When I’ll feel Covid-safe around people

August 26, 2022

Two-and-a-half years into this damn pandemic, I’m still spending a whole lot of time alone, and it’s hard. I miss people. I miss regular socialization. I miss dating. Actually no, I don’t like dating. But I miss the potential for a relationship. I miss sex. I miss casually hanging out at a friend’s house, going to the theater, visiting to a museum, not having to rely on New England’s unpredictable weather to determine if I’ll get to see people. I miss parties and Meetup groups and all the other random in-person indoor stuff that I took for granted.

Yet, so many people are out in the world, acting like there’s no pandemic anymore, or like getting Covid is no big deal. Most others seem to be somewhere in the middle, being somewhat cautious but still socializing and attending work and school in person. A lot of my family and friends in the middle have been asking me when, if ever, I’ll be willing to go out again. I think they expect this question to trip me up, to prove that my expectations are unreasonable.

But the truth is, I have a mental list going of things that will make me feel safe enough to join my family for Thanksgiving dinner or to go to a play, and they aren’t at all unrealistic. I just wish they would happen sooner than they probably will. Here are some of mine and I’d love to hear yours, so I know what other excellent possibilities are out there.

  1. Widespread mask use. This wouldn’t make me feel comfortable in all situations, but in many. Today I called a dozen hair salons and the only ones that have people wearing masks are out of my price range. The others say they don’t have any protocols, no masks. WHY NOT?!?!? The pandemic is not over and they’re only prolonging things and making it harder for people like me. If everyone wore masks I still wouldn’t go to the theater, but I’d feel more comfortable at the grocery store. Please please please wear masks, people!
  2. Masks that 100% (or maybe 99%) protect the wearer. Speaking of masks, this would be huge. I’d feel much better about the 90% of unmasked grocery shoppers in the store with me if I knew that my own mask would provide all the protection I needed. Then I wouldn’t have to rely on others so much to protect my own health. Of course, these would also have to be affordable and widely available. And if they were reusable, that would be even better!
  3. Accurate tests. If at-home tests gave fewer false negatives, and if they gave positives as soon as someone was contagious, I would 100% be hanging out indoors with family and friends. Would I go to crowded events with strangers? Nope! But at least I’d get to be around people I love. And it would open up dating possibilities, too. I still wouldn’t want to go to restaurants, etc. on dates, but at least as we got to know each other, I’d feel safer being indoors alone and maybe even kissing *gasp!*
  4. Vaccines that prevent contracting Covid and/or transmission of Covid. Back in 2020, we thought vaccines would save us. We talked about herd immunity. The problem was that the vaccines we got don’t prevent anyone from getting Covid or from passing it along to others. Don’t get me wrong, I’m thrilled we got vaccines that reduce the likelihood of hospitalization and/or death. I just want more. If we had vaccines that stopped people from spreading Covid, I’d be hanging out with my vaccinated family and friends, because I wouldn’t have to worried about them giving it to me or about me giving it to them. If we had vaccines that stopped people from getting Covid at all, I’d be feeling much safer as I go out in the world, and then I’d probably go back to being in public spaces again.
  5. Vaccines that prevent long Covid and disease latency. It’s hard for me to explain to most people that I’m not worried about dying from Covid. I’m most worried about getting long Covid. And right now, the vaccines help me avoid dying, but they don’t help me avoid long Covid. I wish they did. Honestly, if long Covid didn’t exist and if we didn’t have a concern about disease latency (when symptoms might appear years or even decades later, like with post-polio syndrome), then I wouldn’t be so concerned and I’d be happy to at least be around family and friends, and I would consider being out in public spaces more. For me, this would be a gamechanger in a way that I find hard to explain to most people.
  6. A near miss: a cure for long Covid. To be honest, I’m not sure how much this would help at this point. Before I was worried about disease latency, a long Covid cure would have been enough to get me out and about again but now, unless it would also cure any future symptoms, I don’t think it would do the trick for me. There’s just too much at stake with the disease latency risk. I watched a loved one deal with post polio syndrome for years and the possibilities with Covid latency feel too real to me.

