Some symptoms I hope to “cure”

September 29, 2013

A couple weeks ago I wrote about wanting to improve my health. I’m hoping to start a new treatment soon, and there’s a good chance it could fix a lot of my symptoms. I don’t know if I’d consider it a cure exactly, but it should help.

The truth is, I can only guess at which symptoms are related to my thyroid condition, so I can’t be sure which could potentially be helped. And then of course, I don’t know how well the medication will work for me. But what gets to me is all the symptoms that could potentially be related to my hypothyroid that I didn’t know about. I figured my fatigue might improve, but by looking at symptom lists and following online patient groups, I’m realizing just how much else could possibly improve. So here’s my list of symptoms that I have reason to believe might improve on the new medication. I sure hope I’m right!

  • Fatigue
  • Joint point (some of my pain mostly likely isn’t related to the thyroid problem, but some of it could be)
  • PCOS
  • Raynaud’s
  • Foggy thinking
  • Pins & needles feeling in various parts of my body
  • Extreme sensitivity to heat and humidity
  • Sensitivity to cold
  • Difficulty regulating body temperature (once hot I stay hot, once cold I stay cold)
  • Dry eyes
  • Feeling like my arms and legs are dead weights
  • High cholesterol
  • High triglycerides
  • Heart palpitations
  • Digestive problems
  • Unusually dry patches of skin
  • Acne
  • Weight instability
  • Fluctuating sex drive
  • Memory troubles
  • Trouble concentrating
  • Tinnitis
  • Low blood pressure
  • Sleep problems

Of course, there are more hypothyroid symptoms. You can find some of them on this list. But these are the ones that I’ve got and that I hope might go away. Can you imagine? I can’t. I’m scared to think it’s even possible. But what if….? What if these went away/improved? What if I got better, even just partially? It could be incredible.

I have to wait several more weeks at least before I can try the new medication, and then it could take months before I know what, if anything, it will fix. But just having hope after so many years of having none is already an amazing gift. I sure hope it works. I hope that at least some of these get better. I’ll let you know soon….

My timeline for going out

September 25, 2013

2 weeks before event: put potluck in calendar

1 week before event: see potluck in calendar, see many other things in calendar, wonder if I’ll make itDinner

Sunday: thinking potluck is a good idea

Monday: figure out what to cook for potluck

Tuesday: feeling optimistic; buy ingredients for dish for potluck

Wednesday morning: stay in all day to rest up for tonight’s potluck – yay!

Wednesday afternoon: figure out timing for cooking and travel

Wednesday evening: cook dish for potluck, look up directions to place of potluck, start getting dressed for potluck

Wednesday evening, later: realize I don’t really want to go to the potluck; ok, I want to go, but not as much as I want to stay in my pajamas and watch tv all evening; yup, that’s what I want

Wednesday night: watch tv, eat the dish I made for the potluck, remember that I’ll go out another time, hope that some day nights aren’t so tiring for me, feel glad that I’m just feeling a bit tired and not feeling completely horrible like some other nights

Thursday will be another day with new opportunities.

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.

How important is your health?

September 23, 2013

I’ve been trying to help D with his health issues. After getting really frustrated last week by what I saw as his unwillingness to try harder to fix things, it suddenly occurred to me: I was projecting my own values onto him. I needed to figure out his values. So I came up with a little exercise. I found it interesting for myself, so I wanted to share it with you, too.

All you need is a paper and something to write with, or someplace to type, or a recorder to speak your answers into, or whatever else works for you. Now, answer these 4 questions:

  1. On a scale of 1 to 10, with 1 being the worst health you can imagine and 10 being the best health you can imagine, how do you rate your current health? By “current” I mean recent. Use the last 6 months or so, and just average it. Be honest, now. What’s your current health?
  2. On the same scale, rate your goal for health, being realistic. Let’s face it, some of us will never be a 10, but still, we want to reach as high as we can. What’s your goal?
  3. On a scale of 1 to 10, with 1 being not important at all and 10 being more important than anything else in your life, how would you rate the importance of reaching the health goal you just set? Consider the many things you may or may not have to give up: your favorite foods, your closest friends, your home if you need to move to a new climate, your favorite activities, etc. How important is it to you?
  4. Now, list out everything relevant to #3. Be thorough. You may want to reference this in 6 months or a year to reassess your priorities. List it all.

What do you think? Did you learn anything? In case you’re curious, here are my answers.

  1. 5
  2. 8.5
  3. 9
  4. I’d be willing to give up anything except my family and friends. Everything else is fair game if it means improving my health.

I ran these by my parents and they seem to think that my first two answers are pretty realistic. Of course, it’s all guesswork, but they know me well. On the other hand, when I did this with D, I disagreed with his answer to the first question. We got into an interesting conversation about how his good habits are helpful, but they don’t override the problems that he has. You may want to run your first two answers by someone close to you, also. The perspective is really helpful.

What are your answers? How do you rate your health and what’s your goal? Are you there yet? If not, how important is it to you to get there? I look forward to reading your answers!

Impatient for Improvement, Part 2: Stubbornness

September 19, 2013

Brain fog kicked in when I was writing my last post. I lost my train of thought and never came back around to something I really wanted to write about. Then fatigue kicked in and stopped me from proofreading my post. I hate to think about all of the typos, but by not rereading it I also never realized what I forgot to write. So here’s what I would have included:

There’s a danger in having such high hopes. The great thing is that it’s helping me to feel positive, to look towards a brighter future, to feel that there’s potential for and improved quality of life. But the downside is that it might not work. I could be completely wrong. My symptoms could be from another condition or from many conditions. Or maybe I’m right about the problem but for some reason it can’t be fixed. What then?

We all go through many stages of acceptance with our illnesses. I went through denial and depression and anger before finally accepting my condition. Then I got a new diagnosis and I went through it all again. Two years ago I thought there was no hope at all for improvement. I desperately hoped to find a way to slow down the progression, but I couldn’t find what it might be. I felt that what I had was permanent and would only get worse. Even remembering that now, typing these words, my eyes are filling with tears. It was a difficult time.

And then I took matters into my own hands. I read books, called medical professionals around the country, spoke to other patients, and slowly, very slowly, got an idea of what was going on with my body. That is what has brought me to where I am now.

My current status isn’t great. I know that. But I also know that it could be worse. It was worse. It was worse just two years ago. And that tells me that even if I can’t improve the way I want to, at least I may be able to prevent a backslide to where I was, at least for a while. It also tells me that even if I’m wrong about my current problem, I may be able to figure out another course of action. I may be impatient, but I’m also stubborn as hell. I get annoyed at how stubborn my parents and grandparents can be, but I also thank them for it. After all, they passed that stubbornness on to me, and it is what’s keeping me going, propelling me to move forward, and making me refuse to accept defeat from my illness.

I know I might be wrong about my current health plan. I know that. But I also know that I lived without hope for improvement for many, many years and I managed. I also know that in the long term I can keep a somewhat reasonable level of health; at least, it’s better than what I had before. Finally, I know that I will not give up in the long term. Sure, maybe I’ll give up for short periods of time, but overall, I’ll keep fighting. I’ll hold on to the stubbornness.


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.

Am I really ready to date?

September 14, 2013

I have a date coming up, and suddenly I’m not so sure if I’m ready to date.

I’ve written before about my insecurity around dating because of health stuff and about getting back into the dating world after a long absence. I’m trying to get over those insecurities, but that’s not what’s holding me back. Right now, the issue is the physical logistics of dating.

I’ve had a crush on this woman for a long time, and the other day I finally asked her out. And she said yes! I’m so excited that she said yes! She knows about my health stuff and has always been very supportive. She doesn’t mind when I cancel plans at the last minute or when I need to make accommodations for myself. She gets it, and she always tries to help. So it’s not like a usual date, where I have to worry about disclosing and how the person will handle it – she already knows, and she still wants to go out with me, so yay!

So you’re probably wondering what my problem is. Well, we started talking about when to go out, and I got a bit stuck. I’m sure at least some of you can relate. I need to have the energy to not only go out, but to put on a good face. She knows about my illnesses, but I still want it to be a fun evening, of course. So I looked at my calendar: big event Sunday, so I’ll need to rest Monday; Tuesday is ok and maybe Wednesday, but I have plans Thursday so that means Thursday night is out and probably Friday too; I have something big Saturday so that means I can’t go out Sunday; that next Monday I have an exercise class for people with pain in the late afternoon so I’ll probably be to tired to go out in the evening; I have a medical appointment late Tuesday afternoon so Tuesday evening is also probably out…. and so on. Not good. Luckily she’s free this Wednesday. That means my plans on Thursday will completely exhaust me, but I think it’s worth it. But if we both want a second date? I can’t imagine how we’ll pull that off.

Of course, then there’s the date itself. She suggested dinner and a movie, but she was very understanding when I explained that sitting in those cramped theater seats for two hours does bad things to my knees. And she even asked if dinner would be too difficult. I think I can find a good place for dinner, and afterwards we may see a comedy show. I’ve been to that place before, and the seats will allow me to stretch my legs, plus it’s easier to get up in the middle if I have to. But there’s still the issue of staying awake. I get sleepy earlier now. Staying out “late” is hard. The good thing is that even though I don’t work, she does, so I imagine that she won’t want to be out late on a Wednesday.

All of these logistics have me worried. Maybe I’m not ready to date after all? I’m hoping that being out with someone so understanding will help, but I also don’t want her to always have to be so understanding. I want us to have fun. I want to enjoy myself. I’ve liked her for a long time and I don’t want to screw this up. I’m going to try to focus on the main thing at the moment: she said yes! Hopefully the rest will work out somehow.

%d bloggers like this: