Feeling a mysterious new contradiction

June 19, 2019

Last night I went to a Meetup group for the first time in 7 or 8 months. The folks there greeted me warmly and asked what I had been up to, and why I hadn’t been around. And the thing is, I found it hard to answer, even to myself.

I had been thinking about that before I went. At first, I was busy. Then I didn’t feel well. Then I felt better, but I was trying to catch up from not feeling well. It was never a priority – yes, there were times I could have gone but chose not to. But also, lately I have either been feeling too ill to go out, or else I’m feeling pretty good and I’m using that opportunity to catch up on household chores, fun projects, and spending time with close family and friends.

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Most recently, the surprising thing is that for the past month or so, I have been feeling so much better, while at the same time I feel that I am struggling more than usual. This is new to me, and hard to wrap my head around, much less describe to someone else. The closest I have come so far is a battery metaphor, since this is mostly related to energy and fatigue (though other symptoms play a role, too.) My battery never gets to 100% anymore, and probably never will. But lately I feel like I struggle to get my battery as high as it had been. If prior to the past month it sometimes got to 65% on good days, now it never gets above 50%.

But here’s the surprising part: it goes down more slowly. Before, it wouldn’t take much for me to go from 65% to 50% to 40%, but lately I feel like I can do a lot more at 50% before I drop down to 40% or lower. It’s an odd feeling. I’m more tired on my best days, but I can do more because I stay at 50% for a lot longer.

I want to know what this means. Is it a sign of improvement or a sign of deterioration? I believe it has to do with going off of an adrenal supplement. The goal was to stop the supplement for 2 weeks so I could take a test, then resume it. The first few days were horrible, but then I actually started to feel better. I had to put off the test for an extra week because of scheduling issues, and by then, I wanted to see what would happen. After all, I really did feel better than I had in a while. Now it’s been 5 weeks and I am anxiously waiting for the test results. What will they show? Will I need to go back on the supplement? Will I instead need the prescription that we were contemplating? Or is my body better off on its own? I am figuratively chewing my fingernails in anticipation.

My body is a series of mysteries. Sometimes there are answers, but far too often I never find out what is going on. I have learned to accept that for the less pressing issues (though sometimes I later find out they were more important than I had realized) but since fatigue has been my most disabling symptom for many years, this is tantalizingly close. I can almost feel the answer to the mystery dangling in front of me, but I can’t quite reach it. I am aching to know, though, if I am improving or deteriorating. Could I be on the verge of a breakthrough? Or is it the edge of a downward slide? Maybe the iron infusion that I had dreaded is having an affect? My fear is that the test won’t give conclusive results, and I won’t know why I feel this way or how to proceed. I should find out any day now, and until then all I can do is wait.

I see doctors constantly, and when they ask how I have been, it is almost always hard to explain. But now the answer is that I feel both better and worse at the same time. I hope they can help nudge towards more of the better.

 

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Yes, it’s a choice

June 11, 2019

One thing my therapist is helping me realize is that many of the things I do for my health are actually choices on my part. I often feel trapped, like I have no options, but that’s actually not true.

Take the party I went to recently. I put on my sexy new dress: tight, red, showing cleavage, and making me look hot. This is the sexiest dress I’ve owned, and I didn’t want to ruin the effect by wearing my big, bulky knee braces. So I made a choice: I didn’t wear them.

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The dress I wore with the knee braces I didn’t

I wear those knee braces every time I leave the house, but since I knew I wouldn’t be doing much walking, what if this time I didn’t? What’s the worst that would happen?

Well, long term I could do permanent damage by wearing away cartilage, but that wouldn’t be an issue for one evening. I would be in pain, but maybe that would be ok? I know the pain, and it would be manageable. I should still be able to drive home, which is the deal-breaker for me.

So I did it. I brought the braces with me, just in case, but I left them in the car. I wore cute sandals with my orthodics in them. The dress calls for heels, but I knew that level of pain wouldn’t be worthwhile. I’m better off in sneakers, but really didn’t want to do that. I wanted to look good, damn it!

I was in a lot of pain for the first part of the party. Eventually, though, I found a good balance between sitting and standing. It meant sometimes sitting when I would rather stand, but that happens a lot even when I wear the knee braces.

But it also meant that I felt good about the way I looked. I kept forgetting that I was “passing” as healthy, so when I asked a guy out on a date and he said yes, he didn’t know about my health issues. When I showed up to our date in a cute dress and knee braces, I had to explain. I wasn’t doing it to pass, though. I wasn’t trying to hide my health problems. No, I was simply trying to look good in my new dress. And what’s so bad about that?

It is a privilege that I was able to make that choice. I know that some day I might not be able to. But somewhere in the midst of everything, I realized something important: I wasn’t simply choosing to not wear my knee braces. I was choosing to boost my emotional health at the cost of my physical health. That was the true choice that I made.

Within two days my knee pain levels had returned to normal, but the memory of how I felt all dressed up has stayed with me. It’s spring now, and even though I wear skirts and dresses almost every day, I will be wearing my knee braces whenever I go out. That, too, is a choice that I am making. The thing I have to remember, though, is that it is a choice. I am choosing whether or not to do the thing that is best for my physical health. And occasionally, it best not to do that thing, and to give my mental health a boost instead.


Choosing convenience

May 20, 2019

Let’s face it, dealing with chronic illness takes a lot of time and effort. There are the myriad medical appointments, tests, and treatments. There’s handling the day-to-day symptoms. The flares just add to it all. And that’s on top of having fewer “good” hours in a day than most people. It’s exhausting and overwhelming at times.

That’s why, after many years, I have finally decided to choose convenient options without guilt whenever I need to. Yes, it’s better for the environment to use reusable containers instead of sandwich baggies, but I’m using the baggies when I need to. I will still use the reusable containers most of the time, but when I can’t fit all of the containers into my cooler to bring with me to the doctor appointment, or when I’m going to be out all day and I need more space in my bag, or when I need to make my bag as light as possible, or when I can’t keep up with the dishes then yes, I’m going to use the plastic baggies and then throw them away, and I won’t feel guilty about it.

Similarly, I should use rags when I’m cleaning. But that’s more to wash, more to deal with. So I will use paper towels at times and I won’t feel guilty about that. When I’m in a bad flare, I will use paper plates and plastic forks without guilt. I will run the air conditioner if that helps me to feel better. I will take extra long showers when that helps me. And I will do all of it without guilt.

I believe that every person on this planet has a responsibility to do what we can to preserve and improve our environment. But I am also aware that we have to accept our limits. And maybe one shouldn’t come at the cost of the other. I have been adhering to this new mindset for several weeks now and it has been freeing, not to mention helpful. Instead of doing what’s “right” or what I “should” do, I choose what makes the most sense at that moment. Sometimes I use the reusable containers, sometimes the sandwich bags and you know what? Either one is ok.

Now I’m wondering what types of things other folks choose for convenience, and I’d love to hear from you. Please share yours below! It would be good to add to my list and to give other readers more ideas, too. So what shortcuts do you take?


What a difference a haircut makes

May 20, 2019

I recently got a somewhat-drastic haircut, and was surprised by just how good it felt.

This wasn’t totally out of the blue. I had thought about cutting my hair super short for a while. I had it short many years ago, but since just before I got really sick I had grown it out, always having it somewhere between chin-length and almost shoulder-length. Recently I wanted to cut it but chickened out. Then a few weeks ago, as I pulled into the parking lot at SuperCuts (an inexpensive chain) it occurred to me that instead of a trim, I could do something different. I sat in the chair and asked the stylist I’d never met before to cut my hair really short. And she did! It came out even shorter than it had been a dozen years ago.

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Instead of my haircut, here’s a photo of an adorable furry dog cuddling with me.

I immediately loved it, but it was as I drove home that I questioned why I was downright ecstatic. I mean, it’s just a haircut, right? But it was more than that.

It was me making a conscious choice to change something about my body in a positive way, with no baggage attached. When was the last time I had done that?

Thanks to my chronic illnesses, I so often feel that I don’t have control of my body. A haircut is a small thing, but it’s still a thing I chose to do. And that feels good.


Insurance that won’t cover medication

May 10, 2019

I have always been financially independent, meaning I supported myself. I worked in nonprofit for my entire career, so I never earned a lot of money. Still, I lived frugally and made it work, while managing to save money. Then I became too sick to work. Suddenly, money became a big problem.

Social security, fuel assistance, and food stamps helped, but they weren’t enough. I was pulling money out of savings every month. Thankfully I had savings, and enough that I wasn’t on the verge of ruin, but not enough to last me indefinitely. I tried to work multiple times. Each time I increased my hours, I got sicker. Some weeks I could manage 5 hours of work. Some weeks 10 hours. But if I tried to work 10 hours per week for two weeks in a row, it was a disaster. Even 5 hours per week wasn’t sustainable over time.

Then last year, I got Section 8! (For those outside the U.S., Section 8 is a housing subsidy. These days, the wait list to get Section 8 can be 10 years or more, and the restrictions for using it are very strict. With this type of Section 8, you pay no more than 1/3 of your income on rent, and the government covers the rest.) I was in shock. I thought I would be on the waiting list for several more years, but out of the blue, I reached the top of the list. Finally, I could cover all of my basic expenses with my benefits! I would still have to take money out of savings if I wanted to go to the theater, eat dinner with friends, buy clothes, or pay for car repairs, but this was still a huge improvement. It lasted about a minute.

Less than two months later, I got kicked off of food stamps. They said I earned $20 per month over the limit. I had no idea where that number came from, because I wasn’t close to the limit. So I did the paperwork and sent it in. I got food stamps back, but the same month I started a new prescription. It has to be compounded, as probably all of my medications will have to be from now on. That’s the only way to get this particular medication without any corn or gluten in it, which is a medical necessity for me.

Unfortunately, Medicare doesn’t care that it’s a medical necessity; they refuse to cover compounds. At $150 per month, this is obviously not in my budget. I appeal and was denied. I found an amazing patient advocacy group that helped me with a second appeal at no cost. My patient advocate helped me in many ways and this time my appeal included a 1000 word letter about why I need this medication and how it helps me, a more thorough letter from my doctor, and more of my own medical records.

And I was denied. Again. I can continue to appeal but it won’t help. Compound medications by their very nature are not FDA approved, and Medicare won’t cover anything that isn’t FDA approved. So I’m stuck.

Again, the good news is that I can afford this. I have savings. The bad news is that savings only goes so far. And every time I need to add a new prescription (I will probably have another in the next month or so) it will most likely need to be compounded. The costs might vary, but it won’t be cheap.

I take a lot of supplements and visit a lot of medical professionals. I spend about $600 on healthcare despite having great insurance. I take only ONE prescription medication and yet my insurance won’t cover it, so now I need to increase my medical spending by 25% to cover this additional $150 per month.

For a few weeks I could cover my expenses without dipping into savings or having to ask my parents for money. It was glorious. If only Medicare worked the way it should, I would still be in that position. Instead, I am watching my savings slowly go down month after month and it’s terrifying. But I need this medication to live.

Now please excuse me, I need to go call in a refill of my medication.


Debating the line between private and public

April 27, 2019

Today I spent a while editing something I wrote that will be published in a book. Unlike this blog, though, it will be published under my real name. I have gotten so used to writing under Ms. Rants, that I’m feeling a bit confused about this.

In the past seven and a half years I have published 736 posts on this site – yikes! Before I looked it up just now, I guessed it was around 600. That’s a lot of writing, and a lot of posts, during which time I have gotten comfortable sharing a lot. I have spoken about strained relationships, deep fears, and incredibly embarrassing moments. Yes, I know that nothing online is ever completely anonymous, but it’s unlikely that someone will care enough to dig into this tiny little site that doesn’t even make any money to try and find the author, never mind actually make that information public. And if they did, what are the odds anyone would care? This book, on the other hand will be much more widely read, we think. My name will be out there and searchable. And that makes me question, what do I want to share?

This is a question we all make every day in a thousand tiny ways. Today I had to bring my car to the dealer for recall-related repair. What a pain in the butt. They said that at least I would get a voucher for free food from their cafe. This surprised me, and without thinking I said thanks, but that I couldn’t eat anything there because I have Celiac Disease. I didn’t have to say that. I could have said thank you and just left it at that. But I try to bring up Celiac Disease frequently as a way of educating people, and now it’s habit. I want people to hear about it in benign situations, where they don’t feel like “the whole gluten-free thing is blown out of proportion.” That way when they do hear someone requesting gluten-free food, maybe instead of judging that person as being “difficult” they will remember that Celiac is a real problem for real people and instead they might just have some compassion. No, I don’t expect to change minds with throw-away comments, but I figure if they hear it from multiple people, it could have an impact.

I often get asked why I wear knee braces, why I’m limping, or something else that is none of their business. How I answer depends on the person, the way they asked, and my mood. If I don’t feel well, they won’t get a nice answer. If I feel good and have time, and they seem nice and open, maybe I will explain a bit.

But these are all relatively anonymous. The car repair guy knew my name, but that’s just one person, to whom I told one small fact. Now I am considering telling a lot more of my story – my journey through symptoms, diagnosis, shitty doctors, supportive doctors, horrible insurance problems, and all the rest – and telling it to many more people. I don’t mention family or friends in the story, it’s just about me, so it is all my decision.

I always lean towards sharing more. I think we, all of us with chronic illness, will help each other the most by being honest. That is why I made this blog anonymous in the first place. By far the most popular posts on this blog are the ones I thought no one else would care about, and I worried about publishing them because they felt super private, but I did it. Every single time, the response was huge, with people thanking me for sharing because they could relate. So I want to be open and share.

But I am also aware of the world we live in. This is the world where I could get harassed for being on government benefits, put down for eating gluten-free, and generally maligned for being ill.

One day, a friend at my chronic pain support group came up to me and told me she liked my blog. I was confused. It turns out, she had read this site and recognized that it was me. I felt exposed. But this would be different. I would go into it openly, knowingly.

I will share a lot in my story. I will be open about many things. But as I read those words again this morning, I had to ask myself, just how open do I want to be? Because once it’s out there, in a book, there’s no taking it back. And while I want to use my situation to help others, there’s a line. I just wish I knew where it was.

Have any of you had to deal with this decision of how much to make public on a larger scale? How do you decide? Please comment below, because I’d love to know! And if you’ve had to deal with this decision (and I’m sure you have, because we all have!) I would love to hear about that too. How do you decide?


Normalizing the horrid ways I’ve been treated

April 13, 2019

For seven months my therapist has spoken with a woman who fights hard for her health, who does her own research, fights with insurance companies, argues for the tests she needs, pushes her way in to seeing the best doctors. So it’s no surprise that when I expressed my fear that I might one day just give up the fight, my therapist asked a question to which she thought she knew the answer: “But is there really any chance that you will give up?”

She definitely looked surprised when I said yes, but it was the look on her face when I told her why that surprised me.

Here in Massachusetts, there’s a large doctor network (Harvard Vanguard now, previously called Harvard Community Health Plan for you local folks) where the doctors refer patients within the network, read each other’s notes about patients, see each other’s patient test results, etc. These days this isn’t so unusual, but back in the 80s and 90s it was. Going to these doctors seemed like a good thing, because they communicated with each other. I spent my entire childhood and my early adulthood there.

When my therapist asked if I might really give up I said yes, because it’s so exhausting to keep fighting. And who knows if getting better is even an option? Sometimes I really want to just give up, to say that this as good as it’s going to get and I’ll maintain what I have, but there’s no point in trying for more. And then I do it anyway. Even though it’s exhausting and all-consuming and overwhelming. But maybe one day I won’t. After all, I gave up once before.

I’m not talking about taking short breaks, while knowing I will resume the fight again in a few weeks or a few months. I’m talking about actually giving up, choosing to stop trying altogether. After all, it’s what the doctor told me to do.

I had been undiagnosed for around 7 or 8 years. I had seen many doctors and even had exploratory surgery which yielded no answers but did manage to permanently increase the pain. Sadly, one downside of that doctor network is that I only saw the doctors that I was referred to, and I was referred to the ones who could properly diagnose me, like a rheumatologist. That would have been very helpful. Instead I saw surgeons, orthopedists, and other specialists who didn’t have any answers. Of course, I was also sent to a psychologist, but that didn’t help the pain for now-obvious reasons.

I will never forget the day, almost 20 years ago now, when I saw yet another doctor for yet another opinion, endured yet another painful examination, and was told to stop coming in. She didn’t mean I should stop coming to her office, but to the entire network of doctors. She made that very clear. And since the other doctors hadn’t been able to help, had been condescending when I suggested that perhaps my different symptoms were related (it was years later that I found out they were in fact related, and earlier treatment could have helped a lot,) and generally hadn’t tried to help me if there was no immediately obvious problem they could name, I gave up. I was done.

For a couple of years I stopped seeing doctors for anything more than annual checkups and acute situations. I didn’t even consider attempting to get better. I would simply be in horrible pain every minute of every day for the rest of my life.

Obviously that didn’t last forever and one day, practically out of the blue, I decided to take advantage of my ability to see a doctor without a referral for the first time in my life. I found a rheumatologist and was diagnosed within a week of that visit with an autoimmune condition. It was my first correct diagnosis. But before that, I had given up.

You would think my point in telling you this would be to show the value of self-advocacy, doing our own research, etc. That’s not my point today. That has been my point in many other posts and it will be in many more to come, but today my focus is on how I have normalized that horrible incident with the uncompassionate doctor. When I casually mentioned that the doctor had said I should stop coming in, I saw the look of horror on my therapist’s face. She’s not naive. She has worked in the medical system for many years. She knows this kind of things happens, but she hasn’t normalized it like I have.

That’s not to say I think it’s ok. And if someone dared say that to me again, I would react very differently now, that’s for sure. I certainly wouldn’t stand for anyone saying that to someone I care about. But back then, I was scared and shy and tired of trying, so I accepted it. And over the years I have seen and experienced so many forms of terrible treatment by medical professions and by the systems that are meant to support our health that I am no longer stunned. I am sickened and angry, but no surprised.

I don’t like that I have become so jaded, but I guess that is what 27 years of chronic illness does, at least in the U.S. medical and benefits systems. And what I find even sadder is, I know I’m not the only one.


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