I couldn’t remember how I “got better”

February 23, 2017

It’s not like I’m “healthy” by any means. But compared to 5 years ago, I’m a different person.

If you were reading this blog 5 years ago, you know that I was struggling to get through each day. If I went grocery shopping, I’d be so exhausted that I wouldn’t leave the house again for the rest of the day, or the next day either. I’d rest up for 2 days so I could spend an afternoon with my family, then I’d need 2 more days to recover. I didn’t leave the house much, and when I did it was really tough. I researched my health issues and began to find answers. I would read 3 pages in a book, fall asleep, wake up having forgotten what I’d read before, and have to start over. The brain fog made it hard to understand any of the medical concepts and I often had to read the same paragraph 5 times. It took ages to get through one book, but I did it. And I learned from it. And then I started the next book.

So how did I get from there to here? Here, where I can go to the grocery store, read a chapter in a book, and cook a meal all in one day, while still feeling ok. It’s like a miracle!

Someone asked me today about medications I’d taken. We’d just met, but I’m obviously open about my health conditions and she’s in the medical field, so she was curious. But the thing is, I couldn’t remember.

Later, it started coming back to me. The diets. The supplements. She asked about prescriptions, but those weren’t what did it. Except the thyroid medication. I’d forgotten about that. Oh yes, that helped a lot. Getting rid of the daily nausea did wonders. And the supplements, slowly over time, began to work. Of course, I forgot about the sleep apnea diagnosis. First the CPAP machine, then the ASV machine (similar to a CPAP, but with different air flow) did wonders for me.

I guess the brain fog still rears its ugly head, because I honestly could not remember any of that in the moment that she asked. I think every day about how much better I’m doing. I am so happy, grateful, appreciative. There are a million “What ifs” for how I might not have improved. But I did improve. Thank goodness.

So the next time I can’t remember how I did it, I will remember to read this blog. These 5.5 years of writing are like my medical diary. It covers all of the big moments, good and small. Not to mention the hell of dealing with benefits (my food stamps got cut off again last week! For crying out loud! I got them back, but come on….)

The thing is, I couldn’t remember today how I managed to improve. But I didn’t forget that I had. I didn’t forget February 2012 when I first cut out gluten. I didn’t forget falling asleep while I struggled to read a book about hypothyroidism. And I didn’t forget how grateful I am for the improvement.

I remembered the important parts. I blocked out the struggle.


I need help but I’m not helpless

February 13, 2017

Maybe it’s because I have a disability. Maybe it’s because I ask for help. Maybe it’s because I’m a woman. Maybe it’s all 3. Whatever the reason, it’s irritating.

It’s winter in Boston. Winter in Boston means snow on the ground. Not every day, but enough of the time.

2017-02-12 14.06.26.jpg

It’s beautiful. It’s picturesque. And it’s a pain in the ass.

I love the snow when I’m indoors, but then I need to go out. It’s slippery, and I’m terrified of falling and further hurting myself. I’m not steady on my feet, so a fall is more likely. I need help shoveling out my car due to my back and wrist pain. Suffice to say, it’s difficult.

Luckily, friends and strangers have been kind over the years, and in my new home, that hasn’t changed. Folks have helped me shovel out my car, and for that I’m grateful.

What I could do without is the “explaining.” Today a neighbor helped to shovel out my car while I cleared the top, which thankfully I’m still able to do. It was really sweet – we’d never even met before. I was really appreciating his efforts. Then he told me to “try moving back a bit, don’t gun it, if you get stuck you’ll want to…” and he proceeded to tell me how to back out of the parking space. I’d already told him I’d grown up here and lived most of my life here while we chatted about Boston winters. So why did he think I couldn’t back out of a parking space in the snow (if you’ve never done it, yes, it’s tricky. But once you’ve done it for 20+ years, you usually know what you’re doing.)

The other day it was someone else telling me how to back out of a space. A couple weeks ago, someone warned me as I got in my car that the roads would be getting slippery soon. What the $%#@?!? I learned to drive in this stuff back in the ’90s! I know how to tell when roads are getting slippery, for crying out loud.

I need help. That’s true. I won’t deny it for a second. But I’m not entirely helpless. There’s a lot I can do and there’s a lot that I know. Driving in the snow is one of those things. So I wish people would stop condescending to me.


Tapping into my extrovert side

February 6, 2017

img_20161223_091955I’m an introvert. If I’d known that about myself and understood it, my teens and 20s would have been a lot easier, that’s for sure! It turns out, it’s ok to want to stay in and read a book on a Saturday night. Go figure.

I also happen to be a social introvert. I love being with people. I even feel like I need to be around people from time to time. And on the days I’m feeling more extroverted, I’m good at it. I can have pleasant conversations with good friends and with total strangers alike. As long as I get plenty of breaks for alone time so I can recharge.

The thing is, when you’ve got a chronic illness that creates so much fatigue you can’t work and can’t always leave the house, and so much pain that sometimes getting to the bathroom takes everything you’ve got, social time can be hard to come by. Friends sometimes come over, but not so much these days. As my friends have begun to have kids, visiting has become difficult or impossible. I understand and I don’t blame them. But it still sucks.

Six weeks ago I moved. I can’t believe it’s already been 6 weeks! I knew moving would mean that some friends would visit less often, since I’m not on public transportation anymore. Still, it’s not like I had that many visitors anyway. It was worth the trade-off, I figured. Little did I know!

This is the first time since college that I’ve lived in an apartment complex, but I’ve never lived in a complex like this. People are so nice and friendly!

First there was the complex-wide holiday party. It was less than a week before I moved in, and I should have been home packing boxes, but I knew it was important to meet people. So I got slightly dressed up, drove all the way out, and put on my extrovert costume. I met several people, including a few who lived in my building, and traded phone numbers with a couple of them.

After the move I made a point of talking to neighbors. I introduced myself to everyone I met. I knocked on doors in my hallway. I chatted with the woman clearing snow off the car next to mine, and the random person passing walking past me on the sidewalk. I smiled and was nice and friendly.

And it’s paying off. A neighbor and I have been taking walks in the evenings when she gets home from work. We have done this at least a half dozen times, and it’s really nice. Another neighbor invited me over for game night. That led me to meeting more neighbors. I hit it off with one right away, and we’ve now hung out a couple of times. Today I saw a neighbor I’d spoken to a few times walking by my patio door so I opened the door to say hi. She and her puppy (so cute!!) came in and I invited her to sit. We chatted for a bit as the puppy sniffed around and then returned to me for petting. As she left, I saw another neighbor who I knew, so I invited her and her pup in, and they hung out for a bit.

None of these are life-altering per se. But they matter. On a day when I wasn’t going to socialize, I socialized. It didn’t last long, but it happened.

I have spent many days being home alone and feeling lonely and sad. I know I will feel that way many more days. It sucks, but that’s my reality. A lot of the time I won’t want visitors. But on the days that I want to see people but don’t feel up to going anywhere, how amazing that I have neighbors right here who I can hang out with! It might not happen every day, but that doesn’t change the fact that it’s always possible. In time, I will get to know more of them. Some will become friends and some won’t. Just having people to say hi to, though, makes a huge difference.

I knew this was a good move for me. This just makes it 10 times better.


I appreciate you

January 29, 2017

It’s easy to take the constants in our life for granted. We all do it, as much as we try not to, and that’s ok. From time to time, though, I’m struck by how lucky I am to have something, and I want to make a point of showing my appreciation.

You guys are one of those things I was taking for granted. When I started this site 5.5 years ago, one reason was to build up some community. I was thrilled when I received my first comment, and comments still excite me.

Some of you are regular commenters, and we’ve gotten to know each other a bit. I know the names of your pets (hi Sable!) or kids or spouses. I know your worries and happiness, just as you know mine. We haven’t met. Often we don’t know each others’ real names. Yet somehow we know each other. And for that I’m appreciative.

My posts last few posts were a bit negative. When I thought about writing something today, I thought I should write something more cheery so you guys wouldn’t worry about me. After all, it’s not like things are all bad.

It was such a nice thought, that there are people out there I’ve never met or spoken to who care. And I care about them.

There are negatives. There’s a rally today against Trump’s immigration ban that I wanted to attend but couldn’t. I was exposed to a stomach bug and am hoping I don’t get it. I’m in pain. On the other hand, my new business is starting to gain a bit of traction. I got to spend some time this weekend with people I love who I don’t get to see very often. My new home is lovely and comfortable and feels like the perfect fit for me.

But at the end of it all, what’s most important is people. My family, my friends, and my extended communities, like you guys, are what make life great.

So thanks for reading and for commenting. I’ll try to write something a bit less sappy next time. For now, though, I just want to say that I appreciate you.


Sometimes I just need hugs

January 23, 2017

It’s been an interesting time. Last month I moved to a new apartment in a new town after 10 years in my last apartment and 13 in that neighborhood. I’m meeting new people and getting used to a new way of life. And 2 days ago I went to a massive protest to protect my rights and speak out against those who want to destroy them.

I’m sure I’ll talk about the politics a different day, but today’s post isn’t about that. It’s about needing a hug.

On the weeks I don’t always see friends. When I do, we might give a cursory “hello” hug. This time of year I usually avoid those hugs, since it’s flu season my immune system sucks. But sometimes I just want one. And not a cursory hug. No, I want a REAL hug. The strong kind. The comforting kind.

The protest was emotional. 175,000 people flooding Boston Common. I’ve never seen or experienced anything like it. I hadn’t made plans to meet up with my friends beforehand because they were going to stand and watch the rally, while I was going to be in the accessible seating area. It was a great area, if only my friends had been there. We were going to find a way to meet up before the march began. Unfortunately, the cell phone towers couldn’t handle 175,000 people and the lines went down. I lost my signal for an hour and a half. By the time it came back, the march was starting and it was impossible to reach anyone. I was lonely the entire time. I chatting with folks, because that’s who I am, and it was great to talk to them. I probably wouldn’t have talked to so many strangers if I’d been with my friends. But I needed my friends. I needed to be around people I knew and who knew me. And I needed hugs. Alas, that never worked out.

I went home alone. I hung out with a neighbor who I like, but we’re not at the “comforting hugs” stage of our blooming friendship yet. Since then I have been at home, resting. In a few minutes I’ll leave my apartment for the first time since the march to take my car in for service. I doubt I’ll get a comforting hug there.

It’s not the end of the world. I’ll manage. But sometimes I just need a hug, and this is one of those times. I wish I had a friend or significant other who I could just hold and cuddle with until I felt a little less scared, angry, and bad.

Some of my restriction is me. I should have reached out to friends before the march to make more concrete plans. I should have asked them to join me in the seating area (why didn’t I ask? That’s something to explore another day.) Some of it is my health. I couldn’t go out yesterday. It was Sunday, and a lot of people were out and about, talking about this. I was at home resting. It was needed and it worked. Without that day to rest, I wouldn’t be able to bring my car in for service today. I was online talking to people. That helped. But it wasn’t the same as being with them in person. It was good, just not enough.

Because I still need a hug.


When everything goes wrong

January 17, 2017

Lately I feel like I’ve been working all the time. But I don’t have a job. So what the hell is going on?

I had to sit down and think about it, but I think I’ve figured it out. It’s things like the last 24 hours:

  • I got my new laptop, opened it, started it, and found a problem. After an hour on the phone with tech support I was told the laptop needs to be replaced. But the office that handles that was closed for the holiday, so I had to call back today to arrange that. They put in the order and someone will be in touch with me within 48 hours. So I STILL don’t have a working laptop and I’m STILL spending hours doing things that should take minutes. Like the super-long message I was writing, that was almost done, and that was lost when my laptop crashed for the millionth time a few minutes ago.
  • My new apartment is still a mess. Since I can’t set up my laptop, I might as well put together some of the Ikea furniture. I opened the box last night, make sure I had all the pieces, and reviewed the instructions. Totally doable. Today while I was on hold for the SSA (I’ll get to that in a minute) I figured I might as well put it together. There were 8 steps. After 4 steps I was in pain and was going to take a break, but I was excited to be making progress. Everything else is a mess. I wanted to at least get one thing right! So I did step 5. And then steps 6 and 7. I did half of step 8 when the phone was answered. I spoke to the guy for a while, then returned to the furniture. I just had to put in 3 screws! Yay! Except the last 2 wouldn’t go in. I played around and found the problem: 2 of the holes weren’t drilled right. I can’t finish it. I need to exchange the piece. Ergh!
  • I had a simple question about my social security disability. I didn’t have the number for my new local office so I called the main number. I was on hold for 45 minutes, but at least I was able to almost put together some Ikea furniture in that time. Finally I spoke to someone who couldn’t answer my simple question. He gave me another number. They could definitely help. I was only on hold 5-10 minutes before I spoke to someone who gave me another number. This time I’d get answer. And I actually did. It took well over an hour, but I got an answer to my simple question. Why can’t the SSA’s folks at the main line answer such simple questions? Still, now I have to find a way to get the paperwork done without a reliable computer. Hmm.