So that’s my current list. I think that some of these are more likely in the short term than others. #5 would be amazing, but I’m not holding my breath for that one any time soon. #4 feels more likely, but only if we don’t lose momentum in terms of funding research and innovation. The ship has sailed on #1. Let’s face it, too many people are selfish assholes. They don’t believe they’ll get sick and don’t care of others do. But #2 and #3 feel like they have potential, even in the near future.

Experts are already working on creating more accurate tests. Imagine what a gamechanger that would be! Sure, I still wouldn’t want to hang out with a lot of strangers, but it would open the door to feeling comfortable with family and friends. I’m thinking about all of the people I’d want to see who, right now, I’m not visiting with indoors. It would be amazing!

I don’t know if anyone is working on creating masks that better protect the wearer, but I sure hope that they are! I’d love to have more control over my own safety. Not only would I be able to spend more time with family and friends, but I’d feel more comfortable around strangers, too. No, this wouldn’t be the perfect solution, but it would open up the world for me and at this moment, that would be enough.

Even before the pandemic, I struggled with loneliness. I’m an extrovert who lives alone and who, due to health issues, often doesn’t go out for days at a time. I’m at an age where my friends are mostly married and have kids in addition to working full time, so they are understandably busy with their families when they aren’t at work. I get it, but it also makes it harder for me to spend time with them. That left me spending a lot of time home alone, taking walks alone, and doing activities alone. And that was before the pandemic. Now I’m so much more isolated and damn it, I just want to be around people! I want to spend the weekend with friends out of town, hug my mom, kiss a date, go to a party, and feel safe wandering the aisles of the craft store. Is that so much to ask?

For now, though, I’m sitting at home. Today I’m seeing a friend – via Zoom. It’s not the same, but it will have to do. And despite what so many others think, I’m not planning to sit at home alone forever. I am not wrapped up in fear with no foreseeable way out. I see a way out. I just need scientists to make it happen. Please.

What about you? In what ways do you think there could be a safe way for those of us who are at higher risk to socialize again? I’d love to hear your ideas!

2 Comments | Expectations, Frustration, Isolation, Rants | Permalink
Posted by chronicrants

I’m ok but not really

July 15, 2022

Maybe it’s my imagination, but lately it seems that people are asking, “How are you?” more than usual. I’ve hated this question for decades. I feel stuck when people ask: do they really want to know? If so, how much should I share? This issue isn’t new to anyone with chronic illness. I’ve written about it before, as have a lot of other folks. But these days, I’m dealing with something else: normalizing my own not-okay-ness.

Let’s start with my real answer to “How are you?”, what I’d say if I were being honest with them and with myself, and then I’ll break things down.

I’m fine. Ok, I’m not really fine, but I’m fine enough, you know? I’m getting by. I’m surviving day-to-day and it’s good enough. I mean, sure, it’s not really good enough, but it’s as good enough as it can be right now, you know? It’s doable. I’m overwhelmed. I’m exhausted. I’m doing an elimination diet that is stressful and overwhelming. I’ve going to in-person occupational therapy twice a week which is a lot logistically, and that’s before you account for doing the exercises at home every day. It’s supposed to be twice a day but I. Just. Can’t. I’m still trying to do my physical therapy every day. I’m exhausted, did I mention that? I haven’t slept well these last few… days? weeks? And I’ve been having nightmares since the pandemic began, too. I’m anemic and my thyroid levels are off. Those two are probably related. I’ve waited months and I’m finally getting an iron infusion next week, since supplements don’t work (no, I don’t know why I can’t seem to absorb certain nutrients) and I’ve had bad experiences with the infusions in the past so I’m really nervous. The last two times I brought someone with me but with the pandemic, I can’t do that this time. I wish I could bring a dog to cuddle. Anyway, I’ll be glad to get that over-with, but it can take weeks, or even months, to feel the effects. Oh, and I got my period this week so I was extra emotional and I lost a lot of blood. I had to spend time washing blood out of clothes and going to the bathroom every hour or two to deal with it. I’m sure that’s not helping with the anemia, either. Did I mention the new pain I’m having? And the two new diagnoses I got this week? I might have forgotten that. And it’s summer and while for some reason I hoped it would be different this time, it’s not. The heat and humidity bring additional pain, and it sucks. And Covid cases are soaring and people still aren’t wearing masks which is so damn disrespectful. Plus several friends have told me big secrets recently and I really want to talk those things through with someone but I can’t because they’re not my secrets and eventually it’ll all come out but it could be a long time and meanwhile I keep worry about these people that I love so much. All I want to do is sit on my couch and read a good book, watch movies, and crochet. But I can’t. I have to do my occupational therapy and physical therapy and prepare meals and go to appointments and do housework and try to do at least a little bit of volunteer and paid work. But you know, I’m fine. Because I feel like I have to be. I’m getting by, one day at a time, and that’s enough, right?

That’s what I want to say. But I never do. Some people hear bits and pieces. I’ll tell a friend that my heavy period is probably making my anemia worse and is probably why I’m extra fatigued this week. Several folks know about the stress around the elimination diet. A few know about this and others know about that and some don’t know anything because I just don’t even want to deal with answering a bunch of follow-up questions. And through it all, when a good friend who also has chronic illness asked this week how I was doing, my answer was still to say that I was fine. Sure, this was partly because I just didn’t want to talk about all of the crap I’m dealing with. It was partly because I didn’t want to bother her with everything. But it was also partly because I truly believed for a moment that I was fine, or at least fine enough.

Even I can tell that I’m really not fine. Come on, look at that answer above. That is not a “fine” answer. But I’m continuing to live my life, and it’s giving me the illusion that I’m ok. I’m so tired that I’m not processing my feelings, I’m just pushing them aside. It’s the exact opposite of what I’ve been learning in therapy but at the same time, even my therapist agrees that sometimes I need to compartmentalize. Sometimes it’s helpful for self-preservation.

And maybe that’s what believing I’m “fine” is all about right now: self-preservation. Because if I think too much about the many ways that I am so obviously not at all “fine” then I may loose my shit. And frankly, I’m too tired to have the really good crying session that I probably need right now.

I think that sometimes we need to give ourselves the illusion that we’re doing okay as a way of surviving it all. I feel like it’s ok to do this, as long as it doesn’t last too long, and as long as I recognize what it is that I’m doing. At first I really believed I was ok. Now I see it for the facade it always was, but I’m still using it, holding up the shield of fine-ness while knowing the shield is fake. Eventually everything will break through (probably at my therapy session next week, the first in several weeks due to my therapist’s vacation) and then I can hopefully go back to seeing the truth. But until then, I’ll keep hiding behind my fake shield, because at least it’s helping me to get through each day.

Does anyone else do this? Do you ever truly believe you’re fine, even for a minute, when it’s obvious that you’re really not? Does it help? I’m curious to hear others’ perspectives and experiences.

2 Comments | Expectations, Fatigue, Frustration, Limitations, Pain, Rants | Permalink
Posted by chronicrants

Finding my muse

May 30, 2022

After 11 years of writing this blog regularly, I was surprised recently to discover that I didn’t write anything last month at all. I figured I would make up for it this month, but somehow time has passed and the month is nearly over. It’s not like I didn’t have anything to say about chronic illness. I always have something to say about chronic illness. But sometimes putting it all into words isn’t easy.

This blog has given me a lot. It has provided catharsis has helped more than I expected. It’s been a source of great advice from wonderful readers. It has been a wonderful way to connect with others who have chronic illnesses. It’s also been a diary of my journey. I started writing this blog just a few months before I had to leave my job. I wrote about health insurance issues, applying for disability benefits, and more. When my memory is fuzzy and I’m not sure when or how things happened, I can look back to this blog. Several people have asked me to write a memoir and if I do that, this public diary of sorts will be incredibly helpful. This blog has also given me the confidence to not immediately dismiss the idea of writing a memoir. For some reason, you all have been following my journey and want to read more, so maybe it would be helpful for others also.

