There’s no such thing as a quick swim anymore

June 26, 2017
pool-690034_1920

I wouldn’t mind being able to do this!

When I moved to a new apartment a few months back, a lot of friends were excited for me that I now had a pool. They were a lot more excited than I was.

I lived in a building in a pool once before. It was about 15 years ago. I was living in sunny Los Angeles, where pools are more common, and I was in much better health. I swam regularly during the months when I had less work (and more time.) It was lovely!

But this is not that. This is different. My new friends in the building often invite me for a quick swim. They have no idea what that really means for me.

  • Driving to the pool seems silly, but it’s 1/3 mile away, which is sometimes too far to walk, especially in the summer air.
  • If it’s too cool, no one wants to swim.
  • If it’s too hot, I can’t be outside, even in the pool.
  • If it’s too humid, I can’t be outside, even in the pool.
  • I must bring a lot of water and snacks, even for a “quick” swim, to stay hydrated and keep my strength up.
  • I will be in a lot of pain afterwards.
  • I will be in a lot of pain the next day.
  • I will be exhausted the next day.
  • I might have to cancel all of my plans for the next day so that I can rest and recover.
  • I won’t be able to cook that night, so I need to have leftovers available for dinner.
  • Obviously I can’t swim if I have plans later in the day, because I’ll need to rest.
  • I need to take extra meds if I’m going to swim, which means I have to know about swimming far enough in advance to take the meds.

There’s more, of course, but this gives folks a good idea of why swimming for me isn’t the relaxing, care-free, spontaneous, fun activity that it is for my neighbors. There are many things in our lives that get ridiculously more complicated, painful, and exhausting once chronic illness enters the picture, like grocery shopping. The big difference is that swimming is completely optional. Sure, skipping the pool hurts my social life a bit. But it helps my LIFE life a lot!

I’m not saying I won’t go swimming at all this summer. Only that the logistics have to be just right. I need to know the right people will be there so I’ll have, I need to be feeling good that day and not have other plans in the next day and a half, the weather has to be just right.

It’s not easy. But then, few things are when chronic illness is involved. So yes, I will be the “spoil sport” who skips the pool. I can live with that. Because I’ll live better for it.


How bureaucracy continues to screw with me for being disabled

May 31, 2017

Remember this post from a year and a half ago when I was told I was nearing the top of the waiting list for Section 8? Well, a year and a half later I found out they were just screwing with me.

The other day I was thinking about what I would do if I suddenly got Section 8. At this point, it would make a huge difference. I could stop trying to work, and stop feeling overwhelmed all the time. I could actually cover almost all of my expenses. I could focus more on my health. Good things, right?

The last time I asked about my Section 8 status I was given vague non-answers. A year and a half ago they said I was near the top of the list and I spent hours filling out paperwork, some of which they lost, and I had to redo. A few months later they had me do more paperwork with my financials for the latest year. And then I heard nothing.

I checked in a few times, but they didn’t tell me anything.

After thinking about how helpful it would be, I decided to try again. I recently moved, so I called the housing office in my new town. I learned a few important things:

  1. When I signed up the waiting list was 4-5 years long. Now they’re saying it’s 10 years long.
  2. Because I moved, I’m no longer going to get a voucher from my old town. I mean, it’s allowed, but it won’t happen. Every town gives priority to people who live and work in that town. So my new town will give me priority over others, but of course, a lot of people are ahead of me on that list.
  3. I have another 2-3 years to go. Maybe more.

The woman I spoke to was confused as to why I was brought in to fill out paperwork. She said I was far too low on the list for that. And that was yesterday. I was obviously much lower on the list a year and a half ago!

This means a few things to me:

  1. Filling out that paperwork was a waste of my time.
  2. Filling out that paperwork was a waste of the housing office staff’s time and therefore money. Certain politicians say that people like me are wasting taxpayer money. Nope, not me. Believe me, I’d have rather not done all that work for nothing! The office wasted the money.
  3. I have no chance of getting Section 8 any time soon so I have to continue to try and earn money myself.

This sucks. A lot. At a friend’s urging, I will contact my state rep, and maybe my U.S. rep, to see if they can find out what’s going on. The thing is, they might find out, but I doubt it will help me.

I was jerked around. I was given false hope. And there is no discernible reason for this other than incompetence.

I am so sick and tired of poor and/or disabled people being screwed with and disrespected. This has to STOP!


I want my time back

May 25, 2017

Back in the days when I worked full time, I felt like my job ate up all of my time. And it did, in a very obvious way.

Now I feel the same way, but it’s less obvious.

I’m trying to work, to earn some money, and it’s hard. It’s also time consuming. I’m doing this part time because that’s all I can manage, but even that feels like a lot.

And then there are the doctor appointments, the daily physical therapy, the extra time spent on food preparation, and just resting. The health stuff is its own part time job.

I’m constantly doing things and when I’m not, I feel bad because I should. Right now, I should be working on my new business, running errands, and exercising. There are so many shoulds, and not enough time.

I want to believe that I would gladly put in the time if I knew it would work, but even if the business succeeds, can I still maintain this level of input? What happens if I get a dog? How would I find time for him?

I am trying so hard to constantly work and be productive during my “good” times of the day, so I can rest during the others, and in that respect I’m succeeding. I get plenty of rest. But I also feel plenty of overwhelm. I don’t know what the answer is, or if there is one. I only know that I can’t do as much as I’d like, which is still only 20% of what I used to do, and it’s frustrating.


One thing we can do to save healthcare

May 19, 2017

I’m keeping this short, because today is a recovery day. It’s a recovery day for many reasons, and one of those is because I spent a lot of energy talking to a senator’s aide yesterday about the state of healthcare in our country and where it’s headed.

Obviously, this is a hard topic to discuss. It’s complicated and scary and very personal. He said a lot of things that I found unhelpful and uninteresting. But then he said some other things that could make a difference. One of those is this: senators’ staffs track all phone calls. Even from out-of-staters.

Some record them and list them all out. Others don’t. But even the ones who don’t know how many calls they’re getting and which way people are leaning.

This aide said they’re getting thousands of calls about healthcare, and not all from people in our state. Hmm.

So we should all call. State our case. We don’t have to say where we’re from up front. Say it at the end, so they listen to our content before they judge. It can be as simple as, “Hi, my name is ____ and I’m calling to ask you to vote against the AHCA. The Affordable Care Act allows me to keep my insurance (or whatever other benefit it provides to you) which keeps me alive (or any other benefit you receive.) Please vote to keep and improve the ACA. Do not repeal or replace it. I am from _____. Thank you.”

Or instead of talking about your personal experience, you can simply say that it will cost millions of people their healthcare, and that you don’t believe that is in the best interests of our country.

Easy. Simple. Fast.

Not sure who to call? There are 100 senators – 2 from every state. Start with the 2 in your state. Even if they are voting the way you want them to, they could use your support! You never know when a flood of calls from the other side might alter things, so please call and voice your support. Then work your way through the list. If you have friends or family in a state where the senator is on the fence or voting the other way, ask them to call, too.

You can find contact information for all of the senators here: https://www.senate.gov/senators/contact/

Here are some senators in particular to call and encourage to vote against the AHCA.

The loss of healthcare is a difficult, scary, horrifying prospect. Let’s do all we can to make sure it doesn’t happen. Please take a moment to share this. You never know whose phone call might be the one to tip the scales.


Wishing my doctors were connected

May 13, 2017

My podiatrist said she might want to get an MRI of my left foot if the cyst grows any bigger. I mentioned I was having an MRI of my left knee the next day. Too bad my podiatrist’s private practice is associated with Mt. Auburn hospital and my MRI was ordered by a doctor at Brigham & Women’s hospital.

Brigham is part of the Partners Healthcare network and Mt. Auburn is considering joining, but it hasn’t happened yet. When I happened to say that, my doctor was shocked, and asked how I knew about that. I didn’t know what to say. I’m a patient with chronic illness, with doctors spread throughout multiple hospital networks. Of course I watch for these kinds of things in the news! It affects my life too much to not pay attention.

Then I got that MRI of my knee, and it’s not great. I’ll know more after I see the specialist on Tuesday, but it looks like my knee cartilage is being worn away by wear and tear. This is never good, but it’s especially not good for someone in her 30s who needs her knees to last another 50-60 years!

Now who should I tell about the MRI? So far I figure I should tell my primary care physician, my podiatrist, my naturopath, and my physical therapist. Maybe I’ll come up with more later, but for now, those 4 should know. Too bad NONE of them are in the same network as each other or as the doctor who ordered the MRI.

I have written about this before and I know that I will again. Because it sucks, and because it impacts my health in a very real and very negative way. The one consolation is that at least I have the option of emailing information. It doesn’t have to be done by phone and fax. So I copied the text of the MRI report and pasted into an email to my PCP. It’s not perfect, but for now, it’s good enough. I will have to continue to do that throughout this process, I’m sure.

I just hope nothing falls through the cracks. Because it is up to me to keep up with the paperwork. My doctors won’t communicate with each other, and if something falls through the cracks (again) it could be very bad for my health. It shouldn’t be up to the patient, but it is.

This is just one more example of why, in my experience, only healthy people say our system isn’t broken.


Another day, another medical appointment

May 3, 2017

A neighbor said hi as I walked out my door.

“Where are you off to?”

“I have a medical appointment.”

And as I said it, I remembered that when I saw her yesterday, I had mentioned that I was just getting home from a medical appointment. It’s not strange to me that I have appointments two days in a row, but it probably seems strange to others. If they only knew.

My parents asked me to watch their dog for a couple days while they’re on vacation. If you’ve been reading this blog for any length of time, you know how I feel about dogs. So obviously I’m thrilled to do it! First I had to check my schedule (as if I ever go anywhere.) Let’s see what I have during that time…. endocrinologist, rheumatologist, primary care physician, physical therapist. That’s it.

It’s a couple weeks away, so hopefully I’ll make plans with friends, too. But still, 4 appointments! I have friends who only see a doctor once a year for a checkup. I wonder what that’s like? I guess I’ll never know.


Why first person I turn to is Dr. Me

April 24, 2017

It feels like everyone with chronic illnesses has their own story of medical mismanagement. That leads to everyone having their feelings about doctors and the medical establishment. For me, it lead to a combination of distrust and dismissiveness. Which is why it wasn’t until I had a bad reaction that I realized I should have run things by my doctor. But it just simply had never occurred to me to talk to him about it.

My own story of medical mismanagement has to do with crappy insurance, insular establishments, poor practitioners, and a lack of communication. In hindsight, I still can hardly believe that in 11 years of symptoms, my doctor only sent me to a rheumatologist ONCE, and that was only to rule out lupus. The next time I saw a rheumatologist was by my own design, and I was diagnosed within a few weeks.

As it turns out, the test he used to diagnose me had been run several times before, with results that weren’t high enough for a diagnosis, but that were high enough that they should have been flagged. But no one told me about it, and my primary care physician didn’t keep track of it. So the ball was dropped.

Over and over the ball was dropped. It was dropped when I went to my doctor asking to be tested for lactose intolerance. He told me there was no such test (a lie!) and to keep a food journal. Then he showed the journal to a nutritionist (supposedly) and said that it showed I wasn’t lactose intolerant. That was it. No followup. No tests. No referral to a specialist. A few years later I was “diagnosed” with IBS. I remained sick. I was often underweight. I the pain, nausea, and diarrhea were getting worse. 12 years after the lack of a lactose intolerance test, I told my current doctor that I wanted to be tested for Celiac. She said there was no point, that I clearly didn’t have it, and the tests weren’t accurate anyway. She offered no other suggestions, tests, or specialist referrals. So I went gluten free on my own and saw results within a few weeks. 6 months later, with the help of my new naturopath, I made more changes to my diet. Finally, after 20 years of nausea and other digestive symptoms, I was “cured.”

I could tell you dozens of stories like this, but the stories themselves aren’t the point. The point is that I found little use for primary care physicians. They rarely treated my symptoms properly. The rarely gave me the right referrals without a lot of nagging from me. They were supposed to coordinate my care but never did. So what was the point of them? I kept them because insurance required it, that’s all.

Recently I was having a normal day, when I was hit by a wave of nausea. Then my pulse spiked. I felt like my heart was going to beat out of my chest. I took my pulse many times. At one point it was 114. That’s not good. After 45 minutes or so, it hit me: I was having a hyperthyroid incident! A minor hyperthyroid incident is scary. A major one can kill you. So yeah, it’s good to take these things seriously. I immediately called my doctor, arranged to take the blood test the next day (since the office and the lab were about to close in 10 minutes) and lowered my medication.

When my doctor, and later other doctors, asked what caused the hyperthyroid incident, I was able to give them a short list of likely reasons. They agreed with my assessment. And the question kept coming up: why hadn’t I told my doctor about the change I’d made to my adrenal supplement dose?

The answer: because I never thought of it.

I knew I would have to lower my thyroid dose to account for the new adrenal dose. I had planned to do that the next week. My body just responded to the change faster than I had expected. My naturopath was working with me on this, and she hadn’t expected such a quick response either.

This wasn’t the first time I had changed that supplement. But I had never discussed it with my doctor.

The funny thing is, for the first time in my life, I have a PCP I like, respect, and trust. But I didn’t tell him.

Because decades of dislike, disrespect, and distrust had trained me not to.

I should have told him. I know that in hindsight. And I hope that next time I will. But who knows? I have very good reasons to be so dismissive of PCPs. No one argues with that (except my doctors, of course.) Maybe one day, if I have enough good experiences, I’ll learn to trust them. Maybe.

In the meantime, I continue to default to my own opinion, at least in areas I have researched (like my thyroid and adrenals.) It has served me pretty well so far.

After all, I chose to lower my thyroid dose after that incident. I hadn’t had the blood test yet. I didn’t know for sure what had happened.

Then the test results came back. I was very hyperthyroid. My doctor’s office told me to lower my dose immediately. But that was days later. The delay could have been dangers.

I had made the call myself, and it was exactly the right decision. Because Dr. Me knows my body better than any other doctor ever will.


%d bloggers like this: