The incredible amount of time spent on health stuff

April 23, 2013

Phone keypadI’ve been meaning to keep better track of my health stuff. Now, a friend is trying to convince me to write a book about this disability insurance bullshit that I’ve been dealing with. I’d already been thinking about it, but I’m just not sure. Still, in case I do it, I should keep better track of things. So today I started noting the basics. Of course, this doesn’t include the huge amount of time I spent thinking about health-related stuff. And there was a lot more on today’s list that I didn’t get to. No, this is just a short list of a few basic things I did today.

For context, I should have received a decision about my disability insurance appeal two months ago. I figured that would give me plenty of time before the end of April, when I’d have to give notice to my landlord if I was going to move out of my apartment instead of renewing my lease. It was a nice idea, but the insurance company decided not to adhere to the deadline. So now it’s late April, and I was ignoring the letter from my landlord because I just didn’t know yet how to respond. If I move out, it will mean living with my parents.

Health stuff April 23, 2013

11:41 am – Received a call from the landlord’s realtor

11:43 – Spoke to T at landlord’s management office; She offered to either let me decide on the lease renewal by 5/15 or to extend the lease 1 month, which would mean paying another month’s rent but I’d have until the end of May to decide if I’m moving out

12:05 – Left voicemail for lawyer

12:42pm – Called health insurance company to find out about physical therapy benefits; after more than 8 minutes on hold I hung up and ate lunch

1:50pm –  Called health insurance company to find out about physical therapy benefits; found out I need prior authorization for all visits after the intake visit and I can get this from the physical therapist or my doctor

2:23 – Called physical therapy office to make intake appointment but was told doctor order must be faxed over; even though it’s not needed for insurance, they require it themselves

2:26 – Called Dr. K’s office to get physical therapy order; they said they should have it done by tomorrow

Throughout the afternoon – sent over a dozen emails to friends and parents discussing whether I should extend my lease even though I don’t know the disability insurance decision yet

4pm – Called Dr. H (endocrinologist) to get thyroid test results. On phone for almost 8 minutes.

4:10 – Emailed Dr. S (naturopath) with test results from Dr. H

6:57pm – Spent 1 hr 27 min talking to parents about housing; should I extend my lease or move out sooner or do something else? No decision made, but covered everything and will think about it. Lucky to have such supportive parents!

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So that was my day. Except for the unusually long phone call at the end, it didn’t feel particularly unusual. I also needed to cancel a followup appointment, call for more test results, and make an appointment. In addition, I needed to resume making phone calls to try and find a new endo who takes my current health insurance. Maybe I’ll get to some of those things tomorrow. That will be in addition to following up on physical therapy and the thyroid test results and of course figuring out my housing issues.

Now, remember that this does not include my physical therapy exercises, time spent taking and tracking pills, rest, sleep, extra cooking time, research, or any of the other things I do for my health.

I am not writing this to complain. I am writing this to educate. People ask what I do with my days since I’m not working. Well, I may not be getting paid, but I sure as hell am working! Taking care of my health is more than a full time job, and I challenge anyone to try and disagree with me.

Ok, time to go research a new-to-me thyroid drug.


Elusively trying to measure energy

April 22, 2013

The question seemed simple to her: “How is your energy compared to how it was around the time of your last visit?”

Well first, you’re asking someone with memory problems to remember how she felt a month ago. Then you’re asking her a Fatigue Scalevery subjective question. Try again.

“How is your energy on a scale of 0 to 10?”

That seems better, but it feels even more subjective. I did a lot this weekend. I did more than I had in a long time. And at the end of the weekend I was completely worn out. I was too exhausted to cook dinner last night. I had to sit and rest for close to an hour before I could even get out of my chair to heat up food from the freezer. Still, I was excited at how much I did.

Well, I was excited until I realized how much more everyone else did. Take the brunch. I was a bit late, but still one of the first to arrive. I didn’t have the energy to cook, so I brought chips and salsa. It was such a lovely day and we were near a great park, so afterwards I went for a walk with a friend who was at the brunch, K. It was a short walk, but it was great to get outside. That was all I could manage, though. I went home and collapsed. K, on the other hand, had been out before the brunch. She had gone downtown and visited the memorial at the site of the bombings. She lived farther away and it took her longer to get there. Then, after the brunch and our walk, she met up with a friend for dinner. Huh, I guess people can do that. The host had to get the apartment set up. She prepared everything. She cooked. She entertained. Then after all of that she walked out with us and headed to a meeting for a volunteer group she’s in. Huh, I guess people can do that too.

So how can I possibly measure how I feel? I did so much, yet it was so much less than everyone else seems to do. Still, I tried to be as objective as possible and rated my energy at a 5. Then my doc read back my last visit’s report, from just one month ago: I’d rated it 6 out of 10. I’m sure I don’t feel worse than I did then. I’m certain it’s just my perspective. So now the question is, was I too high last time or too low this time? Or am I really getting worse after all?

I just don’t know. I don’t know. I wish I knew but I don’t. I think I’m getting better but it’s so hard to tell. And there are just so many problems holding me back. I need to find a new doctor to work on my thyroid. I need to get this insurance issue settled so my stress will be reduced. I need to keep adjusting my diet. All of these things are holding back my progress. I just wish I knew if they were holding it back entirely or if I really am moving forward.

I really hope I’m moving forward.


Remembering that my body has “normal” problems too

April 18, 2013

I have a high pain tolerance. I guess it’s necessary when you live with chronic pain. That’s probably why I barely noticed yesterday when my knee hurt and I found myself limping a bit. And yet, ripping the tape off my arm after a blood test today was terrible. I hate doing that! Sometimes it’s those little, everyday things that make me pause and remember that despite all of my illnesses, I still have a non-ill body too. And yesterday was a great reminder of that.

After a long break, I had a sex date yesterday. I wrote before about my sexual relationship with D. We’re friends, too, so we’d been texting and emailing, but due to personal problems on his end, we stopped sleeping together for a bit. After more than two months, we were finally going to see each other again! I was so excited. I picked out what to wear. I thought about fun ways to greet him. I indulged in lovely fantasies. (By the way, that’s a great way to pass the time when you have no job to go to.) I considered my health. I made sure to get lots of sleep. My pain levels were ok, and so was the fatigue. The long-lasting cold (thanks to my malfunctioning immune system) was finally over. I was ready! The big date day finally arrived…. and so did my period!

When you’re dealing with unpredictable chronic illnesses, there are so many things that can go wrong. I’m constantly on the lookout for those. Sometimes they affect my plans and sometimes they don’t, but I always try to be prepared. It just never occurred to me to prepare for anything so mundane as my period, something that could affect even “healthy” women.

In the end I was lucky. D isn’t squirmish and told me to do whatever I felt comfortable with. Thankfully, due to the hormones I take for PCOS, my period is very light (though not entirely predictable.) It dampened my libido a bit, but not enough to ruin things. We had a great time and, aside from some sleep deprivation, I feel great.

Now I need to remember the lesson I just learned: even sick people can have non-sick problems. Strange but true.


My home, my Boston

April 15, 2013

I’ve had one hell of week. It’s been eventful healthwise and in terms of insurance stuff. There’s been stuff happening with family and with friends. And so writing just didn’t happen, even though I thought of it often and really wanted to. But things had calmed down today, and inspiration struck this morning, so I was excited to write. And then the bombs exploded. I was not there, but I still feel shaken. If you don’t know what I’m talking about, try reading this: http://www.chicagotribune.com/news/chi-boston-marathon-explosion-20130415,0,641755.story

I have made a point of not writing about these kinds of tragic events. For that matter, I haven’t been writing about holidays or other big happenings, either. But this is different. This feels personal. And it’s my blog, so I get to write about whatever I want, right?

When I was a kid, I didn’t realize how big a deal the Boston Marathon was. I mean, I knew it was big in our little world, but I didn’t understand the world-wide reach. As an adult, I feel privileged to have watched the marathon so many times, to have supported so many runners. I’ve handed out food and drinks, I’ve cheered, and I’ve encouraged friends who ran. It was always a fun day.

I didn’t go to the marathon today. I was thinking this morning how odd it was that I didn’t know anyone running this year. And there was some health stuff. Instead, I decided to spend the day with my mom. Today’s a state holiday, so some people have the day off work and some don’t. She did. We went shopping and then went back to her house. It was a really nice day to spend together, and we were both feeling happy, despite our respective health issues.

There are some things we don’t forget. I won’t forget where I was when the Challenger exploded. I won’t forget where I was when I heard about the first place hitting the World Trade Center tower on 9/11, or how I felt when I heard about the second plane a few minutes later. And I won’t forget happily chatting with my mom this afternoon, then answering her phone (because I was closer to it) and hearing my aunt (who lives in another state) asking if we were all ok. I had no idea what she was talking about, but she filled me in fast. And it all changed.

Suddenly, we were all glued to the tv. Now, hours later, it still feels like a bad dream and I’m waiting to wake up. In those first moments, we were just stunned. I started texting everyone I could think of who might be there. And then I texted and called others who I knew wouldn’t be there, but who might have loved ones there and who weren’t likely to have heard the news. Then I checked FB and the early posts were there. It was just the beginning of a flood, though. Twitter was starting to post about it, too.

I am fiercely protective of the people I love. I’m the mama bear protecting her cubs. Don’t you dare hurt someone I love! Last week a friend was getting hurt. I stuck my nose in where it was none of my business and he understood why: my instinct is to protect. It always has been and I hope it always will be. It’s how I felt today. This is my city, my home. I’ve lived here most of my life, and in the few years that I lived elsewhere, I still thought of Boston as my home. And how dare someone do this to us!!!

We all lost something today. We lost some of our feeling of safety. It’s a scary world. I know that. In fact, the tv show Glee had an episode last week about a school shooting. While the students and teachers on the screen hid, I thought about how quickly the world has changed. When I was in high school, it never occurred to us to be scared of a shooting. Sure, some schools in some neighborhoods were dangerous. But aside from that, it was all safe. There were no lockdowns. Our classroom doors didn’t even lock from the inside in those days. But in a few short years, that’s all changed. And in a few short years, so has the Boston Marathon. When I was a kid, it never occurred to me that anything bad would happen when I watched the marathon. My biggest problems were not having enough snacks, or not being able to find a bathroom when I needed one. And now it’s all different. Now I won’t feel the same about it. None of us will. Just like I won’t feel the same way when I walk down Boylston Street, a street I’ve walked down countless times before. I’m due to be there in a few weeks and I just can’t imagine how it will feel to walk past this place that used to feel so safe.

But somehow we’ll all manage. We’ll all move on. We’ll support those who were hurt and who lost loved ones. Because despite it all, this is a strong town and we care about each other. That’s why it has always felt like my home. And it’s why I want so desperately to protect it.


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