Meanwhile, I slowed down writing this blog when I was working on a different chronic illness-related project and I needed to reign things in. But then the other project ended and I suppose I felt burnt out, so my writing remained slow. Still, I’ve had chronic illness on my mind. As always.

I’m looking at the next few weeks and wondering how I’ll fit everything in: a mammogram, an eye appointment (I get seen more often than I otherwise should due to risk factors from medications I’ve taken), therapy, physical therapy, occupational therapy, dietician, job-type stuff, social stuff…. it’s a lot. That’s on top of keeping a food journal all day every day and putting a lot of effort into figuring out what to eat and when, thanks to my current temporary elimination diet. Meanwhile, for the past two months I’ve been applying for rescue dogs (yay!) It’s hard, constantly being told that a dog isn’t local or that there’s already a long line for them. Now there’s an excellent dog who I may be able to adopt. I haven’t met him yet and it might not work out, but just the idea of possibly taking in a dog next week has me on edge. How on earth would I balance those early, more difficult weeks of having a new dog with all of these appointments? And yet, how could I not adopt him if I think he’s a good match?

Meanwhile, I’m sitting at my desk, very aware of the pain in my hands (hence the upcoming OT), the worsening pain in my toes (that I’ve had for 20 years and that no one has been able to explain), and the sweat drying on my body because I took a walk on what everyone else calls a pleasant day and I call way too hot. I want to take a cold shower but also dislike cold showers. I want to continue listening to my excellent audiobook, but also feel gross and want to clean up. I want to finish writing and editing this post, but should get up to take medication. I want to rest, but know that I need to eat lunch soon to stay on schedule and not mess up the timing of my afternoon medications. Even moment-to-moment, chronic illness can be hard to forget. (Typing this, I realized that I really did need to get up and take my medication, so I did. I was surprised how much worse the pain in my toes has gotten in the hour that I’ve been sitting down. Ouch! I’ll be doing lots of sitting today!)

Today is a holiday in the U.S. and it’s quiet in my neighborhood. Few people have walked by, which is unusual. Neighbors are travelling for the long weekend. I have no place to go, and no one to go with. But I want to travel. I miss travel. Will I ever feel save travelling again? Will they ever figure out how to prevent and/or treat long Covid? Because that is what’s stopping me from travelling right now. I’m not worried about Covid killing me as much as I’m worried about getting long Covid. I definitely don’t need additional chronic health problems!

And yet, aside from travel, I’m still not sure what’s safe. June is Pride month, and there are so many events I want to attend. Many are hard to get to without public transportation (definitely something I want to avoid during the pandemic), but I thought I might attempt a few that I could reach by car. And then I heard reports of people getting Covid from outdoor gatherings, and now I’m not sure that’s safe. I haven’t attended any Pride celebrations in 3 years, and I miss it so much. Pride is a big deal for the LGBTQ+ community, and I want to be around my people. But is it safe?

These are just the thoughts I’ve had this morning. Like I said, my lack of writing isn’t due to a lack of thoughts about my life with chronic illness. And frankly, this is just the tip of the iceberg. There’s so much more I’ve been thinking about, too. But writing takes time and emotional energy, and sometimes I don’t have that. Sometimes I have the time and energy but the muse isn’t with me. Some of my posts over the years haven’t been well organized. Some are filled with typos. But even the error-filled posts – hell, especially those posts – have been the result of a flow of ideas that is hard to stop. When I’m not in the zone, though, I generally don’t like what I write, or more likely I never even begin. I guess the muse simply hasn’t been visiting me the last few months, but that’s ok. This is post #794, so I guess after nearly 800 posts, I deserved a bit of a break. I’m still around, though, so you’ll be hearing from me again.

Until then, I hope that you all are doing as well as possible, and that you’re giving yourselves breaks when you need them. After all, we all deserve to take breaks.

I’d love to hear from you: should I write a memoir? And if so, why would you want to read it? What would you want to get from it? And on the topic of giving ourselves breaks, what’s one nice thing you’ll do for yourself today? Personally, I’m going to spend extra time listening to my audiobook because while I know how it will end (of course the couple will end up together) I’m still excited to hear how it happens.

2 Comments | Uncategorized | Permalink
Posted by chronicrants

Not every specialist can handle every problem

March 25, 2022

Me: “Do any of your practitioners specialize in PCOS?”
Receptionist: “Any of our ob/gyns can work with that.”
Me: “Ok, but do any of them specialize in it?”
Receptionist: “No, but they’ve all seen patients with PCOS.”

I had this conversation earlier this week, but I can’t even count how many times I’ve had versions of this same interaction. Why do offices just not understand that “we’ve worked with patients with X condition” is not at all the same as specializing in it? This would be like asking, “Do you specialize in brain injuries?” and being told, “Yes, we have patients with brains.” No, not the same thing.

I am so frustrated right now. Two of my main practitioners have recently left. One retired and the other left suddenly due to a family emergency. Between the two of them, they treated my thyroid issues, my adrenal issues, and my PCOS. They treated all of my most active conditions except for the sleep apnea. And now they are both gone. They worked in the same practice, a practice that is no longer as big and robust as it once was.

When I first began there 7 or 8 years ago, there were many practitioners to choose from. I went there because of the doctor who was recommended to me by several people for his thyroid disease treatments. He referred me to the other for my PCOS issues. But now there are few practitioners remaining, the ones who are there just don’t have the approach that I need. What made this practice so special is that they focused on integrative medicine. Integrative medicine combines conventional medicine and complementary medicine. For example, look at my adrenal issues. Conventional medicine says that I don’t need any treatment. Without treatment, I can barely function. Conventional medicine says that I should treat the problem with dietary and lifestyle changes, plus supplements. I tried this approach for years and had some improvement, but not enough, and was really struggling. With an integrative medicine approach, I’m taking medication that has given me back my life. Do I have the energy and health of others my age? No, I do not. But I’m doing a hell of a lot better than I had been without the medication!

Unfortunately, I keep running into roadblocks. There are fewer and fewer integrative medicine doctors around my area who take my health insurance. Many take insurance, but only private insurance. I’m on Medicare (federal health insurance) and Medicaid (state health insurance that mostly covers the things that Medicare does not.) Many don’t take Medicare and of the ones that do, they don’t take Medicaid. I’ve thought about paying out of pocket, but that would get very expensive, and I don’t know if I should attempt that. This week someone suggested that it might be worth it for me to pay for a private secondary insurance, but the enrollment period ends next week and I’m trying to research my options, but I haven’t made much progress.

I know the local hospitals will take my insurance, but they usually stick with conventional medicine and that just won’t work for me. But you never know, right? So fine, I set up an appointment at the office I mentioned at the start. Then I Googled the person I was supposed to see. I found her online easily enough.

Her specialties: cardiovascular issues and high-risk obstetrics.

My need: I haven’t gotten my period in quite a while and need someone to order an ultrasound to check my uterine lining. If it’s too thick, then we need to figure out how to induce my period without messing up any of my other hormones.

Any doctor can (and hopefully would!) order the ultrasound, but how would they induce my period? In my experience, they would prescribe birth control pills. That has disaster written all over it. I need someone with a lot of experience in this area. Is it possible the person whose specialties are cardiovascular issues and high-risk obstetrics can help me? Sure. But is it likely? I highly doubt it.

I cancelled the appointment and will go back to making phone calls. Finding a practitioner to treat my PCOS isn’t nearly as urgent as finding one to treat my thyroid and adrenal issues, but it should be easier, and I’m hoping that whoever I find for one issue my recommend practitioners to treat the others. I just hope they take my insurance.

Note: I am writing about this fairly calmly, but in truth I’m very upset. I have spent a lot of time stressing, crying, researching, and crying some more. I’m terrified that I won’t be able to find anyway. It feels as those my options have shrunk a lot in recent years, and I’m worried about that trend continuing. Maybe another day I’ll write about the emotional side of all of this. For now, I just wanted to discuss that it’s happening in general.

4 Comments | Frustration, Healthcare, Medication, Rants | Permalink
Posted by chronicrants

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