The government is voting to kill us

March 15, 2017

On the one hand I don’t want this blog to get too political. On the other hand, how can I not discuss politics when the government is talking about taking healthcare away from millions of people!?

There is a lot I want to say, and I can’t say it all at this moment, but rest assured I will be back to discuss it another day!

For today I want to talk about this feeling that the government is trying to kill us, and how healthy, working people respond to that.

You see, I have said many times that the government is trying to kill us. If you don’t know what I’m talking about, look at that link above. Many healthy friends with jobs think it’s an exaggeration. Most of them will have health insurance through their employers. It might cost more, but they can make up the difference if they cut back in other areas. They hate it, but it won’t kill them.

And if they did lose their insurance, it would suck, but they could cough up the money for the occasional doctor visit or antibiotic. They would hate it, but it wouldn’t kill them.

Then there are people like me. I’m not nearly as well off as they are, but not as badly off as many of my other friends. Because most of my health conditions are pretty stable. If I miss a medication for a few months my health would decline, but I wouldn’t die immediately. I have savings and supportive parents who can afford to help me to a certain extent. We could find a way to cover my more basic health costs for many years. And maybe I would skip seeing the doctors who didn’t feel entirely necessary (though really, I try not to see doctors unless it’s necessary!) And hopefully, eventually, a new political party in office would fix things. We could cover the gap. Besides, I am likely to have some insurance coverage, even though it would be greatly reduced.

But then there are other friends of mine, not to mention the many strangers I have never met. These are people who do not have safety nets. They are more likely to lose their insurance altogether and they do not have the money to cover the costs. For these people, there will be no way to see a doctor or take a prescription. Even worse, many of them have illnesses that will quickly kill them.

These are limited examples, of course. I’m not getting into the many thousands who will become bankrupt and the many other thousands who will have to quit their jobs due to poor health.

These are horrible circumstances. Any reasonable person is upset by this. And then we remember…. our politicians are the ones who want to do this to us. A handful of people with high salaries and kick-ass health insurance (congresspeople have the best health insurance in the country) are deciding whether people like me will be able to see the doctors we need to see.

If you’ve been reading this blog from the beginning, then you know I was working when I started it. I hated to leave my job, but there was no way I could continue to work. I spent years fighting for the benefits I had paid for and deserved. It was a miserable road and I was horribly sick. Now, finally, my health is improving! It is not perfect by any means, but it’s so much better! I’m even looking for ways to start doing a little bit of paid work. This new health insurance situation could destroy that progress. It could stop me from earning any money at all. It could dash my dreams permanently, by making my health worse in a way I might not be able to recover from.

If that sounds dramatic, good! Because it IS dramatic! We are talking about taking away the ability for people to care for their health.

Healthcare should be a right, not a privilege reserved for the rich. But that is what the republicans in this country want. They want to give more money to the rich even if it means killing the poor.

They should be ashamed of themselves. They are voting to kill us.


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.

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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.


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?


Using instinct to set limitations

October 31, 2016

Sometimes there’s no good answer to “Why can’t you do that?” It’s not as simple as “My doctor told me not to” or “I’ll be in too much pain.” Sometimes it’s a gut instinct response. I just know it’s a bad idea, even though I can’t put into words exactly why.

That’s how I feel about traveling right now. I think I can do it. I tell myself I’m ready. But when it comes to it, I feel like I shouldn’t. For a while I thought fear was holding me back. And it is. That’s definitely part of it, but not all of it.

Last weekend was a good example. I did everything “right.” I packed my bag in advance as much as I could. I took an extra adrenal supplement. I took various other supplements and medications that I thought would help. And they did. That’s why I felt horribly ill, but not so bad that I started to think death might be better. That’s the difference: I didn’t think about death.

So it was an improvement, but it still wasn’t fantastic. I felt like crap for hours, despite being super careful. I monitored and moderated my activity levels. I did everything right. But it wasn’t enough.

Last weekend’s trip involved a 3 hour drive – and someone else drove.

What would happen if I flew 5 hours? A friend wants me to visit. They’ve offered to pay for the plane ticket for me. I’d love to visit, but is it worth it? It’s a long flight. In tiny, uncomfortable seats. It could be longer if the flight is delayed. There’s time in the airport, plus getting to and from the airport. There’s the time change – a 3 hour difference.

How would I feel? Worse than after a drive? Certainly. I wouldn’t be able to bring cannabis on the plane with me, so that would make the following hours significantly worse.

In the end, though, I’d survive it. I always have. So why not go?

Because my gut tells me not to. My instinct is that I’d feel horrible for at least a few days, and by the time I started to feel more or less like myself, I’d be on the plane back home. It’s not worth it. Not now, at least.

The problem is that it’s hard to explain all of this in a way that makes sense to other people. I try, and they say I should just do it and it will be fine. I’m letting my fear stop me. I’m thinking about it too much. I should just go and have fun.

That all sounds great. But they don’t live in my body. I know my body. And I’d rather follow my instinct.

Do you have times you follow your instinct and can’t put the reasons into words? How do you explain those things to people? Please comment and share your experiences!


Feeling guilty for feeling better

October 26, 2016

These friends are some of the only people in my life who knew me before the symptoms began. They understand more than most. But some things are still so hard to explain.

