Getting ready to date

March 20, 2017

I’ve been super busy. Well, super busy for me, anyway. I have fewer “good” hours in a day than a healthy person, and they get filled up way too easily.

Which makes me wonder how I’ll manage to go on any dates.

I have written about dating on here many times. It’s not my favorite thing. I want a relationship, but I don’t want to date. First dates are difficult, tiring, time consuming. They’re full of small talk and uneasy silences at worst, and uncertainty at best.

I used to date a lot, but for the past 2 years I barely have. There are a lot of reasons for this, mostly having to do with bad breakups, a lack of energy, and different priorities. If I’m going to spend my  energy going out with people, I’d rather go out with friends. After all, I don’t see my friends enough anyway.

The thing is, that leaves me single and alone. I don’t mind being single and alone overall, actually. It’s really very nice in a lot of ways. But sometimes I want a companion. I want a best friend. I want sex.

So I’m trying to get back out there. Last month I went to a singles’ event and met two very nice people. The first was funny and interesting and smart… and self-centered. He never asked a single question about me. I knew all about his hobbies, his job, where he went to school. He doesn’t know any of that about me.

The next was cut and sweet and kind and lovely and said she’d like to be friends. Ouch.

So now what? I have two choices. I can sign up for OK Cupid or another site, which I really don’t want to do. I’m not a fan for a whole lot of reasons. Or I can try to meet someone in person, which hasn’t exactly gone well for me (see above: almost no dates for 2 years – and I wasn’t turning anyone down.)

I need to learn to flirt. At some point I stopped flirting, and it’s like I forgot how. I need to dress better – not easy when the clothing budget is $0. I need to make an effort.

An effort.

As if I don’t already make an effort every minute of every day. As if simply getting dressed and putting on minimal makeup and driving to meet someone and holding up my end of a conversation isn’t effort enough. As if dealing with my health isn’t effort enough.

But if I want to date, what choice do I have?

So I’m going to try. I’m going to dive back into the world of trying to flirt on a first date while also debating whether or not to hint at my health issues. I’m going to skip out on things during the day so I can have a simple coffee date in the evening. I’m going to go back into the world of suggesting alternatives to all of the dates that someone suggests which I know I can’t manage, without telling them why I’d rather sit in a coffee shop than enjoy an outdoor picnic. I’m going to go back to avoiding kisses on the first date because I haven’t yet told my date that the gluten they ate will make me sick if our lips connect.

And I’m going back into the world of constant rejection. Because apparently it’s not enough that my body rejects me, now I’m courting it from others. Somewhere in the last 10 years, between my late 20s and my late 30s, I stopped turning heads. So I need to accept that passive rejection as well.

So please wish me luck, friends. Particularly when it comes to finding the energy and pain-free days to go on dates. And please offer me any tips you have. Especially on flirting. I need lots of help with flirting.

 


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.


Desperately wanting to get off benefits

February 26, 2017

As I started to write this, it felt incredibly familiar. So I did a quick search and what do you know, I wrote this almost identical post a year ago! So much has changed, and yet so much has stayed the same….

My health has continued to improve. No one is more surprised than me! It’s not like I’m well enough to work a full time job, or even a part time job from home that requires set hours. But I’m doing some part time work from home for myself (doing some consulting) that isn’t paying much yet, but there’s some hope. Still, it’s hard to aim for a very specific amount of money, knowing that I can’t earn “too much” because I’d lose my benefits.

Lately I’ve been more desperate than usual to get off of benefits. I hate the feeling of enforced poverty, and I’m not even poor! The income is way too low, but I have a ton of savings from back when I worked, and by cutting out all of my unnecessary expenses and getting a bit of help from my parents, I’m making it work.

The thing is, I don’t want help from my parents. They’re lovely and I adore them and they never do anything to make me feel bad about needing their help. But I was financially independent the day I graduated college (they paid for it, bless them.) I had a job, an apartment, and savings from all of my previous years of work. They might occasionally give a generous check as a birthday gift, but that was. Now, they pay for my cell phone, pick up groceries for me, and do other little things, in addition to helping out in larger ways. I love them for it. But I hate it.

On top of that, I miss luxuries! I don’t need anything too fancy, but I’d love to go out to dinner without having to worry about it. I want to buy a sweater or two to replace the 5 that are threadbare. I hate that everything I spend beyond my rent is coming out of my savings, with the knowledge that I’ll never be able to replace it. Once I was out of work for a while, and I spent money from my savings. Fine. Because I knew that once I got a job, I’d put money back into my savings accounts, and I did. But this is different. If I stay on this path, I will never again be able to save any money at all. And that sucks so much.

My new consulting business is financial coaching. It’s something I started doing ages ago, back when I had a full time job, but now I’m trying to do more of it. It sucks to advise people on how to build up their savings when I can’t do that for myself. I read books and blogs about effective ways to save, thinking about which principles I’d like to apply myself, and then I remember that I can’t, and I never will.

I feel trapped. And lately I’ve been trying to escape from the cage. But there’s no way out.

I do the math over and over. After all, that’s my thing: calculating money. I figure out how much I would need to earn in order to support myself without Social Security, fuel assistance, food stamps, MassHealth (Medicaid), Medicare, or my new affordable housing situation. I multiply for taxes. I do the math and it feels impossible. But what if….?

And then just as I begin to think it might be worth trying, I remember that even if I can manage to work for myself from home for a while, chances are good that my health will take a dive at some point and I’ll be unable to work again. I could try applying for benefits, but it took over 2 years the first time, and I there’s a good chance the next time I wouldn’t get them at all.

If I’m going to get off benefits now, I have to earn enough that I can save huge amounts every year to defend myself against needing benefits again in the future. I have a lot of savings now, but not enough to last the rest of my life, which could be another 50 or even 60 years. I would be too nervous to go off benefits until I was saving large amounts of money. That would be in addition to the money I’d need to earn to pay my regular bills.

This isn’t impossible. My odds are better than 0. It’s just that right now, at this moment, it doesn’t feel that way at all.

Still, I’m aching to get out of this cage.


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.


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?


Pups, trees, and better health

December 27, 2016

img_20161223_091955I grew up in a suburb, then went to college in a quiet rural area. But my university had around 17,000 undergraduate students, plus graduate students, faculty, and staff. It was a city unto itself. After college I moved to a city, then a different city for graduate school, then several more moves within cities. Which is why it feels so odd to be living in the suburbs again.

Five short days ago I moved to a suburb that’s a lot quieter and smaller than the one I grew up in. This will be a huge adjustment, but overall I think it will be good. Since this blog is about living with a chronic illness, here are a few ways I think it will be good for my health:

  • This complex allows dogs and there are dogs everywhere. I’ve pet many in just these few short days, including my neighbor’s new puppy! Petting dogs always makes me feel better, no matter what. And soon I’ll have one of my own!
  • Check out the view from my desk at the top of this post. It’s not as great as my old view, but from my window I can see so many trees! From my apartment I can take a walk along a path through woods, something I used to have to drive to do. This will do wonders for my emotional health.
  • It’s so quiet here. I’ve been sleeping better than I thought was possible. When I’m awake, it’s peaceful and relaxing. It’s strange, and a huge adjustment, but I find it calming and lovely.
  • No. More. Stairs. I’m on the first floor and there are no stairs to get into the building. This is amazing!
  • Easy parking. I used to feel stressed out about finding a parking space. Then I would have to carry things from my car, sometimes several blocks, just to get to my building (before dealing with the stairs.) Now the tiny parking lot is by my front door, and I never have to park very far. Bringing in groceries today was so easy.
  • Laundry is now in my unit. The last time I had that was when I lived with my parents. My guess is that laundry won’t be fatiguing anymore.
  • No traffic. I have to do a lot more driving (I can no longer walk to things or take public transportation,) but it’s much less stressful.
  • Less pollution. ‘nuf said.
  • It’s a smaller apartment. There are downsides to that, and I’m not thrilled, but I also know that on the days I’m in too much pain to walk, having a smaller apartment will be super helpful.

In time, I’m sure I will find more ways this move will be beneficial to my health. In the meantime, I’m excited to enjoy these new benefits. Now excuse me while I go unpack some more boxes….


I’m moving!

December 21, 2016

I can’t believe that in 24 hours I will be living in a new apartment. I have been in my current place for over 10 years – much longer than I’ve been writing the hundreds of posts on this blog. Wow!

A lot has happened in the last 10 years and maybe I’ll look back over them another time. But at this moment, I’m looking forward.

I’m looking forward to my gorgeous new kitchen with the island in the middle, granite counters, beautiful appliances, and open feel. I’m looking forward to the comfortable living room, the lovely patio (my first ever outdoor space!), and my 2 bedroom closets. I’m looking forward to the apartment complex’s gym and book club. I’m looking forward to off street parking. I’m looking forward to meeting my new neighbors and their dogs. I’m looking forward to getting a dog of my own! I’m looking forward to living in a place with no stairs! I’m looking forward to peace and quiet and a view of trees.

Yes, there are things I’ll miss about my old place. The many windows, lovely open views, and easy walking to lots of great things will be missed. I’ll miss being able to take the T (our subway) whenever I want to (and feel up to it.) I’ll miss having a lot of activity around. I’ll miss having friends without cars visit me (the new place requires a car.)

There are things I’ll miss but so many more that I’m looking forward to, and I’m focused on those.

I’m also excited and proud of myself that I managed to prepare without getting *too* stressed out or fatigued or pained. Thanks to some new supplements I’m feeling pretty good, I’ve been careful to pace myself, and my wonderful mother has been incredibly helpful. Not only did she come over twice to pack boxes in the last month, but now she’s staying over at my place for the two nights before the move to help me with final preparations. She’s an angel, and I’m super lucky to have her in my life.

And with that, I’m signing off for a few days. Hopefully I’ll have internet access at the new place right away (but the cable company has been difficult about that, so we’ll see.) I’ll be busy alternating between unpacking boxes and getting lots of rest.

See you on the other side!


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