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.


When the best medicine is taking care of someone else

June 17, 2017

Today started out rough. I felt like I did too much on Wednesday. Thursday I did less, but probably should have stayed home to rest. By Friday I had no choice but to spend all day at home in my pajamas, watching tv and crocheting. So this morning, I was glad to feel better than yesterday, but I still didn’t feel great. And yet, I didn’t want to cancel all of my plans.

My evening plans had to be cancelled. I knew I had to get to bed early. But the afternoon plans – a friend coming over who I already cancelled on at the last minute last time – I didn’t want to cancel again. So I rallied and got dressed and waited for her to arrive, knowing it would be a quiet day and I wouldn’t have to leave my apartment.

When she came, she had the start of a migraine. Unfortunately, she had switched purses and didn’t have the over-the-counter medication that helps her. I didn’t have it either. I offered to go to the store, but she said no. So I messaged a bunch of neighbors. No luck.

I got her a cold pack for her head. I made her tea. I shut off the lights. Eventually, I insisted on going to the store for her. So much for staying home. But the funny thing was, I felt ok.

After taking the med she slowly started to feel better. I got her food and kept on eye on her, making sure she was doing ok.

I have noticed this kind of thing before. Obviously, there are times when I’m not at all able to care for someone else, or when caring for someone else will make me feel worse. But then there are other times, times like today. Times when I’m not doing great, but I’m not doing horribly either, and taking care of someone else gets me outside of my own head, distracted from my own condition, and eventually I even begin to feel better.

I feel bad my friend had a migraine. I wish that hadn’t happened. Still, it was a good reminder for me:

Sometimes the best medicine is taking care of someone else.


The importance of community

June 15, 2017

Last week I saw my primary care doctor for my annual exam. At the end of the visit, he brought up the fact that I was on disability. He said that only 5% of people ever manage to get off of disability benefits. He said that it was important to find activities to keep busy and productive. Then he talked about the isolation that can come when you don’t have a job to get you out of the house, and you don’t feel up to going out a lot. He said it was important to have community, and it’s important to make an effort to create that community.

He’s so right. (And I love that he’s having this conversation with his patients!)

I assured him that I have community. If he only knew.

hands-1939895_1920

I have worked hard to make friends and build community. It doesn’t come easily or naturally to me. I’m an introvert by nature, and my health issues have made me even more of an introvert. Not being able to go out often doesn’t help either. But it’s important to me to have friends and community in my life, so I made it happen.

For me, the key has been to go for quality instead of quantity. I don’t have hundreds of friends, but the ones I have are good ones. Acquaintances are often happy to help me because they see me helping others.

That’s why when I needed to borrow a wheelchair recently, I had 3 offers to lend me one, plus 2 other folks suggested local organizations that lend out medical equipment for free. When I needed someone to push that wheelchair, I was able to post on Facebook and get some offers from friends and also from acquaintances I barely know. Because I have that community.

Sometimes it’s hard. I put myself out there, which means I’m often asked for help and I need to say no. Thankfully, most people understand my limitations. And they appreciate it all the more when I volunteer. A friend is going out of town and leaving her dog at home, with the dog walker coming by many times each day to walk him. It’s not perfect, but it’s the best they can do. I said that if she gives me her key (which I am getting today), I’ll pop in to visit him a couple times, just so he has someone to cuddle with. She was amazed. To me, this is just a nice thing to do for a friend. I won’t go by every day, but on the days I’m in the neighborhood, I’ll bring a book and read while her dog gets some important snuggles. It won’t be the first time I’ve done this for a traveling friend. (And let’s be honest, while it’s an inconvenience, I certainly won’t hate doggie snuggles!)

I belong to a chronic pain support group. Having people who really understand the struggle makes such a difference. It was one of those members who ultimately lent me her wheelchair, and even put it in the car for me because I couldn’t. I do a lot for that group, too. I created and run a Facebook group so we can communicate easily between meetings. I do other behind-the-scenes tasks, too. It doesn’t take much time, but it helps people. And they notice, and want to help me in return.

It’s so easy to become self-involved these days, and more so if you’re in pain or fatigued or dealing with other symptoms all day every day. Believe me, I know. And so many people lose their friends and their families when they become sick. So I am hugely grateful for the incredible people in my life. My parents and other relatives are super supportive, my childhood friends have stood by me and help when they can, and newer friends are ready to step up and help. Acquaintances do more than I would have expected. Even strangers offer to help, thanks to all of my work in the chronic illness community online (both this anonymous blog and a lot of work under my real name.) I am so fortunate that I began building that community long before I needed it, and that I still have it.

I think we all need to heed my doctor’s words and find a way to build community. It will look different for everyone. Some people will reach out to friends, others will go to events through meetup.com (I’ve built some great community that way, too!) and others will do it all online. Whatever it looks like for you, I hope you are able to build the community that you need and that will support you, just as you will support them whenever you can.

What about you? How do you build community? Please share in the comments so we can learn from each other!


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.


%d bloggers like this: