Vagina vagina vagina

January 9, 2015

I ate an incredible chocolate chip cookie today. It gave me a lot of pleasure. It was just delightful.

I’ll get back to the cookie in a bit.

Like many people, I have two hands, two eyes, a mouth, a liver, two lungs, a heart, two legs, and many other body parts including, yes, a vagina. So if I can talk to a doctor, a friend, an acquaintance, or a stranger about pain in one of those other body parts, why is it considered taboo to discuss pain in my vagina or any other body part involved in procreation?

I don’t personally have vaginal pain (aside from the occasional yeast infection, etc.) but if we discussed these things more openly, it wouldn’t have taken me years to find out that the blood clots I got with my period weren’t normal. And while I don’t happen to have pain in my vagina, vulva, or related areas, plenty of others do.

The taboo seems to trace back to pleasure. Apparently, the problem with discussing vaginas and penises has to do with the pleasure we get from them. I got a lot of pleasure from that cookie this afternoon, yet it isn’t socially inappropriate for me to talk about my mouth. There’s just no logic to it. Apparently sexual pleasure is to be shamed while all other pleasure is acceptable, at least in my culture. But who does that help? I see absolutely no reason why that should be the case.

Many people of all genders express discomfort when discussing genitalia. I don’t get it. Every single one of us is here as the result of sexual organs. Think about it: would you exist if no one on the planet had a uterus? The vast majority of us are here because of a penis and a vagina, even if they never came into contact with one another. It amazes me how many men think vaginas are only for sex; unless they were born through C-section, they once came out of one!

Today I learned that a friend has vaginal pain. She had never mentioned it before, referring only to more socially accepted forms of chronic pain. She said she’d probably never discuss it again. But why should that be? And the topic of how pain in other parts of the body affects sex really needs to be a post all its own. If you have chronic pain, has your doctor ever asked if it’s had an impact on your sex life? Mine haven’t. But they should have. Every single one of them (in the appropriate specialties) should have!

So I’m saying it loud and proud: I love my vagina! It is as important a part of my body as any other (and more than some…. I’d give up an appendix or tonsils before I’d give up my vagina!) If you have pain or other symptoms in any body part that’s taboo to discuss, feel free to share it here. I will give it the respect it deserves, and I suspect most of my regular readers will, too. After all, it is as much a part of your body as your shoulder, your skin, and your kidney. So why not discuss it?

Which is why I titled this post the way I did. Let’s start with at least being able to say the word itself!

11 Comments | Educating, Frustration, Healthcare, Insensitive, Isolation, Pain, Rants, Relationships: Family & Friends & Dating & Sex, Symptoms | Tagged: , , | Permalink
Posted by chronicrants

It’s ok to ask for help

November 30, 2014

I’m so used to asking for help because of my health. Sometimes it’s something simple, like today when I couldn’t turn a screw that was stuck. I thought maybe it was because of my joint problems. But as it turns out, my very healthy and very strong friend couldn’t turn the screw either, so it wasn’t just me. That felt a bit odd.

But what felt even stranger was asking for my friend’s help with something that was absolutely in now way related to my health problems. Usually the help I ask for is obviously health-related, like bringing me food when I don’t feel up to leaving the house or carrying something that isn’t heavy or large but that I still can’t manage. That kind of thing. And sometimes it’s on the edge, like turning a screw that may or may not really be stuck.

Then there are the things that are completely unrelated to my health in any way whatsoever. And that’s what happened today. I needed to reach something that I just couldn’t reach. Even on a step ladder while wearing heels, it just wasn’t going to happen. Because the thing is, I’m short. I’m very short. Well ok, I’m not that short, but I’m definitely well below average height-wise. My friend is 5’9″ and was able to reach this thing from my step ladder. No one of average height, no matter how healthy, would have been able to reach that thing, so of course I couldn’t come close.

Here’s the weird part, though: I kept trying to excuse asking for help. I kept joking about it, and insisting that I really did need the help in a way that wasn’t health related. And then I wondered why I was trying to justify the request. The friend who was helping me is one of my oldest, dearest friends. She’s one of the only non-family members in my life who knew me before I had any health problems. She has brought me groceries, fetched prescriptions, shoveled out my car after snowstorms, and carried numerous heavy objects. And I have helped her with personal things as well. If I feel the need to justify my request to her, of all people, then it’s obviously completely about me. She certainly didn’t say or do anything to suggest that I was asking for something unreasonable. She has never judged or questioned any of my requests. She often offers unsolicited help. So why was I so defensive?

I hate asking for help. I hated having my mother cut my meat for me when I was 16 and could only use one hand for a while, and I hate asking for help now. I have been judged by too many people, from strangers to doctors to the Social Security Administration, and sometimes I assume I’m being judged even when I’m most likely not. I can’t stand being seen as weak. I was a crier when I was much younger, and around the time I grew out of that, the pain began. There have always been so many things I couldn’t do, and now there are even more. I forget that asking for help is its own form of strength, and so I resist it. Yet I need help so much, and avoiding it just isn’t possible.

So when I really need to ask for help, I expect to be judged as weak, even when that’s not happening, and apparently I get defensive to minimize the weakness that’s perceived. It may not be right or necessary or even make much sense, but it’s where I’m at after more than 2 decades of pain and other symptoms, and more than 2 decades of judgement from others.

Why am I telling you this? Because I’m guessing that many of you also have trouble asking for help. Your reasons might be similar to mine or completely different, but you have your reasons. Sometimes they’re justified and sometimes they’re not. No matter what, I want you to know that you’re not alone.

5 Comments | Expectations, Kindness, Relationships: Family & Friends & Dating & Sex, Support | Tagged: , , | Permalink
Posted by chronicrants

Re-learning what it means to have free time

October 25, 2014

The thing about not working due to illness is that “free time” is hard to measure. Back when I worked, “free time” meant non-work hours that weren’t dedicated to chores, like cooking or cleaning. It was simple then: either I was working (paid or otherwise) or I wasn’t.

But now I’m always working, in a way. Taking care of my health is more than a full time job. And on top of that, many hours that are “free” are spent feeling too lousy to do anything. I might spend an entire day at home, but I’m in too much pain to sort through these papers or answer those emails or call a friend. I left my job 3 years ago and I’m finally used to not going to a job, but for the first time, I seem to have so-called “free time” and it’s a bit of a shock.

After I left my job I was busy dealing with huge amounts of health research. I read, read more, and reread it all. I joined Facebook groups and Twitter chats. I took books out the library. I found new doctors. On top of that, I was dealing with long term disability, social security, and losing, regaining, relosing, changing, and once more losing my health insurance. There were doctors, lawyers, and more doctors. I changed my diet and tried new medications. It was exhausting. And of course, through it all, I felt like crap.

Finally, the long term disability insurance battle was over, I received social security disability, I got Medicare and Medicaid for health insurance, and I applied for a disabled subway pass, food stamps, section 8 housing, and fuel assistance. Last month, I had finally finished with the paperwork! At the same time, I was temporarily done with my medical research. There was one more avenue to pursue, but first I needed to deal with a few old issues. I had the right practitioners and I was pursing treatments, but only time would tell. Just as I reached this new plateau, I started dating someone and we spent a lot of time together. Then, my grandfather died.

And so now, at the end of October 2014, 3 years after I left my job, for the first time I’m finding myself with free time. The family issues have passed and things are settling at a new normal. The relationship is over, unfortunately. The health research is still on hold. The paperwork is still complete. At the same time, surprisingly (or maybe not?), I’m feeling a bit better these days. And suddenly, I’m able to do more!

The stress has been lifted. The anxiety is gone. I’m making plans for 5 or even 6 days each week! Some days the plans are small: a friend coming over to chat, a doctor appointment. Other days they’re big: going to a party, doing volunteer work for an entire afternoon. Still other days, I stay home and rest. I don’t do too many big things in a week, but the point is, I’m doing them!

Of course, that’s also why my “free” time doesn’t feel so free. I look around my apartment and see a lot of clutter. I have big projects that I’m not working on. I have errands that aren’t being run. I’m so glad to have the time and ability to go out, that I go out whenever I can. And that means that when I’m at home, I’m lucky if I have the energy to write a blog post. (On a side note, I hope to get back into a good writing groove now!) The projects aren’t happening.

It will take some time to find my balance. Things like my social security application were so important, putting them off wasn’t an option. Now I need to find a way to prioritize the things that aren’t so clearly ranked. I know I’ll figure it out. It will just take some time. And in the meantime, I’m so grateful to be having this problem at last!

4 Comments | Educating, Expectations, Frustration, Limitations, Milestones, Raves, Relationships: Family & Friends & Dating & Sex, Symptoms | Tagged: | Permalink
Posted by chronicrants

The freedom of a wheelchair

October 21, 2014

Last weekend I went out of town for a family wedding. As regular followers know, traveling has been tough for me recently. I used to travel *a lot*! I visited family out of state at least 4 long weekends per year (2 of those involved flying.) I spent many

Connecticut trees from a train window

Connecticut trees from a train window

weekends and long weekends and sometimes a week in Maine each year. Then I would take a bigger trip each year, either overseas or to the west coast. If I was in town for 2 months, I’d get antsy. But that was before.

In the last year I have left town only once: to go to a family wedding in NY in July. And I was incredibly sick. My gastrointestinal symptoms were severe and the fatigue was terrible. So you can imagine my surprise when this weekend worked out ok, especially since it almost didn’t happen!

Last week I was in horrible pain. My toes were swollen and painful. I can’t use a cane or crutches because of the instability and pain in my wrists. Prescription painkillers barely help and the side effects are terrible. Cannabis takes the edge off, but that’s it. And I can’t use it on a train. Walking was difficult and painful on Monday, it was horrible on Tuesday, and it was nearly impossible on Wednesday. That’s when I started to question if I’d be able to go on this trip. I cried as I thought about missing the wedding of someone I care so much about. But how could I go?

I talked through every possible stage of the trip with my mother, a friend, and myself. All three of us came to the same conclusions. I needed the pain to improve. The train left Friday morning, the wedding was Saturday night. The dew point was set to drop on Friday, which meant I should feel better on Saturday or Sunday, but would that be enough? How would I navigate the train station? How would I even get there?

Thursday came and went, with pain similar to Wednesday’s pain. Thursday night my boyfriend broke up with me. It was not a good day. A neighbor took out my trash for me, since I couldn’t even make it to the basement where the trash bins are kept. I hobbled around my apartment packing. I rested. I hobbled and packed some more. I cried on the phone to my friends about possibly missing the wedding and about the breakup. I ordered a cab just in case I went, since I knew I couldn’t take the subway to the train station in my condition. I was ready for the trip, but would I be going? I oscillated for hours.

Friday morning at 6:30am my alarm went off. I never feel good when I wake up that early, but I ignored those symptoms and focused on the pain. It was still there, but it was better. Was it good enough? I showered. Could I make it? I dressed. It hurt, but not as much. Would it stop me? I packed my CPAP machine and other last-minute items. How bad would it be if the pain got worse again while I was out of town? Halfway through breakfast I finally decided to go.

I hobbled to the street and took a cab to the train station. There, I got a wheelchair and breathed a huge sigh of relief. The red cap took me right to the train and put my suitcase in the overhead rack. When I arrived at my destination, a red cap was waiting with a wheelchair. I was in pain when I arrived, but it wasn’t too bad.

The next day, the pain was worse again. While my family went out and explored a new city none of us had ever visited, I sat in the hotel room. At first, it was relaxing to read a book and rest. But I quickly got stir-crazy. The room didn’t get great light, and I wanted to get out of there. I called the front desk and asked if they had a wheelchair for guests to use, and they did! I called my mother on her cell, and she and my dad came back for me.

A little while later, we were strolling through a farmers market, sitting in a beautiful park, and then enjoying a nice lunch. It wasn’t fancy. It wasn’t the way I would have explored a new city if I was able to walk. It’s not what I would have done 3 years ago. But it felt so good to get out of that hotel room! I was so happy! The wheelchair gave me a kind of freedom I wouldn’t normally have had, even while I lacked the freedom to choose where I went, since I needed my parents to push me.

Thankfully, miraculously, my prediction was pretty accurate. By Saturday night I was up and about at the wedding. I kept most of my standing weight on my other foot and I sat more than I otherwise would have, but I also danced a bit (well, I planted my feet and wiggled my hips, because there’s only so much you can do when you’re in pain.) I walked around and socialized. I enjoyed myself, to my own shock and pleasure.

The next morning I was in pain again, but it wasn’t as bad as in previous days. Again, we borrowed the hotel wheelchair and my parents pushed me a few blocks away to where the entire family was meeting for brunch. We had a wonderful time!

The return trip went well. Again, red caps took me to and from the train in wheelchairs. I took a cab back to my apartment. It was Sunday, and the pain wasn’t too bad, but it was enough that I wasn’t about to wrestle with luggage on the subway. Yesterday, Monday, I woke up with almost no pain. I went out and ran errands. Today I’m fine. The timing sucked, but thankfully it all worked out ok.

But it couldn’t have worked without wheelchairs. I wouldn’t have been able to manage the train stations. And even if I’d made it down there, I would have been miserable and depressed at the wedding after a day of being trapped in a hotel room. I don’t want to need a wheelchair, but I’m so glad to sometimes have the option of using one when I need it!

Do you ever use wheelchairs as an occasional or part-time aide? How do you feel about it?

3 Comments | Expectations, Frustration, Isolation, Limitations, Pain, Raves, Relationships: Family & Friends & Dating & Sex, Symptoms, Unpredictable | Tagged: , , | Permalink
Posted by chronicrants

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