I Don’t Know What’s Wrong

I’ve been thinking about doing this for months, and I don’t know why I put it off… Oh yeah, there’s that whole not wanting to get myself into a pity party. Ok, so I won’t.

This is for friends to be able to know what’s going on since I don’t get out much. It’s confusing for me, too, so don’t worry.

Let’s preface this. I’m married. I have 3 children—15, 10 & 5. I have a dog and two cats who all like to hang out and cuddle with me now that I’m not constantly on the go. We homeschool. I help care for my dad who is in a nursing home (used to do a lot more of that). I’m the office manager for my mother-in-law’s business (from home now).

I’m not dying, at least I’m pretty damn sure I’m not. Quick summary of the last year…

Last spring I had a few weeks of extreme fatigue, nausea (a weird different kind), pain in my abdomen, head pressure, and seemingly some heart issues. Chalked up to stress…? I had one-day bouts of the fatigue/nausea/head-stuff about once a month after that. October was all clear.

Then the weekend of Thanksgiving I began getting a head cold, but the fatigue came on with it, and other symptoms… I can’t even right now, let’s leave it at that. Is it strep? Is it mono? Is it a bird? IS IT A PLANE? It was nothing. And it lasted, with ups and way downs, basically forever.

When I saw the infectious disease doctor in January, they took all my blood, I mean for tests lol, and I was basically cleared of everything under the sun. She suspected autoimmune, of course.

To say this was a blow is an understatement. My dad has many diagnoses, several of which are autoimmune. (There is some speculation that everything he has is connected to autoimmune issues.) Highlights: pulmonary fibrosis, parkinsonism, early-onset Lewy Body Dementia (look it up). My mom used to think dying of cancer was the worst way to go (she lost her mother, brother and father to lung cancer), but now she firmly believes this is the worst. It doesn’t help that dad also has several extremely painful diseases on top of all that. So, I had maybe a day of freak out, with a couple of weeks of needing to be talked down.

(Keep in mind through this, that I still don’t KNOW anything about my own condition.)

Then my friends came through for me. Perspective is everything. A couple of truths I hold onto. I love my dad. I am not my dad.

Moving on. I’ve been seeing a cardiologist for about two months now, seems longer, maybe it is. He has said from the beginning that if I have the thing he suspects, it is secondary, and I’m looking at a genetic mutation or autoimmune (or both) as the primary. So many tests, and I’m still working on getting that secondary diagnosis—I keep landing in the grey area. (I did get some clear results from the tests. One fun thing, after a decade of avoiding antibiotics for the most part, I now have to take them ALL THE TIME—like I get my teeth cleaned, and I take them… there’s a valve in my heart that leaks, and horrible things can happen, I guess.)

In the meantime, I’ve been in process to get to a rheumatologist (and maybe a geneticist), and I finally have an appointment for mid-May. Neat. Doctors.

Almost 4 weeks ago I had a root canal re-treatment, and with it I had what’s called a “flare-up.” My tooth wasn’t really bothering me, but we’d been watching it for 4 or 5 years, and since last summer it would ache, just a little, once in a blue moon, but the x-rays weren’t changing, so I probably could have left it. BUT, I was trying to be responsible, you know, with my health. Whatever. The “flare-up” can last like 3 or 4 days. The worst of it (pain, crying, unable to sleep at night, etc) lasted 5 days for me, until I got a steroid. And didn’t I say 4 weeks up there? I still have inflammation, and it gets worse when I’m on my feet too much, coincidentally.

Some things I have learned, some of it from tests, some from experience. At my best, I’m functioning at 1/2 the capacity of a normal person my age. I take a super long time to heal from pretty much everything. Medications that I could take before, I cannot now. I am different.

Sometimes I have energy, but if it’s like spending money, I have way less income and an extremely tight budget. Sometimes I can push through things, but I’m likely to pay heavily for that.

What made me write this today? Well, I saw a field trip opportunity. On a boat on a lake. My favorite.

Yesterday I slipped downhill a little—some symptoms that had gotten better, suddenly were back. I don’t go to the store anymore, but I needed to get my dad a birthday card. Chris dropped me off at the front, I barely made it inside and to the cards. Shuffling my feet, stopping every so often—head, chest, throat—ick. I did it, though. Then I shuffled out while he paid. There was a man using a scooter (I should have), he put it away and walked out, obviously struggling a little with walking. He was going three times as fast as me at least. I got part way out and had to lean against a wall for a second. Got to a bench. Waited for Chris to bring the van to me.

This was not the life I envisioned, or the one I had a short time ago.

Last summer we went to NM, and I carried a 45-pound Bear on my back in a carrier up to a mountain lake. I’m bad at push ups, but really I was the only one strong enough to carry him without consequences. It was glorious. This year I made it to the zoo for Bear’s birthday and then to a museum in Arkansas—I made it, but in a wheelchair.

When I saw the field trip, I closed the tab, and started thinking, don’t be sad don’t be sad don’t be sad. The thing is, I’m mostly not sad. I love my family. Things are hard. But aren’t they for everyone? I have true friends, I mean, really true friends. I don’t feel abandoned. And actually even with all this including the unknown and uncertainty, I feel grateful.

I think that’s enough for today.


6 thoughts on “I Don’t Know What’s Wrong

  1. quilty2

    Listen Sweetie. I have an autoimmune disease too; like my Mom, like all my aunts, cousins, etc.. Doctors didn’t know what was what so I took it upon myself to research, search and search. I found out, after going Paleo and feeling better to great, that this helps me so much! I am not at the full blown Celiac stage, but gluten does me in.

    If you haven’t tried this way of eating (for life) I would so like to suggest it to you.

    Also, my sincerest condolences on the passing of your Dad. Been there, done that. It hurts still.

    1. lornabeth80 Post author

      I’ve been gluten free for 13 years! And yes, it definitely helped me a lot. I think I’ve been managing something for a very long time, but didn’t realize what I was managing. Gluten is bad news for me too.

  2. Elaine Nixon

    Lorna I just read the news of your Dad. So very sorry for your loss, my deepest sympathies to you and your family. I was also deeply touched by your health struggle. I understand. Years of my life were spent in the endless pursuit of finding the answer to why I was feeling so bad. Long story short I found out that I had the ‘moan, groan, bones and stones’ disease, i.e. Hyper-para-thyroid disease. Just had surgery and am cured, literally. Found that something that should have been size of grain of rice was big as an olive- so it was chronic. Also found Meningioma on my spine. Just out of surgery and am again-cured. My point to you is to keep trying, you are your best advocate. The only thing that I did differently was that I upped the ante with docs, meaning that I paid for concierge docs. I hesitated writing this, my intentions were to give you hope and strength to keep on with the fight, you are not alone. I wish you well… Elaine


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