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.

2 Comments | Educating, Expectations, Frustration, Healthcare, Job, Rants, Support | Permalink
Posted by chronicrants

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.

6 Comments | Expectations, Fatigue, Frustration, Healthcare, Limitations, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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.

3 Comments | Educating, Expectations, Frustration, Limitations, Rants, Relationships: Family & Friends & Dating & Sex, Symptoms, Unpredictable | Permalink
Posted by chronicrants

It feels great to do ANYTHING proactive!

April 5, 2013

I’ve been a proactive person for as long as I can remember. Sure, I procrastinate a bit. Ok, I procrastinate a lot. But when it counts, when it’s important, when I care, I really get things done.

In my personal life, I get things done. When the cable company wasn’t fixing my service, I called them and hounded them until it was fixed (and I received multiple apologies from them!) When I needed medical paperwork at school or at work, I always took care of it; even in middle school, I was careful to get notes from my doctors so I would be excused from gym class and in high school I took care of special arrangements for a non-standard SAT test and got note-takers in my classes. You name it, I did it. Even as a child, my parents knew I’d take care of everything and never interfered at school or at my jobs. They were there for advice and support, but I was the one who did everything.

In my professional life, I was even more efficient. Just watch a vendor try and stiff me on a service or not meet a deadline! One particular staff member had trouble meeting deadlines, so I broke down projects for her and sent reminders for each piece well in advance on their due dates. When something broke, I got it fixed. I got out ahead of problems and stopped them in their tracks.

I like being in control. I like taking steps to get things done. And that’s why it’s so hard to not have any control in my current situation. Of course there isn’t a ton I can do to control my health. I do what I can, but it’s limited. I want to see certain doctors and try certain treatments, so I get frustrated at financial limitations. But I’m trying. With the disability insurance, though, I’ve been completely stuck. If it was up to me, I’d call the insurance company every single day and bug the hell out of them until they approved my claim just so they could get rid of me. Unfortunately, I have to rely on my lawyer to work with them. I sit and wait and then wait some more. I get notices of delayed decisions and can’t call them up to find out why on earth there’s a delay. It’s infuriating.

So it’s no surprise that I found myself in a fantastic mood a couple hours ago. I spoke to my lawyer yesterday about the latest delay, which I found out about earlier this week, even though it took place more than two weeks ago. We discussed my lack of options. There’s no regulatory agency. Calling the attorney general won’t help. Calling my senator won’t help. Calling the company isn’t an option for me, and she already left a message (which hasn’t been returned!) Suing is my only option, and it’s likely to fail. They know there’s nothing I can do, so I asked my lawyer why on earth would they bother to do it at all? Why not just delay another 6 months? After all, even if they approve me, they do not owe me any interest or reimbursement for costs I’ve incurred. So why wouldn’t they continue to delay it? My lawyer had a good answer: to keep their clients happy. They don’t want to piss off my employer (well, former employer) by denying every claim that’s submitted. That gave me an idea: what if I called my employer’s benefits person and told her what was going on? My lawyer didn’t object.

And that’s how I found myself finally doing something useful today. After 2 days of phone tag, the benefits person and I finally spoke. The call was short, under 10 minutes, but it was enough. I told her my story and she was concerned. She took notes. She asked the right questions. She expressed sympathy for my situation. And then she said she’d email the insurance company to find out if the latest internal deadline of theirs was met. She warned me that they wouldn’t give her an answer because they would only give that to my lawyer. However, she felt that by asking the question, they would realize they were pissing off their client and would move their asses on my case. Ok, she put it in more professional language, but that was the idea of it. She promised to get back to me next week when she heard from them.

This may have been the push that changes everything. Or it may accomplish nothing at all. But at least I did SOMETHING to help myself. After so many months of just waiting, it feels great to do something to potentially move things along. I just hope it works!

4 Comments | Expectations, Frustration, Limitations, Milestones, Politics, Rants | Permalink
Posted by chronicrants

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