Getting taller thanks to physical therapy

January 27, 2019

There are so many topics I want to write about but they’re negative (I mean, the name of the site is Chronic Rants, after all), and I really need to focus on something positive today. So let’s talk about a surprising benefit of my physical therapy.

When I was a kid, my hands and feet were bigger than my mom’s, so we figured I’d be taller than her 5’2″. When I was diagnosed with scoliosis, x-rays were done to see how much more I would grow. The doctors predicted I would be around 5’3″. But as I grew, my scoliosis got worse and compressed my torso. In the end, I was only 5’1″.

2019-01-27 12.35.47

Now, being short isn’t the end of the world, but let’s face it, it can be super inconvenient. In fact, a lot of my neck pain comes from being short. Reaching up to get things off of high shelves, reaching forward for the steering wheel, sitting awkwardly in chairs because I can’t lean back and have my feet on the floor at the same time, and so much more can cause problems. I have even developed arthritis affecting the big toes in each foot as well as the start of bone spurs in those toes. My doctor told me to stop standing on my toes. Easier said than done! I stand on my toes to reach shelves in my apartment, to get things off of shelves in stores, and even to sit on a toilet (ok, I’m not standing on my toes, but they’re still at that angle, because I’m too short for my feet to be flat on the floor.)

And never mind my inability to find anyone in a crowd or see over the person who sits in front of me in a theater.

I go to a lot of doctor appointments (no surprise there!) and they often weigh me and measure my height. I range between 5’1″ in the morning and 5′ 0.5″ later in the day. I can be a little taller as I go about my day thanks to an extra inch or so from my sneakers or winter boots. Unfortunately, due to toes issues I can’t wear heels any more. It’s not like I wore them every day, and I didn’t wear super high heels, but once upon a time I would occasionally wear heels to work and enjoy being 5’3″. I would often wear heel to parties so that I wouldn’t have to crane my neck as much when I stood around talking to people. Taller folks laugh at that, but it really helps. But now, no more heels for me. For the rest of my life.

So I’m short. I don’t love it, but I’ve accepted it. It’s not like I have a choice. I’m not looking forward to shrinking as I get older, and I hope to minimize that with my physical therapy, but even so, with my scoliosis, I know it will happen.

So imagine my surprise when I went to a doctor appointment right after physical therapy and they measured me at 5′ 1.5″! I was thrilled. I know PT helps with my pain and discomfort. That’s been obvious from the start. And my current physical therapist is the best I’ve had. I travel way out of my way to see her. In the past, PT was 6-12 weeks, then sending me home to continue on my own. When my problems recurred, I was blamed for not consistently doing my exercises. But let’s be real here: sometimes they won’t happen. If I have a week where I feel like shit, where I’m too fatigued or in tons of pain or have a super heavy period, then I won’t do those exercises. And then when I resume them after a week or two, damage has already been done and I won’t be able to get myself back to where I was at before the short break. That’s not my fault, it’s just how my body is.

My current PT is different. She sees me every 1-3 weeks all year long. We space things out in a way to get insurance coverage throughout the year, meaning we make a lot of adjustments in the autumn based on how many visits I have left. This means I maintain a certain baseline that works well. If I come in with a complaint, she focuses on that, like this week when I had a lot of neck pain. If I come in without any particular pain, she focuses on general posture, loosening muscles, and straightening my spine.

And it must be working. For the first time in many years I have a lot less pain on a consistent basis. When I first started seeing her, I would come in with a lot of pain to every session. If I didn’t see her for 3 weeks I was in agony. Now, 3 weeks is usually doable. I recently had to stop seeing her for 6 weeks due to some family issues she was dealing with. By the end I had some pain, but it wasn’t too bad. I was amazed!

Obviously PT was working well for me, but getting that height measurement just put a number on it. She was pleased when I told her. But then something more surprising happened. A few weeks later I saw a different doctor and they measured me. This time I wasn’t coming directly from physical therapy. In fact, my last PT appointment had been 3 days prior. But when they measured me, I was 5′ 1.5″ again! I was floored.

I don’t know if this will last. I don’t know if it will even happen again. All I know is that for once, I have concrete, numerical proof that something I am doing is actually working. I’ll take it!

Now excuse me, because it’s time for me to do my physical therapy exercises.

 

Advertisements

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.


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!


Earwax: sometimes it’s the little things

January 10, 2019

It was one of those days. I had a checkup with my primary care physician and long list of things to discuss. In addition to all the stuff I know about, I feel like something else must be wrong. My naturopath thinks so, too. But I don’t like the possibilities! On top of that, it was earlier than I’d like. Still, I was determined to make it all work.

The plan was simple, but also overwhelming: get up early, get dressed, make lunch, eat breakfast, stop at the library, then go to my appointment. After the appointment I would pick up something from a friend, then go to another friend’s house to hang out for the afternoon. It would eat up all of my energy and I would be exhausted, but I felt it was worth it.

I got up early. I got dressed. And then things went south. I was awfully tired, and while I cut up fruit for part of my lunch, my hand slipped and the knife sliced my finger. Oops! The blood gushed and I rushed to put my finger under the faucet, then wrapped it in a paper towel that quickly soaked with blood. Not good. After a bandaid, I decided I didn’t need more fruit and put it in the fridge. I finished putting together the rest of my lunch, then moved on to breakfast, all the while wondering if I would need stitches. I really didn’t want to deal with stitches! I was already headed to the doctor’s office, at least.

As I left my apartment, I saw a woman walking a dog and asked to pet him. That helped a lot! When I got to my appointment I saw a message on my phone that picking up the thing from my friend got cancelled. Part way through the appointment, I got the message that my friend had to cancel hanging out. Which means I never had to make lunch in the first place! A couple hours later I was eating lunch at home anyway.

Things with the doctor went pretty well, though we ran way over time and still didn’t cover everything, which frustrated both of us. He looked at my finger which had, thankfully, stopped bleeding! What a relief! Then it was time to get the earwax out of my ears.

If you’ve ever had issues with too much earwax, you can see where this is going. I hadn’t had it done in at least a year, maybe two. When the doctor looked in my ear he couldn’t see my eardrums but that was no surprise to me. It was uncomfortable and sometimes it even hurt. I could *hear* the wax when I touched my ear and it moved. I had been looking forward to this.

Luckily, the medical assistant had time to do the ear irrigation. It took a lot of sprays with the solution, but finally the biggest chunk of wax I’ve ever seen came out of my ear. I mean, I’ve had big chunks of earwax come out before, but this was almost double the size of what usually comes out. How did it even fit in there?!?

And instantly my ear felt better. It felt empty. Clear. Clean. The discomfort was gone. The sounds were gone. Then she did the other ear and it felt just as good.

By the time I went to get my blood drawn I was feeling great! Sure, I’m fatigued and my thyroid med isn’t working properly any more and we think there’s something else going on but we don’t know what and I might have to start taking adrenal medications and and and…. but at least my ears feel better!

I suddenly had no plans in the afternoon. I put in my earbuds so I could make a phone call and was amazed at how well they fit. I didn’t realize they were uncomfortable before, until now they suddenly weren’t any more.

It was a shit show of a morning, full of blood, anxiety, and worry. But hey, at least my earwax got cleaned out. And that made it all a lot better.

Now it’s time to go research various doctors and medications that my doctor and I discussed because, as we all know, a chronic illness patient’s work is never done.


But did it help?

September 25, 2018

I go to so many medical appointments, sometimes I just take for granted that I have to go. But last week, after I wrote about having 13 appointments in just one month, I also mentioned it to a friend, and she asked me something that shocked me: were they helping?

It shocked me because I hadn’t thought to ask this myself! You would think that of course I’d be evaluating each appointment to see if it was worthwhile, but at some point, I just stopped doing that. I have gotten all too used to “follow up” appointments where the doctor reviews my symptoms, nods, and then tells me to come back in 4-6 months without suggesting any changes to what I’m doing. And often this is fine, because I feel like I’m on a decent course. Or because I know the treatments come with bad side effects that I want to avoid. Still, it’s worth taking a step back every now and then to ask,

Is this working?

Is this worthwhile?

I’m glad to say that in the case of this hectic September, the answer is a resounding, YES! The hand therapy has been making a huge difference. My sleep doctor suggested one small change that has had a big positive effect. My naturopath offered me some hopefully changes. I haven’t seen any changes from my new therapist, but it’s early, and there’s nothing negative, so I’ll give it some time.

This means that what I’m doing is working and it’s worth it. At least for now.

Still, 13 appointments in one month means very little time to relax, to deal with household chores, or to have fun with friends. And it’s really getting to me. I’m looking forward to one day soon actually being able to do those things again!

In the meantime, take a step back and ask yourself, are all of those appointments helping? I hope the answer is yes but if it’s not, it might be time to ask yourself how to change that answer. (Obviously I’m not a medical professional and I’m not suggesting you stop seeing your doctors even if you’re not seeing positive results right now. Use your own good judgement!)


Too. Many. Appointments.

September 17, 2018

I laugh whenever a benefits form asks if I’ve had any medical appointments in the past 6 months. Are you kidding?!? Of course, some months are busier than others. When I only have 1-3 appointments in a month, it’s freeing! I can do more things for fun, see friends, get stuff done around the house. And then are months like this one. By the end of September I will have had 13 appointments. THIRTEEN! This is not cool.

Some of it is coincidence. I only see my naturopath every 3-4 months and I’m seeing her this month. I only see my sleep specialist twice a year, and I saw him this month. There’s also the problem that I’m currently in hand therapy twice a week for painful tendonitis. We had to skip a week and a half for scheduling reasons, but that’s still a whole lot of appointments.

On top of that, I started seeing a therapist once a week. After a bit that will change to every other week, but it hasn’t yet. The idea was that hand therapy would end in August, so September was the right time to finally try seeing a therapist. And then hand therapy got extended by another month. Oops!

calendar-1990453_1920

Physical therapy got put on hold due to my PT moving to a new home and a new office at the same time, followed quickly by a planned heart surgery for her husband. It was good timing for me in terms of my hand therapy and other appointments, but I’ve been feeling my scoliosis acting up, among other issues, so I have an appointment to start seeing her next week, now that she’s scheduling patients again. I haven’t seen my dentist in about a year (oops!) so that will be next week also.

These are all important. They’re also TOO MUCH!

I’m exhausted and overwhelmed. I try to make plans with friends, but can’t manage anything on a day that I have an appointment, and that means we never get to hang out. Running errands, cooking, and laundry all have to be scheduled around these appointments, too. Benefits forms aren’t getting filled out and craft projects are being abandoned. You haven’t even seen me here on this blog lately!

For now I am just trying to hold on. I only have 1 appointment in October so far. All of the doctors I see only once every X months have been scheduled for other months. I haven’t scheduled therapy or PT for next month yet, so those will happen. Still, with any luck hand therapy will have ended and I might have only 5-8 appointments next month. I can hope!

People ask, “What do you do all day since you’re not working?” Little do they know how much work it is to take care of my health! This month is worse than usual, but still, appointments, benefits forms, pills, special food prep…. it all adds up in a big way.

I’m looking forward to having some more breathing room soon. In the mean time, I hope that you all are doing better on the appointment front than I am!


Wishing someone would tell me what to do

August 20, 2018

When I was a kid and I didn’t feel well, my mother would bring me a cool cloth for my forehead, some children’s Tylenol, juice, and toast. She took care of me. She told me to rest, to watch tv, to read a book. She told me if it was severe enough to go to the doctor. I didn’t have to think.

It’s not like that as an adult. Now I have to take care of myself. I have to remember to take the medicine, to rest or not, to buy juice at the store. Of course I miss having my mom take care of me when I’m sick, but mostly I manage those things ok. What I miss the most, though, is someone else telling me what to do. Making the big decisions.

Sure, I still struggle sometimes with when to take the Tylenol when I have a fever, but that’s not such a big deal. The harder piece is choosing which treatment approach to take with my chronic illnesses.

I have a long list of illnesses of course. And just when I think I know where to focus my attention, one of the supposedly not-so-important illnesses taps me on the shoulder, winks, and then pushes me down a flight of metaphorical stairs.

Like my PCOS. Everything seemed to be just fine, and then I got a period so heavy that my doctor told me to go to the emergency room due to the blood loss. Then I became depressed for several weeks as my hormones did wacky things. Not fun. I was already considering trying a new way to manage my PCOS, but that episode made it clear just how necessary a new plan was.

Now I have seen 4 medical practitioners who I trust a lot, and I have 4 potential treatment approaches. And I don’t like any of them. I desperately want someone else to tell me what to do.

You see, most people just take birth control pills and they’re fine. The problem for me is that birth control pills make me incredibly sick. Since those aren’t an option, I need to find something else. (Sometimes Metformin is prescribed. I tried this once and immediately had an allergic reaction, so that’s not an option, either.)

It’s easy to knock out 1 approach right now: the one I’ve already been doing. It worked great for many years but has recently become ineffective, so that has to go. But what about the other 3? They each seem reasonable, but which to try? Each of them has the potential to make me feel incredibly ill, so I’m not anxious to try any of them, but not doing anything isn’t an option. Each doctor makes an excellent case for each approach.

I will try one, and if I don’t immediately have horrible side effects, it will take months to know if it works. So it could take a year or more to find a treatment that works. If any of them do.

I want someone to tell me: do this. Simple. Easy. But that isn’t an option, either. So I will continue to debating, to research, to question. And in the end, maybe I will make the right choice and maybe I won’t.

These decisions are complicated and difficult. Sometimes the choice is obvious (though still not easy) but often it’s not. And no one is going to make it for me.

In case you’re curious, here are my current options (from an endocrinologist, a naturopath, a women’s health nurse practitioner, and a gynecologist – clearly I’m not limiting my sources!):

  1. A progesterone compound. I feel sick when I take it and it no longer works effectively to give me a predictable cycle.
  2. A supplement called Calcium D-Glutarate. It should help balance out estrogen. This appeals as an easy thing to take that can be easily stopped, but I’m concerned about what it does. It lowers estrogen, and the other practitioners say I need to increase progesterone and estrogen and/or lower testosterone, so I’m not sure this is the right approach for me.
  3. Progesterone cream. It’s harder to dose and I have to be careful to not damage my skin. It would hopefully fix my cycle but not the other symptoms so I would have to take spironolactone. This makes me nervous because it’s a blood pressure medication and my blood pressure is already too low.
  4. An IUD. This makes me nervous because if I have a reaction, I can’t quickly remove it myself. Again, I would need to take spironolactone in addition.

If any of you folks with PCOS have tried any of these things, I’d love to hear about your experiences! Maybe you can help me make an informed decision. Because I’m not having much luck so far.


%d bloggers like this: