u2013 OR \u2013 MULTIPLE ENDOCRINE DEFICIENCY SYNDROME TYPE II<\/strong>\u00a0\u2013<\/p>\n

This is a condition that includes several other stand-alone conditions that occur together. It\u2019s not uncommon when something is wrong with the HPA-axis for there to be multiple endocrine system failure or deficiency, especially when it\u2019s autoimmune related, since the autoimmune antibodies attack the same types of cells and tissues, in this case, the endocrine system ones. This can include the thyroid, pituitary, hypothyalamus, adrenals, kidneys, sex hormones, the brain itself\u2026 and in some cases, the heart is involved too. The three main conditions of PGA-II for me are: Hashimoto\u2019s Thyroiditis, Adrenal Insufficiency (Addison\u2019s Disease), and hypoaldosteronism with diabetes insipidus.<\/p>\n