No wonder I always feel so busy! I’m trying to move into a new apartment, but I can’t make progress on setting things up. I have digital files scattered everyplace. Things are a mess, and it makes my brain feel messy.

This isn’t so bad. I know it. These are pretty simple problems. A messy home is ok. A lack of computer for 6 weeks sucks, but isn’t the end of the world. Spending hours on the phone (if you include the computer stuff and SSA) to not have my problems fully resolved sucks, but it’s survivable. Still, when I add it all up, it’s no wonder I feel like I have a job, like I’m always working. If only I was getting paid for this “work”!

Now the key is to find ways to relax. To de-stress. Because stress is bad for chronic illness and I’ve been feeling it. I slept a lot last night. Too much. And I woke up tired. This is taking its toll, and I need to maintain my health. I intentionally blocked out 3 days this week as “me” days. Yesterday was the first. I didn’t get as much done as I would have liked (setting up the new laptop was on my list) but I made some progress. Today I made more (even though the furniture wasn’t fully built.) I just have to remember that it’s a process. And then I need to take time to relax.

Which means it’s now time for a hot shower, a long walk, and a good book. Then I’m off to my new mah jong group so I can use my brain in a better way.

What do you do when you feel overwhelmed and you need to relax? What are your favorite go-tos?


What should I tell my neighbors?

January 12, 2017

Usually disclosing my health status isn’t a problem for me. Usually. For some reason, this time it feels different.

After writing this blog for a while I realized that talking about this stuff felt freeing. I needed that. So I began to open up in real life. Bit by bit I felt the difference. The more I was open, the better it felt. It wasn’t about making an announcement, but simply not hiding anything. From time to time I’d meet someone new and I’d mention I had “health issues” and the rest would come out naturally. Easy.

Then a few weeks ago I moved. Normally that wouldn’t change a whole lot, but this is a very friendly and huge apartment complex. I have already met many of my neighbors. Sometimes we say a quick hello. Sometimes I pet their dog but never learn their name. Sometimes we exchange pleasantries. But I’ve had real conversations with a few of them. I love it! It’s so great to be friendly with my neighbors. Of course, the downside is that it means I have a lot to share with them and I’m not sure how to do it.

One neighbor offered me food. I said thank you, it looks great, but I have Celiac. That opened up the conversation around Celiac, but not around my other health problems. It was a start. Another neighbor talked about the benefits of living on the second floor, so I mentioned knee pain that prevents me from doing a lot of stairs. Now she knows about my knee pain, but not about the rest.

Another neighbor was talking about dating, and we compared online dating apps we’ve tried. I mentioned dating women. Coming out as bi is a lot like coming out as disabled or having a chronic illness. I feel like I shouldn’t have to announce it, but people assume I’m straight/healthy if I don’t say anything.

So far, all of these conversations have gone well. There’s been no negativity. Still, as I’m making many new friends and acquaintances all at once, I’m wondering how much to share.

I have already decided not to tell anyone that I’m in one of the “affordable housing” units. Or that I’m on disability benefits. Or that I’m on food stamps. Those things all come with assumptions and stereotypes that I don’t want to deal with right now. If I become friends with someone then I might tell them, but until then, I’m keeping quiet. Besides, even if one person is cool with it, they might be a gossip who tells others, and that would be a problem.

So I’m not telling anyone about my financial arrangements, but that doesn’t mean I can’t tell them about my health. The two aren’t always related. I was disabled to a lesser extent back when I was working a full time job.

This isn’t something I want to hide. But I also don’t want to be known as “the sick one” or “the one who is always complaining about her health” – we all know that even when something is simply stated as fact it’s often heard as a complaint – or “the one with all those health problems.” I want people to know me as me. The problem is, these health problems are part of me.

Also, I need to be realistic. At some point I will ask a neighbor to help me with something that a “healthy” person can typically do, and they will wonder what’s wrong with me. I might as well get ahead of that.

Disclosure has to be decided in the moment, on a case by case basis. I know that. Still, it’s hard not to think about how I should approach this. Maybe I think too much, but it’s served me well so far. And so I am being very careful with my approach. Until the day I get fed up and just start announcing it to everyone, because I know that sooner or later, that will happen too.

Have you ever found yourself making a lot of new friends at once, but not in a single day? How do you handle whether or not to disclose, and how much detail to share?


%d bloggers like this: