… but at least I didn’t fall in. Or fall over.
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… and I don’t know how long I sat there, but I woke up with a start with my head leaning against the wall, sliding slowly downward… jerk, awake, wha– – ohhh, yes, I’m peeing. Wait, no, I’m done peeing. Oh, okay. I’m on the toilet. Nice.
That’s when you know you’re really tired, when you can’t 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’s car that had broken down and been abandoned there for a week.
PULSE OX and HEART RATE
I started taking some T3 Cytomel at the same time I started taking some Florinef. One, the T3, is for the autoimmune thyroiditis, called Hashimoto’s, and the other, the Florinef, is for the mineralcorticoids for the Addison’s disease. I started both of them at the same time, and started working up on them like I’m supposed to do, and within about a week, I was having some major symptoms… 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’t stay up that way long, but it’s enough to feel it and feel it badly.
My sats though do the opposite: The higher my heart rate, the lower my pulse ox. At the worst, I’ve been down in the 78 range (normal people should always be at 98-100%), and when moving around or standing, I’m averaging about 82%. Sitting still, doing nothing, averages about 91% and sleeping at night averages about 90%, unless I’m moving, then it’s 88-90%. This isn’t horrible. Many people have had worse, I’m sure, but I’ll tell you when I’m 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’t stand it… the anxiety is awful, the fear is very real. The pain is pretty bad too.
Fortunately, it only takes a few minutes for it to get better… but those few minutes are excruciatingly miserable. And scary.
WHY IS IT HAPPENING?
Who knows why it’s happening. I came down off the Florinef and it didn’t 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’s helping or not. I do seem somewhat improved, and my recovery time with exertion is better too, but it’s not enough to think the medication change is impacting anything.
The Cytomel can cause congestive heart failure or CHF symptoms.(<—–scary stuff there).that’s sort of scary too. We don’t know why it’s happening, but the pulse ox doesn’t lie. Neither does the pain and heart rate.
OXYGEN THERAPY SUPPLEMENTATION
So it looks like we’re 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’m going below that a lot. My mother was worried about it, ’cause she says you can get dependent upon it and your lungs weaken, but at this point, breathing becomes more important to me – you know, living and stuff, sort of trumps being dependent upon oxygen. I’d dare say most people are at least, uhm, moderately dependent upon oxygen….LOL I just need a little more, it seems.
It doesn’t bother me so much to need it. I think about how it might limit me, but hell, at this point, I’m so limited anyway, what’s 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’t anymore. I just don’t.
WRITING AND LIVING AND DYING AND STUFF
I haven’t been writing anything at all. It felt good to write a blog post, but I’m not getting any stories written or finishing up the novels I’m working on. That must change. WRiting is my sanity and I’ve been rather insane recently. I just can’t 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’s eluding me, and it’s killing me faster than being sick is.
My daughter is living with us now, which is nice. I love having her around. It’s definitely added some stress, and I’ve taken on a lot more things than before with helping her get moved and dealing with her struggles. Addison’s disease is a disease that is impacted greatly by stress, so my dosages are all screwed up and I’m a bit imbalanced there. Taking some time to figure it all out.
One thing I’ve 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 DM (dermatomyositis) is impacting me so badly right now, I couldn’t 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.
It’s a five pound mixer, small little thing. I couldn’t even hold it up to mix.
Just think about that for a minute: I didn’t even have the strength or the energy to hold up a five pound mixer for two minutes…
It’s when I’m 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’ve lost. I would be sad and mourn the losses, but I don’t have the energy or stamina to do it and my brain can’t stay focused on it long enough to bother.
If not for the internet, the authors I deal with, the people on the writing forum, and my friends on FB, I’d dare say life would be worse than it is. My family is great to me, don’t get me wrong, but it’s tough when I see them all running around in super-fast speed and I’m sitting in my chair watching the world go by me. I had a bit of a crying spell the other day, asking, “What am I going to do when my whole family just goes on with their lives and leaves me behind…”
I’m not saying they are going to do that. I just guess maybe I fear it… shouldn’t, but I do. I mean, the last week, I haven’t been able to wash my hair because I can’t hold my hands up above my head long enough to shampoo it. I can’t dry myself off from a shower, because I don’t 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’t breathe. I can’t even sleep, something that used to help me, because I roll over and wake up gasping for air.
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’s a blessing… and it’s a bit of a curse too.
I’M SO TIRED
I keep saying this over and over and I mean it in so many different ways: I am so tired. I’m so tired. I’m 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’m tired of all of it.
And yet, I keep fighting. I keep looking for answers. I keep trying new things. I’ve improved and I’ve worsened, two steps forward, twelve back, nine forward, three back, two forward, whatever, whatever… I can’t do math–too fuzzy and never liked numbers anyway–but I don’t have a clue whether things are better or worse.
The cruelest irony of all this is that just about three weeks ago, I had nearly six weeks of feeling freaking amazing… 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’s 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… how did I go from there to here in such a short time? I simply don’t understand. I don’t know what changed. I don’t think it’s fair either.
I got my hopes up… such a dangerous thing. Hope is a dangerous thing… that’s the title for a novel if I ever heard one.
So I whine a lot… here on my blog, and in person. My whole life has become about being sick. I can’t plan a meal without thinking about what to make that meets my adrenal and weight loss diet. I can’t shop without thinking about what I can and can’t eat, whether someone can help me with the wheelchair, or recently whether I’m going to be able to even get up out of bed by myself to get dressed to go. I can’t eat out… I can’t go places without someone else being with me. I can’t 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’s going to hurt to get up and walk in there. I can’t sing along with my favorite songs on the computer, because that drops my sats into the upper 80s even!
I used to work out, play basketball with my son, go to ballgames, walk every evening with my family… I used to stand to take a shower, stand to cook a meal, and be able to go shopping and provide for my family.
I used to be able to do all these things…
Now, I’m nothing more than a lump in a chair who can wiggle her fingers and type now and again, and even that is hard sometimes.
And I hate that. More than you can know.
BUT… THERE’S ALWAYS A BUT, ISN’T THERE?
The but here is, I won’t give up. And there is some improvement. And maybe they know what’s 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’ve lost. Maye I will.
And it’s 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.
And you guys… all you who read me, comment to me, encourage me, pray for me, love me, etc… it helps, more than you know. More than you’ll ever know.
And then there’s the fact I haven’t made the NYT best sellers list yet… I can’t give up and I can’t quit and I can’t even really let myself slow down too much until that happens. That’s the goal. That’s the dream. I know the reality of it. I know the odds. But I cannot give up, cannot die, cannot quit… not until that happens. So either I need to hurry up and get to writing, or else, I’m going to live forever!
Either way, I think I’m okay with that.
I do laugh. I do find pleasure in things. Don’t think I’m sitting here miserable. I’m not. I do feel sorry for myself sometimes, but I try not to let it linger long. Tonight, it’s just a tough night. I’m so tired. It’s 2:40 in the morning and I need to be in bed asleep and I’m afraid to go to sleep. I’m afraid to stand up and walk to the bedroom, ’cause I know my sats will drop and it will hurt. I’m afraid some nights I’ll fall asleep and won’t wake up. I’m not ready for that yet.
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… and for those things, I am exceedingly grateful, humbled, and amazed.
It has to get better… as Andi said, I command it.
Love you all.
Love and stuff,