RA/fibro flare up today. This is how bad it is: my husband is going to the music store to buy a bugle mouthpiece. Nick. In a music store. Buying a mouthpiece. Just picture it. If I weren’t hurting so much I’d be laughing my butt off.
Category: health
I am feeling awful today. All the driving caught up with me. My hands are on fire, I’m super accident prone, and it’s had to be a rest day. Fortunately I have a comfy blanket and a Greg to watch Netflix with. We are starting to watch Glee. I had intended to watch this with Ree, but he wasn’t interested. Greg was, so we’re fast-forwarding through the boring/sexy stuff, but watching all the singing and dancing parts. 🙂
Tonight I learned about how the definition of Rheumatoid Disease has changed in the last 15 years since I was diagnosed from just “joint pain and inflammation” to include all of my vast symptoms over the last five years (including, but not limited to, cardiovascular system issues such as high blood pressure, cerebral ischemia, heart palpitations, and stroke; autonomic system issues such as muscle weakness, muscle spasms, bladder dysfunction, spinal cord dysfunction, and sexual dysfunction; neuropsychological issues such as depression, anxiety, memory loss, brain fog, and lack of focus; demyelation of nerves, including numbness, tingling, spinal cord degeneration, and things that otherwise mimic multiple sclerosis (including brain lesions), swallowing, voice box, and throat swelling issues. Chest pain that is lung related, not cardiovascular in nature and bursitis, both of which is really where I started all those years ago in high school. ).
I read study after study, all from prestigious medical journals, with associated good, data-driven citations. I skipped the small studies with 20 people or less studied because they seemed silly.
I am super angry because I have never once in the last 15 years had a doctor explain any of this to me. Some have said “Oh, you can look it up yourself.” Or “We could print out something about this if you wanted to come back for it.” (Which I did have printed and came back for and it was just a three fold flier with information a decade old on it.)
I am struggling. I have been struggling for a lot of years now. I was diagnosed when my kids were 3-years-old and just under a year old. (There are three kids now, 18, 15, and 12). People treat you differently when you have a chronic illness from people who have something immediate like a heart attack, a surgery, or cancer. If you have something like that, people bring meals, help with child care or transportation, and housework. I have helped many people with that over the years, always to the detriment of my own family, because it was expected because I was a stay-at-home mom “with all the time in the world.” But no one has time for the chronically ill. We are expected to just suck it up and move on with life because our illness goes on and on. People expect us to get used to it, somehow. No one seems to care that we have pain and other issues that make it hard to function. No one wants to help with our meals, children, or housework. We are viewed as lazy and malingering. People and organizations constantly ask us do to things for them because they think we have a ton of unfettered, pain-free time to ourselves.
I am both angry and tired. It doesn’t actually get easier, despite the time I have had to get used to my situation. People are always assuming I have the time and energy to do everything I need to for my own family, plus whatever they don’t have time for because they work full time. I wish I could work full time. I wish I had the luxury of a healthy life. I envy people who can work full time and still take care of their kids and make dinner and run errands (and some of you even work a side hustle. How energetic!). You get these amazing, full lives. I stay home a lot. I have to sleep and rest just to be able to do the bare minimum. I don’t even shower as often as I’d like because it wears me out. It is frequently (read daily) boring and painful and I don’t wish it on anyone, not even people I’m angry with or who have hurt me immeasurably. I like to be positive and to share the good parts of my life with y’all.
I’m not looking for help or pity or anything else really at this point. If you were going to do something for my family, you’ve either done it already or chosen not to. Mostly I just wanted people to see through my eyes for a minute. If you couldn’t help us, at least you could see the kinds of things the chronically ill go through, and maybe consider helping the next chronically ill person you meet. Make the world a little easier for someone else. Because I spend a lot of my time pondering how I can help the next person I meet and I’d like to think that if I can’t help them myself maybe I can help someone else decide to help them. Thanks for reading this long, rambly post. Love you, humans.
Saw the neurologist today. Apparently I’m having one of those rare drug interactions no one else gets. Symptoms include erratically high and low blood pressure, chest pain, numbness & tingling, dizziness, memory loss, slurred speech, muscle & joint pain, muscle spasms, and ringing in the ears. So that explains just about everything except the weird spiderwebby nerve-feelings in my knees, which might be explained by my use of all the weird new equipment my gym has recently brought in to replace the stuff I used to use. Picked up my new meds, but it’ll be 2 weeks (according to the neurologist, or more, according to the pharmacist) before I’m ready for exciting life events again. So if you’ve seen/continue to see me dropping off the radar for the next few weeks, now you know why.
The hypertensive episodes are back. 😦 Had a bad one this morning. Neurologist next Wednesday if they can’t get me in sooner.
I have been going to the gym for 8 weeks now, although with all the missed days due to illness or Thanksgiving break, it’s really more like 7 total weeks. Overall I have lost 27.25 inches off the 12 points I measure (neck, chest, chest+breasts, natural waist line, belly button, hips, upper arms, mid arms, lower arms, upper thighs, lower thighs, calves) and 4 total pounds. I haven’t changed my diet any, and I didn’t really hold back at all on Thanksgiving foods that week either.
I tried on those pants from the before photos over the weekend and they are so loose, y’all. I am down to regular size clothes in the next size down (from last month) and some of the super big ones from the size below that (which is funny because some of the super small in my current size are still too small. Oh the joys of size variety across brands). I emptied a new box out on the bed today and everything in it fit fairly well. This was a small box because I took the top half out just before Thanksgiving, trying to find a cute Thanksgiving outfit. Things in the next size down box are those that currently can fit onto my body, but I can’t move around much in them. So I started this effort with five boxes of clothes going from the biggest I ever was (back in September) going all the way to the size I was when I had David (17 years ago). I am two boxes down, with three left to go.
So I’m going to continue on in the gym, but I’m going to focus a lot more on my waist area, if that’s even possibly a thing (it must be). In January after the crazy eating month is over and hopefully we can start getting salads again (I haven’t been able to find one in the last two and a half weeks except at Dairy Queen, who gave me a chopped ice berg lettuce salad), I plan on tweaking my eating and maybe come up with a plan I can stick with. 🙂
Okay, that’s enough rambling about that. Y’all have a happy day!
Another two weeks have gone by. I have missed the gym twice because I was sick, coughing too hard to walk to the bathroom, much less on a treadmill.
I made some friends at the gym, a retired paramedic and her daughter. They come every weekday like I do, but they do their schedule differently than I do. I’ve been following theirs as much as I can do for the last 6 times I’ve been to the gym. They do an extended cardio every day (which I don’t because I get tired too fast) and also several ab/thigh machines every day (I have followed their lead here and it has paid off!). They are larger ladies than I am, but they are also so very much stronger than I am. The paramedic lady makes sure we are on-point with our posture and form, and is a good cheerleader for me and her daughter.
I am up three pounds, which is…what it is. I have been eating some Halloween candy, a habit I need to break. Other measurements are going better: I have lost an inch and a quarter off my chest, an inch and 3/4 off my upper waist, two and a 3/4 off my waist, 1/4 inch off my lower arm, 1/8 inch off my wrist, an inch off my upper thigh, and 1/4 inch off my ankle. Everything else remained the same. I plan on doing this update every second week until I hit my health goals, in case you are wondering.
Today I am not making it to the gym because I have two PTA/school events, a health coach phone call with my insurance company, a sick kid at home to care for, and more writing to do. I will try to get my cardio in this evening while I watch TV instead and will be back at the gym first thing tomorrow morning. 🙂
I have been to the gym every day except one in the last two weeks. That one day I had PTA stuff in the morning and then the computer died. I ended up cycling on my little floor-pedaling-machine thing for awhile in the evening instead (the kids thought that was hilarious).
So today is measurement day. I weigh about 9 pounds less than I did before, have lost 3 inches in my waist and a quarter of an inch just about everywhere else worth measuring.
I have been slowly ooching up on my weights on the machines and upping my time on the treadmill and have added some recumbent biking on my cardio days.
It is going well. 🙂
I realized that ages ago I said there would be a health update for the blogland people and I never got around to it (FB and real life friends bear with me).
So I have a lot of health issues going on right now. I’m going to post by condition:
- RA/Fibro: things are pretty even keel right now, which is fantastic!
- Migraines: apparently they are good right now, too, which is unexpected*.
- Anxiety/Depression: no worse than usual.
- Vasospasms: these are new. I thought they were migraines* at first, which delayed treatment for a long, long time. I’ve been having these weird episodes for 6+ years and one of my neurologists decided they were just another weird form of migraine, so that’s what we’ve been treating them as. I got a new neurologist and he says that this is not migraine-related, it’s a heart/brain condition that people usually get after they have a stroke. It’s a low-blood-flow-to-the-brain thing. In any case, I was put on a new medicine a month and a half ago and it was pretty terrible at first, I’m not gonna lie. It has finally started to calm down this last week or so after a month and a half of not being able to do much more than keep up with taking kids to school, laundry, and dishes. I feel like I have fallen out of my life and ended up here in this weird world where I just take care of myself and am not being a proper human.
- Thyroid issues: another new thing for me that might turn out to be an old thing. I’ve been having trouble swallowing off and on for many years. It feels like there’s a lump in there that I just can’t swallow past. It gets worse in allergy season when I have drainage issues, so the doctor really thought it was just that. But it wasn’t. Another doctor thought he felt a lump in there a couple weeks ago, so I had an ultrasound last week, and it turned out to be one large nodule and 5 smaller cysts of various kinds. The nodule is located in a place to be snuggled up against the big artery that connects *surprise, surprise* my heart to my brain, so there may be a connection with the vasospasms there. I am waiting to see what the endocrinologist says (once they call me about an appointment date).
That’s it for now. Let me know if you want any of that explained further and I’ll do so in the comments. 🙂
Last month when I saw the neurologist one of the things he told me was that I should be exercising more in my daily regular life, that exercise would help my brain get more blood and more blood is better, and so I should do it. (Did I ever finish blogging about that? If not, maybe I will next week. Life has been so weird lately) So last week I saw the rheumatologist and mentioned it to him and he said he was only limiting my exercise because I had so much pain and my hip was not good, but if I was feeling physically better in my hip, I could start exercising again.
So this morning I got up and re-joined the gym. I’m back at Planet Fitness because a) it is close by and b) it is a known substance. I made my way around the gym, discovered that I am the weakest person on earth, did the treadmill, and came on home. Whew, am I tired! But good tired, right? Yes. I will stick with that.
My plan is to go daily on weekdays and just skip the weekends altogether. Monday is Arm Day, Tuesday is Cardio, Wednesday is Core Body (abs, back, chest), Thursday is another Cardio, and Friday is Leg Day.
Lisa Holcomb 