chronic

European Vacation

Posted on by akiwifreund

I’ve been able to make three trips to Europe thanks to the generosity of my friends who live in the U.K. – I met C. when he was a foreign exchange student at the university we attended in 1992-1993. C. has always been really good about keeping in touch with me, so our friendship has weathered 23 years with an ocean separating us. He and his family have graciously played host and tour guide every time.

The first time I was there, C. was still a bachelor, and he and his father shared the house in which C. grew up. Unfortunately C. was not able to request time off from work, so his father A. was my tour guide. A. was a charming Welshman who liked one particular pub, so every day, we went to The Cricketers Pub.

It was mostly older, retired folks gathering midday for their whiskey and beer, but I became acquainted with two men who were a bit closer to me in age. One was Michael; I remember he wore a blue and tan sweater and blushed like a choir boy, and I’m thinking he was in his mid-30s. The other was Barry, who was around age 45, and had an unfortunate run-in with burgundy hair dye that he had hoped would make him look younger, but instead gave him an unnatural purple halo. The other regulars at the pub teased him mercilessly.

While the older patrons and I chatted, I tried to draw Michael into the conversation, but with my brash American loudness, I think I might have been too much of a bulldozer for him. However, I discovered that I unknowingly caught Barry’s eye.

The next day we entered The Cricketers, the barkeep held up an envelope and sang out gleefully, “I have a note for you!” That set all of the elder patrons into squawks and chirps – it seems it was the topic of the pub, something to break up the mundane. It was a love note from Barry. He was requesting the pleasure of my company if I had time during my holiday to join him for dinner.

I left A. at his table and went to a shop to purchase blank notes to reply back. When I returned I sat with A.’s cronies and I wrote back to him that I was flattered, but I had a boyfriend and wasn’t available to date, and wished him well. I think the elders were hoping for a little more juiciness. I left the note with the barkeep.

The next day we returned to the pub, and the barkeep waved me over for another note. Barry said he understood that I was not available, but wondered if we could at least be pen pals. I left another note with my address. I did receive a few letters after I returned back to the states, but did not keep up correspondence on my end, so that was the end of that.

By the time I took my second trip, I had relocated to Arizona and had been working at a large international bank for three years. I worked in the tech area, which in 2006 was still greatly dominated by men. I managed to become acquainted with a woman in my area, S. (Her brother is the one that set me up with his work buddy who was still married and tried to assault me on our date.) We became closer when I changed from wearing blonde wigs to dark red ones; she walked past my cubicle and said, “Oh, that one girl is gone, and they hired another one with the same name.” Nope, I was the same person, just a different wig – but that’s hilarious and something she will never live down.

By the time I made it over for this visit, C. had gotten married to his wife E. and they had a little girl together, K.. C. encouraged us to go to the town center and see some live music or whatever entertainment we could find – the next day was a bank holiday, so he expected everyone to be out, even though it was a Sunday evening. He dropped S. and I off and told us to call when we were ready to come home.

We walked up and down the center, but it was very quiet, and most places were closed. We happened upon an old church that had been re-purposed as a bar; we asked the doorman if it was worth paying a cover to enter. He looked us up and down, told us we were too posh for the bug eating contest that was happening, and suggested we try to find a particular jazz bar.

We walked up and down that street and couldn’t find the jazz bar for about an hour until we realized it was closed for the evening. S. and I ended up at a pub, bought one rum & coke (no ice, of course, because Brits do not put ice in their beverages) and then called C. to pick us up. When C. got there he had a loaf of stale bread with him; he said he wanted to feed the ducks and geese while we were down there. C. pulled into a spot by the river and we grabbed the bread and ran down to the edge. By that time we were thoroughly cold and jetlagged, so instead of tearing off nice little hunks to feed the birds at 11 pm local time, we heaved the whole loaf into the river with a loud ker-plunk that sounded like an alligator made a landing. We were ready for that day and night to be over.

During the 2006 trip we also all hopped on a plane to visit C.’s friend J. in the Czech Republic. We planned it so C., his wife E., their daughter K., C.’s dad A., S. and I could spend some time in Prague in addition to being hosted by J. and her little family at their house.

By that time, A. was elderly and had to be pushed around in a wheelchair – no more pub hopping with him. My friends suggested that S. and I run around Prague on our own since it was our first time in that city, and we could meet up later in the restaurant below our hotel.

S. and I signed up for a tour of the palace grounds and cathedral, as we figured it would be a good introduction to some remarkable history. We bought our tickets and sat in a little bus that would take us to our starting point. After we sat, a man with four henchmen entered and sat directly behind me. They all stared openly at me; the main guy leaned forward and asked me where I was from, visibly trying to turn on the charm. I told him I was from the U.S. He smiled and told me he was from Jordan. Then the men rearranged themselves in the bus seats so we were surrounded on all sides. S. and I gave each other side eyes.

When we arrived at the palace gate to start the tour, S. and I lost all of our cool points because we started swooning over the guards. At one point she and I ran over to one who was standing still as a statue and we both attempted selfies without being too invasive. S.’s picture of the guard was of one eyeball and eyebrow, and my picture was of his very perfect lips and cleft chin. We didn’t feel bad about missing our own faces because he was so handsome. Our tour was timed perfectly because we actually got to see the changing of the guard as well.

Our tour guide was a very short German woman who gave the tour in German and English. At that point I remembered enough German to understand what she was saying.

The Jordanian man and his bodyguards became more bold with me. I’m not sure if he was fascinated because I looked to have green eyes and red hair, but he was convinced I was going to be his next wife. The bodyguards started snapping photos of him standing near me. Imagine if you can a very serious Jordanian man photobombing me to make it look like we were together.

S. and I were creeped out. We tried to stay close to the tiny tour guide, but as stern as she was, we knew she wouldn’t be able to physically help us if the bodyguards decided to snatch me. Susan and I linked elbows and kept moving out of the way of the men. Eventually they tired of the cat and mouse game and started mocking us and imitating us with our arms clasped together.

At the end of the tour, the Jordanian man confronted the tour guide and demanded a refund because he wasn’t allowed to enter a particular room in the cathedral. It ended with him being completely nasty to the guide but finally giving up his demand. After that he turned to me and put on his charm and asked if I enjoyed the tour as if he hadn’t at all been unpleasant seconds before. I simply said “yes” and S. and I linked arms again and took off. No one came after us, so we figured he gave up.

At the end of the day we all met up at the restaurant for some goulash. S. and I were sitting next to the window, and who did we spot? The Jordanian guy with the body guards – they were walking down the sidewalk towards the city center. S. and I immediately dove under the table. Our friends were completely flabbergasted and convinced we had lost our marbles. After peeking a number of times, we climbed back up and told our tale. Luckily, we didn’t see that guy any time after that.

S. and I tried to go clubbing in Prague. We left the rest of our friends at the hotel and went to a place that J.’s daughter recommended. We had to take an elevator to the top floor of a building to get to the club. When we arrived, no one was there, and it was approximately 10:30 at night. The doormen gave us wristbands and said we could leave and come back later when it was much busier. We did, but it hadn’t improved when we returned. S. and I decided we just wanted to dance, so we did. Out of the shadows men converged on the outer edge of the dance floor, basically forming a circle around S. and I as we were dancing. After about four songs we got creeped out and decided to give up and go back to the hotel.

After we returned to England, E. and her daughter K. brought us to London for another mini trip. We were one stop away from the infamous Leicester Square. E. encouraged us to go out to the clubs while she and K. stayed back at the hotel. We went to the square and received many solicitations for the various nightclubs, and we finally settled on one. It was the same as in Prague! Hardly no one was there, and when we decided to say screw it and take over the floor, men came out of the shadows and stood around us in a circle while we danced. That was the final straw. S. and I headed back to the hotel.

When we returned to the town where C., E., K. and A. lived, C. offered to drop us off again in the center for one last night out. We turned it down. S. and I agreed that we were not meant to have wild nights out on that trip, no matter how hard we tried.

I returned to England in July of 2012, three weeks before the Olympics. By that time, C. and E. added a son to the family, J. Little J. was young enough that that trip had to be planned around the needs of the family, so there was no chance of me venturing out for some clubbing. At that time I was more fit than I had been in decades. It’s too bad I couldn’t go out and become acquainted with some British future husband(s). It may have been my last European holiday.

Vacations overseas never turn out like they do in the movies, that’s for sure.

To Date or Not To Date, That Is the Question

Posted on by akiwifreund

I hear this sentiment often from fellow “spoonies”: They have given up on dating. They enjoy my stories (thanks, I try!), but they are not putting themselves out there in the dating pool. And why should they? It’s tough. You’re naked and vulnerable and your waves of pain crash into your body so that you can barely stay afloat. You get tired sometimes – exhausted, really – of paddling just to keep your head above water.

But to borrow from Mindy Kaling’s new book Why Not Me?, all I can say is, why not me?

This song from Andrew McMahon reminds me of my teenage years. I didn’t actually go on my first date until a week before I graduated high school, when I was already 18. I was a late bloomer. But I felt free, and I couldn’t wait to live my life and choose my own adventure.

When I finally did get into dating, it was just how I imagined it would be. And by “it,” I really mean the men. The kissing, the making out, the talking about nothing and everything, felt just like I thought it would. I felt passion and I felt heartbreak. I felt excitement. Sometimes I felt like I was on fire.

It has been a very long time – possibly a decade, if I think about it – since I have had a love who freely returned love to me and wasn’t afraid to say it. Though this rare disease has eaten away all of my supposed “good years,” when I am finally relaxed and confident in my own body, I’m not ready to give up. I still think I can have the same feelings I did at 18, even if I can no longer stay out till the wee hours of the morning with groups of people I’ve just met, and then crash on a random couch or floor or bed and trade secrets with a man who is enchanted with my eyes and just wants to hold me and see a little of my soul.

So, man whom I don’t know yet, I’ll meet you at the high dive. Take the leap with me. I promise that I’m worth it.

 

It’s That Time Again

Posted on by akiwifreund

I’m not talking about Daylight Savings Time (I really think that should be done away with). I’m not talking about burning a yule log and sipping a hot toddy. I’m talking about putting on the most ridiculous paper “gown” and having my girl parts checked.

Five years ago this month I made the best decision I ever could have made and that was to push for a hysterectomy. I had had many, many problems since the age of 19, including some fast-growing fibroids that had taken over my uterus and prompted a quickie biopsy (without any anesthesia or numbing). I remember the doctor coaching me through the pain of that biopsy and at one point saying, “You’re doing good, we’re halfway done.” And like Satan’s wife, a deep, hideous voice came out of my mouth that said, “Only HALFWAY??” By the end of 2010, if I was lucky I had a whole week off every month from bleeding, rather than the reverse being true. So at age 36, I kissed my uterus goodbye – or rather, I gave it a good shove and told it to kiss my ass.

Thank goodness I don’t have to worry about birth control or how to control a flow. But I still worry about diseases, so I requested a full workup from my doctor – peeing in a cup, scraping the “pouch” that was left behind where the cervix used to be, and a couple of vials of blood took care of all of the testing. The person I saw today was new to me, so it was kind of odd that I had to convince her to check me for everything, as if she was thinking I was too old, too disabled or too nice to have had multiple partners – or all of the above. What I didn’t say was, “Yes, I’m still sexually active even though I look like Quasimodo right now. You’d be surprised what guys will overlook with the promise of getting a piece of ass.” A couple of times she paused as if she was waiting for a number. I finally said, “Look, I’ve never been married, and I’ve been single a lot, so yeah, test for everything.” I don’t like to leave anything to chance.

Then we had a conversation about the hair “down there.” She wants all ladies to go back to the ’80’s, when porn didn’t dictate the majority of women under a certain age shaving. She was singing the praises of how the hair kept pollutants out when women weren’t punishing themselves for being adults rather than little girls. I reminded her that I really didn’t grow hair ANYWHERE, and she said that she didn’t want me to get rid of anything – that I should try to keep whatever I could get. I snicker now because the next logical progression if I made that choice would be explaining crop circles in my kitty hair when I’m naked with my next partner. Alopecia makes hair fall out in perfectly round circles; when you have universalis, most or all of the circles have melded into one universal loss of hair everywhere, but I sometimes have some patches. If you have ever thought to yourself, “That dude should just give up trying to grow a beard because it ain’t happening,” that would apply to my situation too.

Today I remembered a doctor’s visit a few months ago when I was waiting in line to check out. There was a kid in his early 20’s who didn’t have much experience with going to the doctor or the intricacies of dealing with insurance. He was bounced back and forth between the front desk and the back one because he really just wanted an appointment for STD testing, but it wasn’t included in his “free” yearly exam as he had hoped; he finally left the office without getting anything done. I could tell he was worried about paying his co-pay and co-insurance. I wanted to step up and offer to pay for it, but I would have violated what little privacy he tried to keep – I didn’t want him to know I heard everything, but I also didn’t want him to walk away without getting tested. In the end I had to let him go. I sure hope he was able to take care of it sooner rather than later.

