Panic, thyroid, and medications

January 24, 2019

The thing about thyroid hormones is that they are needed for every part of the body to function. When you look at the list of hundreds of hypothyroid symptoms, you can see exactly what I mean. We need thyroid hormones.

It took too long for my hypothyroidism to be diagnosed. I am certain that the years-long delay in diagnosis and treatment led to some of the long-term damage to my body. Eventually I was diagnosed and put on medication.

Nine years later I did my own research and realized a lot of my ongoing health issues were untreated thyroid symptoms. I switched to a different class of medications altogether called Natural Dessicated Thyroid (NDT.) Instead of synthetic, human-made hormones, I was no taking pills formed from pig thyroid. You see, pigs produce the same thyroid hormones as humans, and in similar proportions. Many hypothyroid patients see huge improvement on these medications. Eventually I even got my father to switch to NDT and he also found improvement.

Things went well until several months ago. After years on Nature-throid I was suddenly hypothyroid again. What the hell?! I read on a hypothyroid blog that a lot of Nature-throid patients had seen a resurgence of symptoms since they changed their manufacturing process last year. At the time they swore they weren’t making any changes other than switching to a bigger facility. We’re now learning that there were changes to the ingredients after all, and that these were having unintended consequences for many patients.

I spoke to my doctor, who gladly wrote me a prescription for another NDT called NP Thyroid. But when I called the company that makes NP Thyroid I learned that it contains cornstarch. I react badly to corn. This would be a tiny amount but even so, I would eventually have issues with it. So we turned to compound medications.

The compound pharmacy is horrible. I won’t detail the issues now, but they suck at filling a prescription. I should have had this prescription last week but they keep having delays. My old Nature-throid prescription may not work well but it’s better than nothing so I figured I better get a refill, since the new compound wouldn’t be ready before I ran out of medication.

And then I got the call: Nature-throid is back-ordered until March. They don’t know why. No one has it. I asked around and learned more. The raw ingredients are back-ordered so it’s not just Nature-throid but all NDT medications! I even called a different compounding pharmacy and they said they can’t get their hands on it either.

SHIT!!!

So now I’m panicking, because I need my thyroid medication! And remember how I said thyroid hormones effect all parts of the body? Well, they affect mood, too. I have been more emotional lately due to being in a hypothyroid state. So while the issues with the compounding pharmacy are rightly upsetting me, I am getting even more upset than I usually would. I don’t have the capacity to properly react to things right now. This means I’m extra stressed out.

And ironically, the thing that is currently causing me the most stress is my inability to get my hands on the medication that would fix the problem that is causing me to be so emotional.

There aren’t a lot of options here, and things could get very bad. If I can’t get more NDT (I’m cleaning out every pharmacy that I can right now) then I will have to go back to synthetic medications. But those probably contain corn in the fillers and might not even be gluten-free. Not to mention, they simply don’t work as well as NDT. There’s a good reason I stopped taking them. But my thyroid can’t produce enough hormones on its own, so what choice do I have?

For any of you who take NDT, stock up now! Get extra refills if you can. Because the next few months could be rough for anyone with hypothyroid who takes these necessary, life-saving medications. And if you know anything about why this back-order is happening, please comment below or email me at msrants at gmail dot come because I would love to know.

Good luck to all of us. Let’s hope they bring our medication back soon. Because our lives depend on it.

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What is left to eat?

January 15, 2019

Any of you with complicated food restrictions will totally understand. Sometimes it feels like nothing is safe. Like the world is full of food landmines.

Seven years ago I figured out that gluten was a problem for me. Over the next 2 years I figured out a bunch of other foods I had to limit or eliminate. As my leaky gut slowly healed, I was able to bring back some of those foods, while acknowledging that others are gone forever.

For the most part, I don’t mind giving up these foods. I can deal with never eating gluten or corn again. Yes, popcorn used to be one of my favorite snacks. But it’s worth it if it means no longer feeling so sick! So in theory, things were good.

Groceries

Over the years, I have slowly figured out many places where I was getting trace amounts of gluten, and as I eliminated them, I felt better. These were things like sunscreen, moisturizer, lemon juice concentrate, and kissing my then-boyfriend. Some were easier than others to avoid. Let’s be honest, dating gets a lot harder when you have to tell someone at dinner on a second date that you can’t kiss them if they eat gluten – and you don’t even know yet if they were planning to kiss you!

Things were going ok overall until recently. Something is wrong. So far my doctors have thrown around ideas ranging from mitochondrial disease to some sort of yet-unnamed chronic infection to weakened adrenals that aren’t responding to the current treatment. I’m going to see new specialists. But I have also begun to wonder about what I’m putting into my body.

You see, my thyroid med isn’t doing the trick anymore and I want to switch brands, as many patients have recently had to do. The new one is gluten-free, but then just as I was about to get it from the pharmacy it occurred to me that it could have corn in it. It turns out, it does. Hmm. I asked my naturopath what she thought. She said it might be fine at first, but eventually it would probably build up in my body and cause problems. That makes sense. So I’m going to start a compounded medication next week instead.

But then I realized that I hadn’t checked for corn in my current thyroid medication since the manufacturing process was changed last year. And sure enough, it has an ingredient that might have been derived from corn. Yet I still have to take it until the new compounded medication is ready. Every day, I take it knowing that it could be making me sicker, but that I also need it to survive.

Then I looked some more. My vitamin C contains cellulose. So do a few of my other supplements. Huh.

So now I’m wondering if my malaise, fatigue, and brain fog could be from too much corn exposure. I know that small amounts of corn syrup in ketchup, for example, causes a problem for me. So this might be it!

But then just last week I was reminded of the many ways that Celiac Disease symptoms can appear that aren’t necessarily gastrointestinal. And at the same time I learned about some other places where I could be getting trace amounts of gluten exposure that I hadn’t considered before. These are harder to detect, like particles in the air when I’m in the home of someone who has recently baked with wheat flour, or produce in the grocery store that has gluten on it because another customer was touching it. How on Earth can I avoid those? I want a gluten detection service dog (yes, that’s a thing! And they are amazing!) but I am not healthy enough to care for a dog as a pet right now, sadly, much less to train a service dog.

So maybe I will take my new thyroid med and feel better and not worry about this other stuff. Except, even though some symptoms got a lot worse recently, there were issues before, also. So something else is going on. And while I am willing to try a new prescription for adrenal issues and to see the infectious disease specialist, wouldn’t it make the most sense to first eliminate all sources of the foods that I *know* can cause problems for me?

The problem is, I found a list of places where corn can be found, and it’s intimidating. Many of these are common (vinegar) or often found in gluten free foods (xantham gum.) I don’t know how careful I have to be, either. Do I have to avoid honey just in case the bees were fed high glucose corn syrup? If this were a gluten issue I would say yes, but for corn? Am I sensitive enough to need that level of scrutiny?

So now a lot of foods and medications I thought were Celiac-safe might not be and might contain corn that I didn’t know about, produce could be contaminated by other shoppers, gluten might be in the air, and no one knows what’s really safe and what isn’t. Ahhh!

It’s no wonder I’m stressed out about food. It’s no wonder I wish I could just take a safe nutritional supplement and never eat again. Food is a necessity in life, but it feels like a danger, too. Yes, I have to make sure my shampoo is both gluten-free and corn-free and that’s a real pain in the butt to do. Yes, I can’t wear the kinds of lipsticks I like anymore and it totally sucks. Those are emotionally hurtful in different ways. But food is something I can’t ignore. I can say I’ll deal with the lipstick issue another time, but food can’t wait that long. And that – how much I need that thing that has so much potential to hurt me – might just be the most frustrating part of all.

Unfortunately, my insurance will not cover a visit to a nutritionist, and I don’t know how much that would help me anyway. But I would love to hear from others who deal with this. If you have Celiac Disease or corn intolerence, please please please comment below and tell me how you deal with all of this, offer suggestions, or just let me know I’m not alone. It helps so much!


Winning the battle against my fears

December 22, 2018

I used to travel a lot. I flew to Florida twice a year to visit my grandparents, I drove to New York twice a year to visit my other grandparents. I drove to Maine many times a year to spend a weekend or a week in my family’s vacation home there. Sometimes I flew to another state to visit friends. On top of all of that, I would take one week long bigger trip to someplace I hadn’t been before. Yes, I knew how to squeeze every last hour out of my vacation days! (There were many exhausting long weekends!)