We were sharing all sorts of things, and I started to talk about my support group, and some of the emotions that come up when I’m there. I talked about many things, but it was my talk of feeling guilty that they latched on to. They tried to convince me that I shouldn’t feel guilty.

Easier said than done.

The thing is, I know I shouldn’t feel guilty. I know it in my head, but my gut feels guilty anyway. One friend put it best: it’s like survivor’s guilt. Why should I have improvement when someone else doesn’t? Still, they didn’t truly understand why I would feel guilty.

But I do.

I look around at my friends and acquaintances who are sicker than me, or who are in more pain, or who have a worse prognosis, and I feel guilty that I’m doing better. When I was much sicker just a few years ago, I sometimes resented and often envied the people whose health had improved. Now I’m one of them. And it’s not because I worked harder at it or am more deserving. Sure, I worked my butt off, but a lot of it is luck. Some people have illnesses that will never improve. I was lucky to not be one of them (though for a while I believed I was.)

I will never be completely healthy. I don’t expect healthy people to feel guilty around me. But I do feel guilty when I can carry something that a friend can’t, or I can go to an event that they can’t. And I’m jealous when a friend with chronic illnesses can do things that I can’t.

It’s a process, though. I have had to deal with many difficult emotions surrounding these health issues for most of my life. Over the years I have dealt with many of them. Yes, I need to deal with the guilt, but it’s ok that it will take some time. It’s ok.

I appreciate my friends’ intentions. They want what’s best for me, and they feel that doesn’t include feeling guilty for being less ill or less disabled than someone else. And they’re right. But it’s not that simple. I need to work through the guilt in my own time. And I know I’m not the only one.

I’m sure others feel guilty at times, too. Are you one of them? It would be awesome if you would share your own feelings around guilt in the comments. I think I would really benefit from hearing about other people’s experiences. Sometimes knowing I’m not the only one going through something can make all the difference in the world.


Because I have chronic illnesses too

June 9, 2016

I have a problem setting boundaries. I know this, and I’m working on it, but it’s still a problem. The thing is, I like helping people, and that sometimes gets in the way.

Part of it is altruistic – I like seeing others benefit. Part of it is selfish: when I feel like there’s so much I can’t do in my life, it feels so good to do something that others find useful. But whatever the motivation, I have limitations, just like anyone else. I have limitations of time, ability, and energy. But on top of those, I also have limitations because of my health.

Lately this has come up a few times, and I’m handling it poorly. I know I could do better, but I’m not sure how.

We all have differently limitations and abilities, and that includes those of us in the chronic illness community. One person has more energy, another can climb stairs, another can walk more, another has greater cognitive function. It’s easy to forget that those abilities don’t preclude other limitations. I’ve been guilty of it myself. I see someone who walks a lot, and I forget that while they don’t have fatigue, they do have pain, for example. And now I’m on the receiving end of that.

I’ve been volunteering to help people in my chronic pain support group with a few things. I want to help, but I also have to be careful of my own limitations. I try hard not to commit to doing more than I can reasonably handle. The problem is, sometimes people ask for more. And that’s where the boundary issues come in.

Several times lately, people have assumed that I would do more than I had offered to do. I think they see me having certain abilities, and they forget about my limitations. Then when I say no, they ask why.

I offered to teach an informal class on using Facebook. There are so many great Facebook groups for people with all sorts of chronic illnesses, and I’d even set up a Facebook group for our support group. I knew a lot of people struggled with it, so offering a lesson seemed like a good idea. The problem was that several people said, “I can’t make it to that lesson, so when else can we meet?” I was stunned! I couldn’t give private lessons to everyone! Just that one class was exhausting. I didn’t leave the house for two days after that. But no one saw that part.

Finally I sent around an email saying that I’d be happy to give private lessons on a schedule that worked for me if people wanted to pay me. That ended most of the discussion, though one person still said she couldn’t afford to pay me but still wanted to meet because she needed help. I get that. I often need help that I can’t afford to pay for. So I don’t do it. I simply can’t help so many people. It’s not within my abilities.

I’ve been doing a lot of other tech support for the group. One person asked me to do some things and I finally said no, but that I’d be happy to show her how to do it. She asked why I couldn’t do it. I finally was direct: “Because I also have chronic illnesses and I don’t have the energy for it.” She said she’d find someone else to help.

I wasn’t trying to be rude or difficult or uncooperative. But I think people forget that doing seemingly easy things, like typing into a computer, can be downright exhausting for some of us. It can be painful for others. For some, it’s both. And just because I can do 10 things, doesn’t mean I can handle 11. Just because I can leave the house for 1 lesson doesn’t mean I can handle 5.

Many of my friends with chronic pain and chronic illness have visible illnesses. Mine isn’t visible unless you really look. You might notice a wince, a limp, or a stumble, but most of the time, I look just fine. So in some ways I understand why people forget and expect more of me.

Then again, when it’s someone with a chronic illness who asks me why I won’t do something extra, I just want to shout: BECAUSE I HAVE CHRONIC ILLNESSES TOO! JUST LIKE YOU!

Do you encounter this? How do you handle it? Please comment and let me know your experience!


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