Today is World AIDS Day. The prognosis has changed greatly since the early ’80s thanks to advancements in medicine, but I’m more than happy to get tested regularly so I don’t end up being part of that demographic. I’ve got enough going on as is.

Good Thing I Had Chocolate Handy

Posted on by akiwifreund

Today was pretty rotten. I feel like I am writing the same thing over and over again too – that yet another doctor thinks I’m more trouble than I’m worth. This time it was my PCP (primary care physician, for those of you lucky enough to only need one every five years). We had traded emails at the beginning of this month about what I needed at the next appointment – today – so I came prepared with my list and a sizable stack of records in case they were needed.

We quickly covered maintenance meds and labs. After that, I asked her first if she would be able to send a quick note to the company managing my medical assistance to see if the state would consider negotiating prices directly with Johns Hopkins so I could be seen there. Immediately she got pissy and told me that she doesn’t write letters for anything, then asked me repeatedly what I hoped to accomplish with a letter. I explained again that the state would consider my case (since I’ve already been turned down by a dozen doctors at all of the big institutions as well as various offices in MN), and that the financial adviser from Johns Hopkins indicated that other people from states other than Maryland have had success under the same circumstances. She then asked me what I meant by “turned down;” when I told her that the Mayo wouldn’t even see me, she snapped at me that she knew that, but what did I hope to accomplish? Jesus H., I was really having a hard time dealing with her nastiness.

Then I brought up submitting my case to the NIH, and she said no way, get one of your specialists to do it. I said, “Get one of the specialists who refused to take me as a patient and told me not to come back?” Then she said she couldn’t do it because there was no way they were going to accept the recommendation of a PCP. I pointed out to her in the directions that they wanted the submission to come from the PCP. Then she said she didn’t know me well enough, to which I replied that she could ask me anything, and I brought records to back me up. She told me there was no way she was going to read my records. I gave her a summary I wrote, and she proceeded to mock everything I noted – quoting what I entered and then said, “What is this??? You can’t write this!” when I said things like, “The neurosurgeon opened up my abdomen and noticed it was red and swollen, probably from a reaction to the catheter.” I told her I had a lot of abdominal pain, and she said, “From what???? Do you think your catheter is coming out of your abdomen or something?!” I told her no, but the horrible pain started the very first day the original shunt was placed in 2011 and it has never gotten better, and the neurosurgeon didn’t notice until two years later that he could actually see the physical reaction with his own eyes when he didn’t have a general surgeon assisting him. Finally she said that I needed to make another appointment with her, rewrite everything, and if she liked what she saw, she would sign it. She also said I wasn’t allowed to talk about anything else at the next visit.

Yeah, I get it – doctors have a lot of pressure on them – but she had me in tears. I didn’t understand why she was so shitty about the stuff I asked her for, especially since we traded emails on it.

After I got home and had some chocolate (yes, I ate my feelings), I started the search for my next PCP. I found someone at the U of MN who supposedly likes complex medical cases, so I’m just waiting to get a call back to see if she will add me to her patient roster. As luck would have it, she used to work for the NIH; it would be nice if she stayed friendly with some of those contacts.

At this point, my team of doctors is pretty sparse. I have a GI doc who is going to do a biopsy next week of my esophagus; I have an OB/GYN for my lady parts; I have a dermatologist who is going to track any skin changes since my family has a solid background in melanoma and squamous cell carcinoma; and I have an immunologist who prescribes me Epi-pens and inhalers. The problem is that none of these doctors can actually help with what has been forcing me to stay in bed for these years.

This is just one of those days where it feels really fucking lonely to be me. The Carousel of Crap rides again.

Duck – Here Comes Another Turkey!

Posted on by akiwifreund

The Quiz Master (previously referred to in “What’s Going On With Your Face?” post) messaged me today and wished me a happy Thanksgiving. It was not his first message to me since he signed off with a “goodbye and good day” after I told him to stop contacting me. Oh, no. I knew he couldn’t be counted on to leave me alone, considering how obsessive he is. The Quiz Master also texted me on November 15th and said, “Hey, how are you?” as if I hadn’t cut him off. As if I would come to my senses and say, “Oh, you’re the best Quiz Master ever, I don’t know what I was thinking in telling you to go away.” He, of course, told me that I was pushing him away just because I am stubborn – not because I actually want him to leave me alone. “No” doesn’t actually mean “no” and all that bullshit, according to him.