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My last trip overseas: London

That was my life before. Before my chronic illnesses became quite so disabling. I can no longer drive the 4 hours to New York. I have not been on a plane in 8 years. Eight years! I used to fly 3-4 times every year and now…. I feel stuck at home.

Travel opens up our eyes to new experiences and unfamiliar cultures. Without that, my world has been feeling very small. I first went overseas in college and I immediately got the travel bug. I have been to a handful of countries, with tons more that I want to see. There are also so many places I want to see right here in the U.S. But that requires flying.

I was never scared to fly before, but now I am. I’m not scared of terrorists or of crashing. I’m scared of triggering a flare-up of my health issues. I’m scared of feeling sick while trapped in the air. And it’s holding me back.

The first years of my self-imposed ban flying were absolutely legitimate. Flying would have been horrible for me. Even car trips to New York when someone else drove were hard. I barely saw my grandfather in New York in the final years of his life, and that was brutal. We spoke on the phone often, but still.

But I realized recently that it’s no longer my health that’s stopping me as much as my anxiety. Sure, there are health issues too, but I think that I probably could have managed some travel in the last year or so. It’s time.

So over the summer I promised myself that this fall I would go someplace I haven’t been. But I’m not ready to fly. If I can’t fly and I can’t drive far, that means taking a train. Trains are pretty good for me, and I will write a separate post about my experience with Amtrak’s accommodations for folks with disabilities. Still, they’re limiting. I chose Philadelphia. I’ve heard good things, I’ve never seen the city, and it’s a reasonable train ride.

Not long after this decision I began seeing a therapist, and she encouraged me to try flying as well. I want to start with a very short flight, so Washington D.C. seems reasonable. I flew there once many years ago (the times I drove) and it’s super fast. I figured I would go to Philly first, then DC later. If those went well, I could build up, and maybe finally manage to visit friends on the west coast, see the Grand Canyon, and more! Maybe I could even visit my friend in England! But first things first: a train ride to Philly.

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Last week I saw the Liberty Bell!

This was HARD! Buying the train tickets took a lot of emotional strength. It was difficult to find an AirBnb in the neighborhood I wanted that was on the first floor. I thought through every aspect of the trip many times: what medications to bring, how to handle food, how to manage my limited energy. I was ready. I had planned. But I knew that things could fall apart at any time without warning. Should I really do this? Maybe it was all a big mistake!

Less than a week before the trip I had a bad night. My adrenals crashed, which happens sometimes, and it’s the worst of my symptoms. I was nauseated, fatigued, weak. I was shaking, crying, and scared. And I panicked.

I started to think, not for the first time but definitely more strongly, that I should cancel the trip. That was the last day that I could still get a reimbursement on almost everything. I could have a quiet week at home. Things had been so hectic. I was planning for an event that week. Yes, I had planned a full 2 days between the event and the trip so that I could rest and pack. That was plenty of time. The event wouldn’t be that tiring, it just took planning. Still, it was overwhelming. I couldn’t manage. I could cancel the trip and stay home and get shit done around the apartment. That sounded really nice!

Thankfully, I had a therapy appointment the next day and she talked me down. I cried the entire time. I was crying before we even started talking. I was a mess of fear and anxiety. I had put a ton of pressure on myself, because if this trip was a failure, I knew I’d be too scared to try travelling again. But I WANTED to travel. And if I didn’t try, I’d never know.

After an hour of talking, I felt better. Not great, but better. I would do this. But I was still nervous.

The next day, I felt confident again. I could do this! What changed? One thing: I felt better physically. My anxiety gets much worse when I feel sick. That makes sense, since my anxiety is about being ill.

For the next few days I slowly got shit done. I wrapped up things at home. I told myself I didn’t need to do it all. I went to the event. I had many days of low energy and I let myself stay home and rest. I cut more things off my to do list. I kept it to the bare minimum. Now, a full week after I got home from the trip, I still haven’t done some of those things, and that’s ok! 

The day came. I had packed the day before. I didn’t need to leave until noon, something I planned very intentionally. And I did it. I got on that train.

I will probably tell you about the trip another time, but the short version is that it was great! I didn’t do nearly as much as I would have liked, even given my health limitations. One day I was fatigued and couldn’t go out much. One day I was in so much pain I could barely walk. Still, I did it. And somehow, miraculously, I didn’t have any adrenal crashes! Almost as amazing (and probably related,) I spent the last 2 days with friends who ended up getting very sick, and I never caught their bug. Incredible!

I came home feeling like it was a success because I traveled someplace new and my health managed ok. That makes me feel much better about getting on a plane to DC. Not great – I’m still nervous, and when the time comes I might panic again – but at least now it feels doable. And while my grandparents are sadly no longer alive, I have several cousins and close friends in New York, and in a few months I will take a train down there to visit them.

Yesterday I went to therapy and she eagerly asked how my trip was. I was happy to tell her about my success. But honestly, even just going was a huge win for me, no matter how it turned out. I was scared and anxious but I went anyway. I’m proud of that.


Goodbye food stamps

November 26, 2018

Edit 11/27/18: I must apologize to all of you wonderful readers for the errors in the original version of this post. As it turns out, the income limit for food stamps was not cut in half. The person on the phone didn’t know what they were talking about and the appropriate information was missing from their web site (both of these issues have been reported.) So that part is good!

However, I have still lost my benefits for now. The reason is that in determining the income limit, medical deductions are not counted. WTF?!?! My income had gone up, and I am now $20 over the limit. Just $20!!! However, my income has since gone down again, so I can resubmit paperwork to get my benefits reinstated. It’s a lot of effort, but worth it.

But think about how hard it was to learn this. I got a letter with misinformation. I spent 45 minutes on hold to speak with someone who gave more misinformation. I spent the night thinking my benefits were cut off. Then this morning someone called me back and explained it all. Why wasn’t that explanation put in the original letter?! The system is broken in so many ways. Not to mention the part where I lose $172 every month in benefits because my income is $20 too high. If they want people to get off benefits, this isn’t the way to do it, because this just encourages people to earn less so they don’t fall off the benefits cliff! Now back to the original post….

Benefits in the U.S. (and many other places) are majorly screwed up. Today I’ll tell you how I lost my food benefits, which I just learned about a few minutes ago.

When I first became disabled, I wasn’t eligible for the SNAP program (formerly called food stamps) because my assets were too high – meaning I had too much money in the bank. But then they changed that, and I was able to sign up. For 4 years I have received money every month to buy food.

The limits are strict. I can only buy certain kinds of food – nothing from the bakery, for example. And only food – no soap or toothpaste or toilet paper. Still, it helps a lot!

Until this year, I was getting the maximum amount for a single person in Massachusetts. It didn’t cover everything, which was worrisome. I’m small (around 125 pounds) and sedentary. How would someone bigger and more active manage on that small amount? Luckily for me, I have savings, so I used that to make up the difference. Friends of mine went to food pantries. Sucky, but that’s our system.

Earlier this year my benefits were lowered by $20. That sucked, but I knew it would go back next year when I filed my 2018 taxes, showing less income. It still surprised me that with my low income I wasn’t getting the maximum anymore. Again, a very messed up system.

And then yesterday I got a letter saying my benefits were getting cancelled. Part of the reason had to do with me not being disabled. Of course it was a weekend, so I had to wait. In the meantime, I did some research. New guidelines came out on October 1, but even so, I should qualify. So today I called. After 45 minutes on hold, I got someone. She didn’t know much and I had to keep correcting her. Finally, well over an hour after I’d called, it was 5pm – time to quit. She said she or her supervisor would call me back tomorrow. But I’d learned one thing: the income limit she used was half of what I was seeing online. I said that, and she couldn’t explain it. So after we hung up, I did more research.

In many states, there’s no asset limit, but in Massachusetts there is. Here’s how it works: if you’re not disabled, there’s an asset limit (about $2000.) If you are disabled, then there’s a higher asset limit (about $3350) but only if you earn more than a certain amount. If you earn under that amount, you can have any assets you want. If you earn over that amount, there’s an asset cap. A house doesn’t count. Cars don’t count. But money in the bank does count. I have enough in the bank to cause a problem if they look at my assets, but my income was always low enough that it wasn’t an issue.

And I’m glad for that money in the bank! It’s there for emergencies. It pays for medical expenses when there’s a month where they cost more. It will pay for my new car when my current car dies. It pays for a dinner out with friends once a month or a new sweater or two from the consignment shop. It’s what kept me from having to move in with my parents while I waited for over 2 years for SSDI to come through. I worked my ass off for that money in the bank. I spent my career working in nonprofit, which as we all know, doesn’t pay very well. And I was living in Boston, one of the most expensive parts of the country. Saving that money was NOT easy! I cut back on a lot of things to save that money. As my friend Rob said to me a few minutes ago: “You’re being punished for doing everything right except being able bodied.”

Because now that money in the bank counts against me.  But it shouldn’t.

You see, until October 1, the income limit was 200% of the Federal Poverty Level (FPL.) That comes out to $2023. That’s a tiny sum in this part of Massachusetts. Especially for someone who is disabled who could easily spend hundreds every month in health expenses. I was under that amount, so my assets were irrelevant. Then on October 1 they changed the income limit to 100% FPL. That comes out to $1012!

Think about that for a minute. In an area where a 1 bedroom apartment in lousy shape will cost at least $800 per month, the income limit is $1012. So if you earn $1015 and pay $800 for your apartment while you’re on a waiting list for Section 8 housing, you now have $215 to pay for food, medical expenses, transportation, and anything else in your life. It just can’t be done. So you have to dip into your savings. Let’s say your assets are just a bit over the limit, around $4000. How long do you think that will last you? A year if you’re lucky? Probably less. At that point you can now get on benefits. And if you have an problems where you need savings, you have spent them all and you’re now entirely fucked.

Or maybe you earn more. Maybe you earn $2000 and you have $10,000 in the bank. That’s plenty of money, right? Not really. It’s hard to live on $2000 in this area if you’re able-bodied. If you’re disabled, it’s not enough. You’ll have to take money out of savings each month. As soon as you have to pay for a car repair or two, or a couple of large medical expenses, your savings will be gone.

There’s no perfect answer. I get that. But to cut the income limit in half is cruel. To do so without warning anyone is heartless. To send out a form letter that doesn’t explain any of this and just cut off people’s benefits is both.

You know that safety net everyone is always counting on? Watch out, because the holes just got even bigger.


Will today be the day to go outside?

November 20, 2018

On the one hand, I knew that going out 2 nights in a row might be too much. On the other hand, I thought I might be ready for it. And how would I know if I didn’t try? So I tried. And it could have worked. Could have, but didn’t.

Now, it’s not like I was out clubbing until 2am both nights. The first night I went to play board games, and got home just before 10pm. That would have been fine, except because I was out, I didn’t take my melatonin, and so I felt too awake to sleep. I ended up going to bed at 1am and only sleeping 6 hours. Yikes!

The next day I rested all day, then pushed myself to go out at night. I recently began volunteering for an organization I really care about. I do small things from home and attend meetings once a month. So far, I had only been able to attend by phone, but it was important to me to attend in person. So I went. I was tired, but once I was there I felt good! Still, I hadn’t finished the dinner I brought with me, and the small appetite should have been my warning. I got home before 10pm, but slept badly.

I knew I was pushing my limits. During the meeting I would occasionally cough. Just one little cough every 10 minutes or so, not the kind you get when you have a cold, but the kind that means I’m not breathing well. That’s because my lack of sleep the night before meant I hadn’t used my CPAP enough. After a second night of poor sleep, my sleep apnea was really causing problems. I woke up the next day feeling really blah. Was it my regular autoimmune stuff? Was I coming down with a cold? Was my autoimmune stuff preventing me from fighting off a cold? Only time would tell. I did the smart but boring thing – I stayed home all day to rest. So much for the errands I wanted to run and things I wanted to do around the house.

