When a treatment actually works

September 24, 2013

I was really nervous at today’s appointment. I followed the doctor’s instructions, but did it work? What if it didn’t? What if my levels went up but not enough? The numbers ran through my head: 100 or more would be great! 70 would be ok, I guess. But what if it was only 50? What if it was lower? But first, let me give you a little context.

I’ve had low ferritin (storage iron) levels for as long as I can remember. I’ve been going through my old medical records, and the other day I found a low test from 10 years ago. I tried oral supplements, but they bothered my stomach. I tried different pills, but they didn’t work either. I tried eating more red meat, but that didn’t work. Doctors have said I should address it, but no one has sent me to the right specialist.

I’m anxious to move on to a new treatment for what I consider to be my biggest source of problems right now, which is my hypothyroid. The thing is, from what I’ve read, the hypothyroid treatments just won’t work well enough, and they could even cause problems, if my ferritin is too low. So I had to fix it.

The hematologist suggested I get iron infusions. Instead of taking pills of 30mg or so of iron, I’d get 2 infusions of over 500mg each. That’s a lot of iron! I figured I better try it, since nothing else had worked. As instructed I got the first infusion, waited a week, then got the second one, then waited 4-6 weeks to retest. Waiting was brutal, but I had no choice.

The doctor said that many patients begin to have more energy within a few days, and certainly within a few weeks, after the second infusion. Someone I know who did this said the same thing. She was excited for me that I’d feel so much better. But I didn’t. I felt nothing. I felt the same. So I worried that it didn’t work. And I kept worrying, because I had no way of knowing. Until today.

The range is 13-150 for women (though my doctor thinks this range is off, but that’s a discussion for another day.) For a woman getting her period, it should be around 70. For a woman with inflammatory issues, which I clearly have, it should be over 100. Before the infusions, my tests were anywhere from 7 to 26. The last was 22. Obviously 22 was not good.

And that’s how I ended up at the doctor’s office today, very nervous about my latest test results. Thankfully he had a cancellation, so I was able to worry for 9 fewer days than I’d originally planned. I sat in his office, waiting for the numbers to come up on his computer screen, thinking about all of the possibilities. Until today, I hadn’t realized how pessimistic I really was. The truth is, after all these years of illness and failed treatments, I guess I now expect treatments to fail. After all, that’s usually what happens. So when he told me the result, I was speechless: over 600! Wow! Even the doctor was shocked. He had said this could happen, but it’s very rare, and given my background he really didn’t expect it.

I’m a little worried about that high number, but the doctor assures me that my body will get rid of the extra ferritin on its own. Still, I’ll do my own research because I’ve learned over the years not to blindly trust doctors with my health. But still! Wow!

I think that this success has done three things for me:

  1. It has fixed my ferritin problem, at least for now (I may need another infusion in the future.)
  2. It has allowed me to move forward with my hypothyroid treatments.
  3. It has assured me that standard, prescribed treatments can work for me.

It will take a long, long time for that last one to sink in, but I hope it does. This is so huge! For the first time in a long time, a treatment worked. And maybe, just maybe, it can help me regain my health.

8 Comments | Educating, Expectations, Fatigue, Medication, Milestones, Raves, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Impatient for Improvement

September 17, 2013

I vaguely (damn brain fog!) remembered writing something about wanting to get better soon, so I looked through recent posts and found this one. It’s hard to believe that was only a month ago. I feel like so much has changed, even while it’s all stayed the same.

In that post I wrote about a recent increase in energy. Unfortunately, that didn’t last. After several glorious weeks I had a physically difficult treatment, had several bad days following it, and never got that energy back. Still, I’m feeling fairly optimistic. That when attitude has really taken over my entire perspective.

After many, many years of symptoms, I’d gotten good at understanding my body, but recently it’s gotten to a whole new level. I’m more aware than ever of body temperature changes, heart palpitations, joint stiffness, and other smaller symptoms that I used to ignore. I’ve gotten a really good sense of what’s happening with my body.

On top of that, I’ve been reading! Thanks to my local library, I’ve read a bunch of books about what I now believe is the main cause of most of my serious symptoms: Hashimoto’s Disease. I believe that Hashimoto’s caused my hypothyroid, and when the hypothyroid wasn’t properly treated it led to adrenal insufficiency, low iron, and other issues. For once, I think I know what’s wrong. And even better, I have an idea of how to treat it!

The thing about treating hypothyroid is that the secondary issues (low iron, adrenal insufficiency, vitamin and mineral depletion) must be treated first or else the thyroid treatment won’t work and it could even make symptoms worse. I’ve been working on fixing those secondary issues for a while and I think I’m getting close. I will have tests done next month that will confirm if I’m ready to begin the thyroid treatment, which is very different than the thyroid treatment I’ve been taking for many years now. It’s possible those tests will show I’m not ready to start this new treatment, that I need to work more on the secondary issues, but it’s also possible that I’ll finally be ready to start something new and promising!

So every day I continue to read books that make it sound like this new treatment (or one of the alternative treatments) could do wonders for me. I participate in online patient groups where others talk about how much better they feel after just a few weeks or months (or sometimes even days) on this treatment, after getting off of the one I’ve been taking. I see what could be for me, and I want it so badly! It’s right there, sitting on my dresser. Literally. I filled the prescription already so that it will be ready as soon as I get the test results. (I didn’t want to take a chance of having any last-minute insurance issues or anything, so I filled it as soon as I got the prescription.)

Patience is a virtue that I’ve never had. Hey, no one’s perfect. We all have our faults, and mine is that I’m impatient. But this is a whole new level. It’s one thing to be impatient to get a new cell phone, try a new restaurant, or complete a project. But a return to health* would be HUGE! On the one hand, I’ve waited for years, so what’s a few more months. On the other hand, I’ve waited for YEARS so why should have to wait any longer? I’m ready to be done with the waiting part. I want to be on the doing something part. Sure, I’m doing something by researching and making plans, but I see that pill bottle sitting on my dresser and I’m so impatient to try it. Just try it. Maybe it will work. Maybe, a few months from now, I’ll feel better. Maybe I won’t be sitting home more days than I’m going out. Maybe I won’t have to turn down invitations to go out at night. Maybe I’ll be able to go back to work and earn an income again. Maybe I can feel mostly ok. Or maybe not, but I’d like to at least try.

So for now I’m waiting impatiently to at least try to improve. In 5 or 6 weeks I’ll have all of my test results and I’ll know, one way or another, if I’m ready to move on to this potentially exciting next step. Please send good thoughts my way – I need all the help I can get!

*Like I’ve said before, I don’t expect to ever be 100% healthy again, but I do think I could be much, much better than I am right now.

4 Comments | Decisions, Expectations, Fatigue, Frustration, Healthcare, Limitations, Medication, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

What do I do all day without a “job”?

September 7, 2013

I have been asked over and over again what I do with my days since I don’t “work.” I understand where they’re coming from. I guess I used to wonder the same kinds of things. Now I realize how absurd that is.

First of all, I do work. I have a job: my health. I don’t get paid for it, but it’s my job. And it’s harder than any paid work I’ve ever done.

Several years ago I quit a job where I was unhappy. Suddenly I had so much free time! I learned new skills, Atlanticimproved my diet, got into a good exercise routine, went out many nights with friends, spent more time with family, traveled… it was a great time and I hated to go back to work. The thing is, I felt good then.

It’s not like that now. Now, I can’t do half of what I did then in a day. Now, I have to rest a whole lot more. I spend more time in bed. I read more. I want to go out but can’t. I spend huge amounts of time planning out my meals, pills, and other health-related stuff. And that’s before we talk about the paperwork.

Right now I’m hiding from the work. I’m writing here because the rest is too overwhelming. I should really be doing one of these (though some can only be done on weekdays):

  • Reading one of the five library books I have out on hypothyroidism.
  • Filling out one of the two forms that the long term disability insurance company sent me.
  • Contacting my lawyer about the next steps in the long term disability insurance application.
  • Trying again to fix a dental insurance status issue.
  • Figuring out if a medical appointment I had last month will be covered by my current or my old health insurance.
  • Filling a prescription.
  • Making an appointment with a new primary care physician (pcp).
  • Changing my health insurance over to a new pcp.
  • Making an appointment with a resident in the new pcp’s office so that I can get referrals for specialists with whom I already have appointments, since I’ll need the referrals before I’m able to see the pcp.
  • Entering recent lab results into my tracking spreadsheet.
  • Creating a new tracking spreadsheet for daily symptoms.

Of course, in addition to paperwork, I also spend a lot of time and energy around food. I have to figure out what to eat that fits in my diet, 20120917_181648what I’m able to prepare given the weather (I can’t use the oven all summer and I can’t use the stove on the really hot days,) and how to time my meals. Today I’m supposed to have lunch with my parents, but they want to eat around 1:30. That would mean I wouldn’t take my lunch pills until 2, and then I’d need to wait an hour before I could take my 2pm pills, so they’d have to wait until 3pm. That’s no good. So I have to eat earlier on my own. And of course, that doesn’t even include the time spent taking pills. Then there’s the 20-30 minutes I spend each week preparing my pills by filling my weekly pill boxes. Buying the pills also takes time, but that feels like a whole different level.

There’s always more reading and research to be done. I follow patient groups online, a few useful blogs, twitter, and I also read books from the library.

Up to now I’ve been talking about the health-related work. There’s still the everyday work. Cooking, dishes, and laundry exist in my world just like they exist in a “healthy” person’s world, but they take a lot more energy for me. Doing laundry and going grocery shopping in the same day means I can’t do anything else that takes much energy, and some days I can’t even do that much. Going out with friends means I have to rest the next day. For me, “rest” usually means not leaving my apartment. I stay home and read a lot. I watch some tv. I check Facebook. But I don’t go out or do anything strenuous at home.

And by the way, don’t forget that I spend 10-11 hours in bed each night. I figure this isn’t too bad, since I know people with similar conditions often spend many more hours in bed. Still, when you compare this to others my age who only spend 7-8 hours in bed each night, you can see that I lose 2-4 hours of “productive” time each day. I also need to rest after each meal. I’ve learned that if I eat and then immediately try to do something heroic, like put the dishes in the sink, I feel really horrible. Instead, I sit for at least half an hour after each meal. I use that time to watch tv and knit. It’s not exciting, but it works.

Then there are the medical appointments. Some weeks I don’t have any, others I have more than one. They are exhausting. They are physically tiring and emotionally wearing and I have no choice but to go to them. I also leave the house for errands, because even ill people need to buy groceries and toilet paper. On a really good day, I take a 10-20 minute walk. I wish I could do that every day.

Like others, I have hobbies. I would like to spend more time on them. But they require energy, even just small amounts. Most days I have to choose between my hobbies and doing my physical therapy exercises. Given that choice, I have to do the physical therapy. There’s a project I haven’t been able to work on in several months because I just don’t have the time and energy to do it.

Finally, I do want to have a social life. I can’t do it often, but I socialize when I can. I spend time with my friends. I spend time with my family. I occasionally go to events. When there’s the chance, I date. But I can only do one big thing per weekend (I may not be working, but they are, so these things are always on weekends.) That means my calendar is already booked into October. If I go to a wedding on a Sunday, I know I can’t do anything the day before. If I go on a picnic on a Saturday, I know I’ll be resting on Sunday. This is incredibly limiting, but I have no choice. I’m just thankful if I can go to those events; very often I can’t.

No wonder I haven’t had the time to buy new glasses. I’m too busy not “working” at a “job.”

If you can relate to this, please pass it around to your friends and on social media. I’d love to help more people understand that not having a paying “job” doesn’t mean we’re not working.

13 Comments | Educating, Expectations, Fatigue, Frustration, Isolation, Limitations, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Finding the sweet spot for sleep

August 28, 2013

I don’t know about you, but sleep, and lack of it, has always pissed me off.

When I was a kid, I hated bedtime. I was never tired. I would stay up reading for hours. Sometimes I would hide 20130828_171154under my covers with a flashlight and read until 3am. I just wasn’t sleep.

As an adult with all sorts of health issues, that’s just one of my sleep problems now. Sometimes I’m not sleepy at bedtime. Sometimes I fall asleep without a problem, then wake up complete at 3am. Sometimes I sleep for 10 hours and wake up feeling as if I hadn’t sleep much at all. I almost never wake up in the morning feeling rested. Still, I’ve recently had some success in the sleep department. It both surprises and excites me, so I’m hoping to continue it. Sometimes I’m sleepy at bedtime. I’m not waking up as much during the night. I wake up feeling tired, but that goes away with an hour or two. So I’m not there yet, but I’m enjoying the progress I’ve made so far.

Here is what works for me (in no particular order):

  • The room must be cool, bordering on cold. I use an air conditioner through most of the summer, fans are on all year round, and sometimes I open a window even in the dead of winter (and remember, I live in Boston, so our winters aren’t warm.)
  • I keep the room fairly dark. Of course, the shades need to be open if the windows are (so I can get fresh air, and also so they don’t make noise while being blown around.) For the light that gets in, I cover my eyes. Wearing a sleep mask helps a lot.
  • White noise is a must. When the air conditioner is on, that’s plenty of noise. In the fall, winter, and spring I use an app on my phone. This has made a huge difference for me. It helps to block out the city noises outside my window. Sure, I still hear the garbage truck in the morning, but the screeching of brakes and drunken yells during the night from the sidewalk don’t bother me anymore.
  • I have a bedtime routine. Getting undressed, brushing teeth, etc. all happen in a certain order. This cues my body that it’s almost time for sleep.
  • I wear as little to bed as possible. Most nights I just wear underwear (if that.) I find that clothes make me too warm. They also get tangled when I roll around in my sleep, and that wakes me up. If I must wear clothes, I make sure they’re as comfortable as possible.
  • My bed is really comfy. I have a great mattress and spring board, soft sheets, and blankets that are the right amount of warmth for each season. I spend more than 1/3 of my days in that bed, so I want it to be fantastic.
  • I read before bed every night. Some nights I read a lot, other nights I fall asleep after a paragraph, but I always read. I’ve found that if I don’t read, my mind wanders to things I did, things I need to do, people I need to talk to, problems I have to deal with, etc. Sound familiar? Reading is a great distraction, but it has to be the right reading. Personally, I can’t read books about health stuff before bed because I get upset or my mind starts churning. For me, light novels are the best bedtime reading material.
  • I moved around my supplements. I now take my zinc and magnesium in the evenings and at night. I heard about this from other patients and I think it has helped.
  • I avoid screens before bed. No tv, no computer, no cell phone. They say to avoid these for at least an hour before. I’ve found tv is ok until near bedtime, but I need to avoid the computer for at least an hour beforehand. This isn’t just because of the effects from the light of the screen (though that too) but because I get sucked into interesting articles, feel tempted to read just a few more Facebook status updates, want to answer some emails, and too much time goes by and I stay up too late. Plus, the things I do online tend to get my mind churning and sometimes my bedtime reading isn’t enough to stop it. I’ve found that tv is ok, and books are best in that final hour.
  • I went to a sleep clinic and met with a great doctor there. He suggest I take low doses of melatonin to help me get sleepy at night and to use a blue light in the morning to help me wake up. These have worked really well, though I’ve found that if I take melatonin too often then I’m drowsy the next day. Still, it’s a huge improvement.
  • Food and water make a huge difference. Thanks to a strong bladder, I never wake up during the night to pee. I drink a lot right before bed so I’m not thirsty during the night. I also mentally check in on my stomach a couple hours before bedtime. If I’m not entirely full, I have a snack. That way, hunger won’t wake me up, either.
  • I don’t eat close to bedtime. That definitely messes up my sleep.
  • An exception to the last one: I take a couple sips of orange juice before bed. This is new. I read that if you have adrenal fatigue (which I do) and you wake up around 3-4 am (which I often did) then you could be dealing with a drop in glucose levels. OJ helps with this. So far it’s working. I’ll have to see how that goes.
  • I set my phone to not show any blinking lights at night for text messages, phone calls, etc. That way if for some reason I do wake up and take off my sleep mask, I won’t be tempted to check my phone. I keep it near the bed for the white noise app and so I can check it when I wake up, but I don’t want to check it during my sleep times and this helps.
  • I have a clear rule for all friends and family: no phone calls or texts before 9am unless it’s a true emergency. If I’m really in dire need of extra sleep then I shut off all phone sounds. Otherwise, I leave it on knowing that if I get a call before 9am, it’s probably either an emergency or a doctor’s office/lawyer’s office/insurance call, and I want to get those at any hour.
  • When I’m mentally stuck on going to bed, I remind myself of everything I did that day. That way I remember just how many hours I’ve been awake, and going to sleep doesn’t seem so bad. I also remind myself of everything I want to do still that night, and how much easier and more fun it will be to do those things after I get some sleep.
  • I go to bed around the same time every night. I wake up around the same time every morning. That really helps!
  • I’m treating my adrenal fatigue, which is getting my energy levels where they should be. I’m not there yet, but I’ve definitely improved. This means that I’m getting sleepy at night more easily and also that I’m sleeping better during the night.
  • When the pain is sort of bad, I read as a distraction. When it’s really bad, I watch one of my favorite old movies. If the pain subsides enough after meds kick in, I’ll fall asleep in front of the movie. I’ve seen it enough times that I don’t mind. After an hour or two I’ll wake up and go to my bed (the tv is in the living room.) If the pain is completely unbearable, I don’t try to sleep. Some nights it just won’t happen, or at least not much, and that’s ok. I don’t feel bad about it. I just try to get back on track the next night.

You probably noticed that some of the things that work for me are pretty standard in any sleep advice lists, such as having a sleep schedule and avoiding computers before bed. Here are a few more I’ve read about that might be helpful if you’re having sleep issues. Of course, I’m not a medical professional, so definitely get advice from a professional if your sleep is a real problem.

  • Write a list of positive things that happened to you that day. This is good for clearing your mind and also as part of a bedtime routine.
  • Meditate.
  • Avoid alcohol, caffeine, and nicotine for several hours (at least) before bed.
  • Avoid naps during the day as much as possible.
  • Exercise every day if you can.
  • Time your exercise so that it works for you. This usually means avoiding exercise for a couple of hours before you want to go to sleep.
  • Consider who you’re sleeping with and what changes you might need to make. Ask a partner to avoid watching tv in the bedroom, insist your pets sleep someplace else, etc.

We all know that sleep is important for our bodies to heal properly, but that doesn’t mean that it’s easy to achieve. This is a really tough area for many of us. In fact, this post was inspired by the Twitter conversation by WegoHealth yesterday (#hachat) Check it out to see what others are saying.

So tell me, what works for you?

3 Comments | Educating, Expectations, Fatigue, Frustration, Limitations, Medication, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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