I also got a cutesy cartoon from the church guy who went radio silent in “Showing Up is Half the Battle.” This was after he sent me messages saying “happy turkey eve beautiful” yesterday, and before that a message saying his aces were up while playing poker and that he wished I was by his side as he was winning.

Don’t worry, I didn’t reply to either of these jackasses. And in perfect harmony with this post, “A Little Respect” by Erasure played on my Pandora while I was typing.

On a different note, I traded emails with one of my mom’s sisters and updated her on what was happening with my situation. She said she had contacted my cousin, who is a doctor of osteopathy (DO), and he said that the doctors are turning me down not because I’m giving them too much or too little info, but because they can’t “win” with me – there is no way they can diagnose me. As it stands right now, there are approximately 7,000 diseases out there in the world that have no name or etiology, and the majority of them are similar to mine only in that the symptoms are neuorological in nature. I have been in contact with some groups that I think should be able to put me in touch with the proper researchers, and there are rare disease groups that focus on finding resources for patients. However, I’m feeling a bit like I’m drowning again. A lot of these groups talk specifically about patients that are children. I know it’s especially troubling when children are stricken with major illnesses; after all, I was sick for most of my childhood. However, now that I’ve managed to become a middle-aged adult while this particular disease popped up, does that mean that my life is worth less? I had my chance to reach adulthood so am I therefore not worthy of assistance?

Every person I talk to tells me not to give up. I am not sure I can anyway. I mean, I had to give up my house, my car and working – what else am I going to do with my time? But at some point I need doctors and researchers to fill in the blanks. I can’t imagine going another 10 years like this and waiting for technology to catch up.

Today was the first time in about 23 years that my sister, my mom and stepdad and I were actually in the same state for a holiday, so we pigged out at my sister’s place. Yesterday and today were pretty difficult for me and I think it has to do with the temperature, air pressure and humidity; we got snowfall that actually accumulated and stayed today. I had to spend most of the time in bed because of fibromyalgia pain, but also my CSF was accumulating like the snow. I was hoping I’d be able to hang out for a few hours before my brain started being crushed, but instead I began drooping noticeably as soon as my stepdad picked me up, and I had only been upright for about 45 minutes at that point.

Wherever you are in the world, I hope that you can find things to be thankful for every day. I’m working on my list.

 

You Get the Seal!

Posted on by akiwifreund

BlogSeal

I have gotten behind in my list of things I wanted to accomplish this week, but I couldn’t let this go anymore.

Thank you to the bloggers who put their hearts out there, all naked and vulnerable, for us to see. And I know that I’m not supposed to do this because it’s supposedly against the rules, but first and foremost, I nominate My Shadow Weighs a Tonne, https://chronicallychronic88.wordpress.com/ right back. I’m a loner, Dottie, a rebel. You matter and I’ll repeat that as much as you need to hear it.

Please also take the time to read these blogs:
http://ilivebreathe.com/ – As I Live & Breathe
https://hopeforheather.wordpress.com/ – Hope for Heather
https://dawner1530.wordpress.com/ – TBI Journey
https://klregister.wordpress.com/ – The Ninth Life

Each blogger has a unique voice and adds value to my days in their own way.

I started this blog because I suddenly had absolutely no where to go – or more precisely, could not go anywhere, but still felt as if I had something to say, and good grief, so many stories to get out there. For years my dating life has been the running joke of my friends (mostly based on the fact that they could never keep up with who I was with at the moment). I can only hope that others are enjoying the ride and can laugh and growl with me.

The only advice I can possibly give is to keep writing.

Blogger Recognition Award Rules:

1. Select other blogs to which you want to give the award. You can not nominate yourself or the person who has nominated you.
2. Write a post to show off your award! Give a brief story of how your blog got started and give a piece or two of advice to new bloggers. Thank whoever nominated you, and provide a link to their blog. List who you’ve nominated in the post. Make sure to attach the award! (You can do this by right clicking, saving, and uploading the image above).
3. Comment on each blog and let them know you’ve nominated them. Provide a link to the award post you created.