The next day I clearly had a small cold. Damn. I canceled my date and stayed in. Again. More tv. I wished I was reading a novel instead of an interesting-but-too-much-brain-power-required nonfiction book. I felt sort of queasy after eating, but not in the usual way, or in a really sick way. More in a my-body-is-trying-to-do-too-much way. Weird.

The next day I still had a cold and was still having mixed results with food. Time for more rest!

And each night I was sleeping badly. I was congested from the cold, so I kept having to take off my CPAP mask during the night. You know what’s worse than not sleeping? Sleeping without my CPAP. It’s true. I’d be better off staying awake. Too bad I didn’t. The exhaustion was crushing.

Still, after 3 days at home I was feeling better. The cold seemed to have cleared up much faster than usual. I took a short walk! I washed my hair! I put the pajamas and towels from the last few days in the laundry! I wanted to run errands, but figured I should rest. Instead, I cooked a nice but relatively easy dinner. I was on the mend!

Except after dinner I felt a bit queasy. And by 8:30pm I was falling asleep on the couch. I slept on the couch without my CPAP for half and hour (d’oh!) and then went to bed, where I watched a movie on my phone for an hour and a half. Finally I was able to sleep. And for once, I shut off my phone. The new Android update makes it hard to shut off all sounds, and too often a ding or a ring comes through, so I shut it off completely. Then I slept with my CPAP for over 10 hours! I can’t remember the last time I did that. 9 is a lot, but 10!? Unheard of for me.

I woke up feeling somewhat rested. But still tired. Still run down. I didn’t get out of my pajamas all day. At one point I was going to. I took off my bathrobe. Then decided changing clothes was overrated and went back to watching tv.

In the past 5 days I have crocheted a bunch of stuff, finished the book I was reading, and watched a ton of tv. I haven’t gone grocery shopping, gotten a haircut, brought in my phone to be fixed (there’s a problem with texting that really needs to be addressed), booked an AirBnb for an upcoming trip (I’ll get to that in another post), or done a bunch of other stuff that really needs to be done. I WANT to do all of that, but I just haven’t felt up to it.

And then today I woke up feeling…. normal? Normal-ish? I don’t know, but I definitely feel more like myself. I’m tempted to try going to the grocery store. I really need food. And I especially need the food I promised to make for Thanksgiving.

But I haven’t left the house other than that short walk since Wednesday. Today is Tuesday. And someone is dropping their dog off tonight for several days of dog sitting. She’s a darling and fairly easy, but I’ll need to walk her before bed and again first thing in the morning. I should probably save my energy for that. I want to go outside. I really do. The snow is pretty and the fresh air would be lovely. But on the other hand, I’m still a bit tired, so maybe getting out of pajamas and taking a shower will be enough activity for today.

My friends get a cold and they push through, continuing to care for kids and pets, going to work, running errands. I wish they would stay home so they didn’t spread their germs. I’m the opposite: I got a cold so I stayed in and kept my germs to myself, then had to deal with the autoimmune fallout and was stuck at home for another 3 days – and counting! It’s just one more of the countless frustrations that come with chronic illness.


Wanting to do so much more in a day

November 4, 2018

It’s the constant struggle, isn’t it? Even my healthy friends want to do more than they can in a day. With chronic illness, the struggle is just that much more intensified.

Some days I can’t do anything at all. One day last week all I managed was to change out of my pajamas into a clean set of pajamas around 4pm, to browse Facebook in the morning and to watch tv and movies in the afternoon. Oh, and to eat. That was it.

Other days I do lots. Today I too a walk, went to the gym briefly, answered emails, did a couple random little things at home, wasted too much time online, and did part of my monthly financial review. Not bad! It’s just that I want so badly to do more!

And I never know which days will be which energy levels.

I look at my mother and wish I could keep up with her. She does so much in a day, and I wish I could do the same. I wonder how much I will (or won’t) be able to do when I’m here age?

I see my friends, who manage to do more than me in addition to working full time and raising kids.

It’s not fair to compare. I know that. Of course I know that. But still, it’s hard not to. Because I want to do more! I want to get all of my chores done so that I can do more fun things. I want to do more of the fun things. I’m so tired of doing one fun thing and then being too tired for anything else. I’m trying to make plans with someone this week, and I feel that I can’t see them Wednesday night because I have physical therapy Wednesday afternoon and doing both would be too much. I can’t see them Friday night because I’ve got a meeting Friday afternoon and both would be too much. I want so badly to do 2 things in one day.

So mostly I’m complaining because I’m feeling frustrated today. Because it’s only 3pm and while I’ve done a lot, I want to do more, even as I’m struggling to keep my eyes open. Literally. The sun is shining for the first time all week, and we’re about to get several more days of rain. I want to be outside enjoying it! I want to go out with a friend. I want to clean up my apartment. I want so much but my body has other plans. My body wants to rest. My body isn’t able to do more.

And so I am sitting on the couch, with the laptop on my lap, looking longingly out the window and feeling sorry for myself. It’s not helpful. It’s not productive. But it’s where I’m at. And this blog is called Chronic Rants, after all, so some days I just need to rant a bit.


Getting back to “normal” – whatever that is

October 15, 2018

I’ve missed you! This blog is one of many things that seemed to fall to the side as I struggled to keep up with the million and one medical appointments I had over the last month and a half. I kept wanting to write, but just couldn’t manage to pull myself together enough.

For weeks it felt like all I did was go to appointments. “What day is it? Well, I’m at occupational therapy right now so it must be Tuesday.” When you keep track of the days by thinking about what appointment you’re at, things have gone too far.

Thankfully, things began to slow down a bit 2 weeks ago. Unfortunately, right around that time I was feeling really fatigued. It made sense, given the physical and emotional stress of all of those medical appointments, right? Plus we were having unseasonably humid weather. I took more supplements. I pushed through.

It got worse.

I rested more. Watched tv. Read books. Let my chores wait and cancelled plans I had been looking forward to. I spent my time resting whenever I wasn’t at an appointment. It still got worse, and my stomach started to act up, too.

I thought about my diet. Had I eaten anything new lately? Some apples. But I made sure they were organic (a few autumns ago my stomach acted up and I learned it was the pesticides on the apples.) And I had only eaten 4 apples so far this season. I couldn’t think of anything else until a few days later when I was literally doubled over in pain, barely able to even walk from my couch to the bathroom. And then it hit me all at once: iron. I had started taking iron supplements.

The next day I stopped taking the iron* and by that night, I was doing a bit better. The next day felt even better than that. And now 4 days later, I feel back to normal! Whatever the hell that is.

I’m still tired. I’m in more pain than usual, mostly in my back, neck and shoulders. That’s from last week’s “rest” time on the couch, when I had horrible posture. I felt too bad to bother with it, and I didn’t do my physical therapy exercises either, plus my physical therapist had to cancel our appointment, and now I’m paying the price for all of that.

Still, I feel so much better than I did before, that I’m managing ok. And I only have 2 medical appointments this week! My friends would think that’s a lot, but you and I know better. After weeks of having 3-5 appointments every week this is nothing! And today’s appointment was only 12 minutes away, so there wasn’t even much driving involved. I had enough energy afterwards to go grocery shopping, then I came home and had lunch.

I am now sitting in cozy clothes, catching up on email, finally writing here, and generally feeling a bit more in control of things. It feels so good! In the back of my mind I think about how I still don’t feel up to dating, so I’m putting off signing up for a new online dating app that looks interesting, and I’m intentionally not thinking about how much I want a dog and am still not able to care for one. Ok, I think about it a little. But I try. Overall, though, I feel better physically so I’m trying to focus on the good stuff and ignore all of the things I want to do and still can’t.

Hopefully this week I can get back to having some balance in my life and in my schedule and then, well, maybe I can catch up on the many things I didn’t get to do over the last couple of weeks. After all, sick or not, some things still have to be done.

*In case you’re wondering about the iron, my doctor wants me to try taking a small dose. I was already taking 1/2 the recommended amount. We’ll see. About 5 years ago I had to have iron infusions because I couldn’t tolerate supplements. I was hoping to avoid that this time around, but no luck. I’m anemic so if the supplements don’t work, I’ll have to do the infusions again. But that’s a problem to deal with next week. For now, I’m focusing on getting back to “normal.”


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