{"id":557,"date":"2011-07-30T00:09:34","date_gmt":"2011-07-30T00:09:34","guid":{"rendered":"http:\/\/michelledevon.com\/?p=557"},"modified":"2021-01-03T00:10:35","modified_gmt":"2021-01-03T00:10:35","slug":"i-fell-asleep-on-the","status":"publish","type":"post","link":"https:\/\/michelledevon.com\/index.php\/2011\/07\/30\/i-fell-asleep-on-the\/","title":{"rendered":"I Fell Asleep on the"},"content":{"rendered":"

\u2026 but at least I didn\u2019t fall in. Or fall over.<\/p>\n

That shows you just how tired I am. Sometime in the middle of the night last night, I woke up, had to pee, went to the bathroom\u2026 and I don\u2019t know how long I sat there, but I woke up with a start with my head leaning against the wall, sliding slowly downward\u2026 jerk, awake, wha\u2013 \u2013 ohhh, yes, I\u2019m peeing. Wait, no, I\u2019m done peeing. Oh, okay. I\u2019m on the toilet. Nice.<\/p>\n

That\u2019s when you know you\u2019re really tired, when you can\u2019t even make it through peeing without falling asleep. I nodded off and nearly fell asleep watching a movie tonight and I fell asleep in the car, or at least dozed, while trying to get my daughter\u2019s car that had broken down and been abandoned there for a week.<\/span><\/p>\n

PULSE OX and HEART RATE<\/p>\n

I started taking some\u00a0T3 Cytomel<\/a>\u00a0at the same time I started taking some\u00a0Florinef.\u00a0<\/a>One, the T3, is for the\u00a0autoimmune thyroiditis, called Hashimoto\u2019s<\/a>, and the other, the Florinef, is for the mineralcorticoids for the\u00a0Addison\u2019s disease<\/a>. I started both of them at the same time, and started working up on them like I\u2019m supposed to do, and within about a week, I was having some major symptoms\u2026 my resting heart rate is now about 90-100, and my heart rate when standing goes to about 120. My heart rate when moving around goes to about 140-150. It doesn\u2019t stay up that way long, but it\u2019s enough to feel it and feel it badly.<\/p>\n

My sats though do the opposite: The higher my heart rate, the lower my pulse ox. At the worst, I\u2019ve been down in the 78 range (normal people should always be at 98-100%), and when moving around or standing, I\u2019m averaging about 82%. Sitting still, doing nothing, averages about 91% and sleeping at night averages about 90%, unless I\u2019m moving, then it\u2019s 88-90%. This isn\u2019t horrible. Many people have had worse, I\u2019m sure, but I\u2019ll tell you when I\u2019m sitting there, gasping for breathe, wheezing, my eyes bulging out, my veins in my neck bulging and my chest is so tight and painful I can\u2019t stand it\u2026 the anxiety is awful, the fear is very real. The pain is pretty bad too.<\/p>\n

Fortunately, it only takes a few minutes for it to get better\u2026 but those few minutes are excruciatingly miserable. And scary.<\/p>\n

WHY IS IT HAPPENING?<\/strong><\/p>\n

Who knows why it\u2019s happening. I came down off the Florinef and it didn\u2019t improve, but a lot of the edema that I had started coming down. The Cytomel I stopped already too, about four days ago, but with the half life of it all, it could still be a few more days until we know if that\u2019s helping or not. I do seem somewhat improved, and my recovery time with exertion is better too, but it\u2019s not enough to think the medication change is impacting anything.<\/p>\n

The Cytomel can cause\u00a0congestive heart failure or CHF symptoms.<\/a>(<\u2014\u2013scary stuff there).that\u2019s sort of scary too. We don\u2019t know why it\u2019s happening, but the pulse ox doesn\u2019t lie. Neither does the pain and heart rate.<\/p>\n

OXYGEN THERAPY SUPPLEMENTATION<\/strong><\/p>\n

So it looks like we\u2019re going to temporarily have to put me on oxygen therapy to keep my sats up. If not, organ failure and damage can begin as early as 92% and I\u2019m going below that a lot. My mother was worried about it, \u2019cause she says you can get dependent upon it and your lungs weaken, but at this point, breathing becomes more important to me \u2013 you know, living and stuff, sort of trumps being dependent upon oxygen. I\u2019d dare say most people are at least, uhm, moderately dependent upon oxygen\u2026.LOL I just need a little more, it seems.<\/p>\n

It doesn\u2019t bother me so much to need it. I think about how it might limit me, but hell, at this point, I\u2019m so limited anyway, what\u2019s one more thing. The small cases you can carry around are easy to use and carry. So who really cares if I have tubes up my nose or something? I don\u2019t anymore. I just don\u2019t.<\/p>\n

WRITING AND LIVING AND DYING AND STUFF<\/strong><\/p>\n

I haven\u2019t been writing anything at all. It felt good to write a blog post, but I\u2019m not getting any stories written or finishing up the novels I\u2019m working on. That must change. WRiting is my sanity and I\u2019ve been rather insane recently. I just can\u2019t seem to find the time, the energy or the space to get into that creative place and write. I want to write. I NEED to write. But it\u2019s eluding me, and it\u2019s killing me faster than being sick is.<\/p>\n

My daughter is living with us now, which is nice. I love having her around. It\u2019s definitely added some stress, and I\u2019ve taken on a lot more things than before with helping her get moved and dealing with her struggles. Addison\u2019s disease is a disease that is impacted greatly by stress, so my dosages are all screwed up and I\u2019m a bit imbalanced there. Taking some time to figure it all out.<\/p>\n

One thing I\u2019ve learned from this is how much I have lost. I used to be supermom when my kids were younger, doing everything for everyone and loving every minute of it. Today, I could barely hold my head up to pee without falling asleep on the toilet, much less make lunch of dinner or anything for anyone. The muscle weakness from the\u00a0DM (dermatomyositis)<\/a>\u00a0is impacting me so badly right now, I couldn\u2019t even hold the mixer to make a dessert I wanted to make, and that was with my son bringing me all the ingredients and I just sat in the chair.<\/p>\n

It\u2019s a five pound mixer, small little thing. I couldn\u2019t even hold it up to mix.<\/p>\n

Just think about that for a minute: I didn\u2019t even have the strength or the energy to hold up a five pound mixer for two minutes\u2026<\/p>\n

It\u2019s when I\u2019m off the pain meds, and sitting here feeling normal in my head (not right now, but sometimes), that I realize the most how much I\u2019ve lost. I would be sad and mourn the losses, but I don\u2019t have the energy or stamina to do it and my brain can\u2019t stay focused on it long enough to bother.<\/p>\n

ONLINE SALVATION<\/strong><\/p>\n

If not for the internet, the authors I deal with, the people on the writing forum, and my friends on FB, I\u2019d dare say life would be worse than it is. My family is great to me, don\u2019t get me wrong, but it\u2019s tough when I see them all running around in super-fast speed and I\u2019m sitting in my chair watching the world go by me. I had a bit of a crying spell the other day, asking, \u201cWhat am I going to do when my whole family just goes on with their lives and leaves me behind\u2026\u201d<\/p>\n

I\u2019m not saying they are going to do that. I just guess maybe I fear it\u2026 shouldn\u2019t, but I do. I mean, the last week, I haven\u2019t been able to wash my hair because I can\u2019t hold my hands up above my head long enough to shampoo it. I can\u2019t dry myself off from a shower, because I don\u2019t have the energy to hold the towel, and if I do try to do it, my heart rate and pulse ox go screwy and I can\u2019t breathe. I can\u2019t even sleep, something that used to help me, because I roll over and wake up gasping for air.<\/p>\n

So for brief moments of lucidity in between all the mess and chaos, I can get online, post a comment or two, and for a brief moment, feel normal, and maybe look normal to those who read me. It\u2019s a blessing\u2026 and it\u2019s a bit of a curse too.<\/p>\n

I\u2019M SO TIRED<\/strong><\/p>\n

I keep saying this over and over and I mean it in so many different ways: I am so tired. I\u2019m so tired. I\u2019m tired of blood tests and doctors appointments and tired of being sick and tired of being tired and tired of not being able to breathe or be me or do anything for myself. I\u2019m tired of all of it.<\/p>\n

And yet, I keep fighting. I keep looking for answers. I keep trying new things. I\u2019ve improved and I\u2019ve worsened, two steps forward, twelve back, nine forward, three back, two forward, whatever, whatever\u2026 I can\u2019t do math\u2013too fuzzy and never liked numbers anyway\u2013but I don\u2019t have a clue whether things are better or worse.<\/p>\n

The cruelest irony of all this is that just about three weeks ago, I had nearly six weeks of feeling freaking amazing\u2026 six weeks of no pain, more energy, more life to me, was even able to stand to take a shower, was able to walk down the hall of the doctor\u2019s office all by myself without any pain or even being winded instead of having to use the wheelchair. I felt fantastic and my head was clear, was off the pain meds completely\u2026 how did I go from there to here in such a short time? I simply don\u2019t understand. I don\u2019t know what changed. I don\u2019t think it\u2019s fair either.<\/p>\n

I got my hopes up\u2026 such a dangerous thing.\u00a0Hope is a dangerous thing<\/em>\u2026 that\u2019s the title for a novel if I ever heard one.<\/p>\n

So I whine a lot\u2026 here on my blog, and in person. My whole life has become about being sick. I can\u2019t plan a meal without thinking about what to make that meets my adrenal and weight loss diet. I can\u2019t shop without thinking about what I can and can\u2019t eat, whether someone can help me with the wheelchair, or recently whether I\u2019m going to be able to even get up out of bed by myself to get dressed to go. I can\u2019t eat out\u2026 I can\u2019t go places without someone else being with me. I can\u2019t even freaking walk from the bed to the bathroom without dropping my sats into the 80s and feeling pain. I wait as long as I can to go pee, because I know it\u2019s going to hurt to get up and walk in there. I can\u2019t sing along with my favorite songs on the computer, because that drops my sats into the upper 80s even!<\/p>\n

I used to work out, play basketball with my son, go to ballgames, walk every evening with my family\u2026 I used to stand to take a shower, stand to cook a meal, and be able to go shopping and provide for my family.<\/p>\n

I used to be able to do all these things\u2026<\/p>\n

Now, I\u2019m nothing more than a lump in a chair who can wiggle her fingers and type now and again, and even that is hard sometimes.<\/p>\n

And I hate that. More than you can know.<\/p>\n

BUT\u2026 THERE\u2019S ALWAYS A BUT, ISN\u2019T THERE?<\/strong><\/p>\n

The but here is, I won\u2019t give up. And there is some improvement. And maybe they know what\u2019s wrong with me now. Maybe the PM\/DM diagnosis is right. Maybe the PGA-II is right. Maybe this is all just a really screwed up HPA and endocrine system and when they finally get all the meds right and titrated, I will feel better and be better and regain so much of what I\u2019ve lost. Maye I will.<\/p>\n

And it\u2019s THAT maybe that keeps me going. That and my kids, who still need me. My family who still loves me even if they can run circles around me. My animals that make me smile.<\/p>\n

And you guys\u2026 all you who read me, comment to me, encourage me, pray for me, love me, etc\u2026 it helps, more than you know. More than you\u2019ll ever know.<\/p>\n

And then there\u2019s the fact I haven\u2019t made the NYT best sellers list yet\u2026 I can\u2019t give up and I can\u2019t quit and I can\u2019t even really let myself slow down too much until that happens. That\u2019s the goal. That\u2019s the dream. I know the reality of it. I know the odds. But I cannot give up, cannot die, cannot quit\u2026 not until that happens. So either I need to hurry up and get to writing, or else, I\u2019m going to live forever!<\/p>\n

Either way, I think I\u2019m okay with that.<\/p>\n

SMILE!<\/strong><\/p>\n

I do laugh. I do find pleasure in things. Don\u2019t think I\u2019m sitting here miserable. I\u2019m not. I do feel sorry for myself sometimes, but I try not to let it linger long. Tonight, it\u2019s just a tough night. I\u2019m so tired. It\u2019s 2:40 in the morning and I need to be in bed asleep and I\u2019m afraid to go to sleep. I\u2019m afraid to stand up and walk to the bedroom, \u2019cause I know my sats will drop and it will hurt. I\u2019m afraid some nights I\u2019ll fall asleep and won\u2019t wake up. I\u2019m not ready for that yet.<\/p>\n

But I have love. I have family. I have friends. I do have my writing and my stories and the work and the internet and the animals and good things do move through and into my life\u2026 and for those things, I am exceedingly grateful, humbled, and amazed.<\/p>\n

It has to get better\u2026 as Andi said,\u00a0I command it.<\/strong><\/p>\n

Love you all.<\/p>\n

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

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