I have a regular blog, Odyssey of an Oddity, and that's where I write more substantial updates and stories about myself, my family, my life, and my health...mostly my health or lack thereof.
This LJ is where I go when I want to distract myself because the pain medication isn't doing the trick, or when I want to forget that I have a potentially life-threatening medical condition. This is where I go to be superficial and random.
That being said, don't expect anything really "deep" here - that's what my blog is for. Anyway, I hope you like my LJ, and thanks for stopping by and checking it out. :)
- Current Mood: sore
- Current Music:Nuttin' honey.
Congratulations on winning my auction! Also, congratulations on ruining Christmas for my family and flushing my emotions down the toilet.
Something that I attempted to explain to you, but you either did not understand or decided to completely ignore was this: When PayPal processes a payment through eBay for more than $100, PayPal puts a hold on that money until the buyer leaves feedback, or until 30 days have passed (I think).
Despite the fact that I put directions regarding this in my listing, directions which you should have followed without my having to ask you to do so, I politely asked you to leave me feedback so PayPal would lift the hold on that money, allowing me to transfer it to my bank account, which is where it belongs. Instead, you replied with a rather nasty e-mail, accusing me of trying to steal your money, among the rest of your paranoid, poisonous, snooty, holier-than-thou ranting. Your e-mail was so emotionally-charged that reading it sent me into a panic (having autism sucks). Thanks for that (the freak-out, not the autism).
I have no access to that money. I shipped your items anyway, even though what you have done is like going into a grocery store and putting a bunch of groceries on the counter, showing the cashier your money, and then asking to leave with the merchandise so you can go home with it and test it, and then come back to pay once you’ve decided that the merchandise lives up to your expectations.
How do I know that you’re not trying to steal from me?
Anyway, back to the ruining Christmas thing. That money was supposed to pay for Christmas presents for my family this year. More importantly, I am not the only person waiting on that money. I helped a friend of my mom’s sell his stuff; he was generous enough to split the winnings with me in exchange for my help. I’m pretty sure you fucked up his Christmas, too.
And yet I see you have a perfect, 100% positive feedback rating! How is this possible?
Here, I have no problem saying all this, but to you, all I could say was, “I was simply hoping to have the money by Christmas. I’m sorry to have made you so angry.”
But seriously, I appreciate your withholding money from me, contacting PayPal to prove me wrong (and taking delight in telling me so, talking to me like I’m a 5-year-old), and sending me not only one, but two vicious e-mails.
Again, congratulations on winning the auction! I sure hope you find the items “satisfactory.”
A Very Upset Seller
I’m 25 today (and every day until this time next year). I spent most of the day watching TV with a little brown cat stuck to me. I decided to go the healthy route and had a Big Mac for lunch and warm brownies with cookies ‘n’ cream ice cream for dinner. Isaiah blew out my candles for me because I have a severe phobia of fire. He won’t tell me what he wished for because, “Then it won’t come true.”
So how about wishing me a happy birthday? You know you want to. But NO singing. I hate singing.
And I’m STILL waiting for my birthday spanking…
Mom wanted to get me a cat for my birthday (tomorrow!). A few days ago, she picked up a newspaper, which she very rarely reads, and opened it to some random page. On that page was a black and white picture of a Siamese cat available for adoption from a shelter about 30 minutes away. They named her Venus and she was 2 years old. Very affectionate, but didn’t care for dogs, they said.
I said, “I’ll bet someone has already adopted her. She’s gorgeous!” We called the shelter, expecting to hear that she had indeed been adopted. Instead, we were thrilled to hear that she was still there. Someone put a hold on her a few days ago, but called and took it off earlier that morning.
We jumped at the opportunity and arrived at the shelter a few minutes before it opened. We were taken back to see her. She was sitting calmly in her cage, surrounded by cages with cats who were meowing, rubbing their bodies against the bars of their cages, and reaching their arms as far out of their cages as they could, trying to grab me. We were allowed to open the door to Venus’ cage. I stuck my hand in to pet her. She rolled around affectionately for a bit before rolling onto her back to show me her belly. She licked my hand and then laid down with her head in my hand.
I stayed with her while mom filled out the paperwork, secretly afraid that someone else would adopt her before I could. Several couples passed by her cage, “Look at the Siamese! Now that’s a beautiful cat!”, but they quickly shifted their attention to the cats who were enthusiastically thrusting their arms out, crying for attention.
She was so well-behaved in the car; it was as if we didn’t even have a cat in a carrier in the back seat of our car. She protested for a few minutes after first getting her into the carrier, but she calmed down and sat with her paws tucked under for the rest of the ride home.
As soon as we got home, we let her out to explore her new home, which she did with almost fearless curiosity. I had to lay down and take meds almost immediately, because apparently being upright for two hours is Unacceptable. Just as I was thinking that I should lay down in the living room instead so we could get a chance to bond more, she ran into my bedroom, jumped up onto my bed, and curled up on my chest, purring and laying her head on my cheek. We fell asleep and stayed that way for a few hours.
She is so affectionate. She loves to curl up under the covers. She gives kisses. She wags her tail like a dog. Looking at her is like looking back in time at Sienna; being reminded of how Si-Si looked about 7 years ago. She’s pretty vocal, but in quantity rather than volume. She has attached herself to me, literally. She does not like to be separated from me - she cried when I left the bedroom to get a drink. She’s asleep on top of the monitor right now.
I hope everyone had a wonderful Day Before Ioma’s Birthday, EH-HEM, I mean Valentine’s Day.
Ehlers-Danlos syndrome will be featured on Mystery Diagnosis this coming Monday, December 8th, at 10:00 p.m. on Discovery Health Channel. The episode is called The Baby Who Wouldn’t Stop Crying, and I’ve heard that EDS will be featured during the second half hour of this hour-long show. It will replay several times during the week and you can check the schedule for more times.
I wanted to apply to be on this show, but it looks like I’ve lost my chance. I don’t think they’d feature EDS again - although this will technically be the second time EDS has been mentioned on this show (the first time being an episode about a girl with Chiari malformation and EDS), and I have a different type of EDS than the person being featured (but that’s just splitting hairs). I’m just glad that someone is spreading awareness of EDS.
I wish my doctor could see the show, but I have no way of telling her about it until I see her on the 19th. She and I haven’t been seeing eye to eye for a while now (and I don’t particularly like her nurse, who is
sometimes always cranky), and I have had a lot of stress and worry around the situation with no real way to fix it. But that’s another story for another day.
I also have appointments with The Useless Rheumatologist and a(nother) cardiologist this week.
I have to go back to the rheumatologist because my doctor can’t make up her fucking mind about whether or not I should take pain medication for, you know, MY PAIN. As she says, “If the rheumatologist says it’s ok, then I’ll be ok with it.” Now I have to go back to a doctor (rheumatologist) who I felt didn’t really understand EDS and definitely doesn’t really understand my pain JUST to ask if it’s ok to continue on medication and hope he says yes. And when he does say yes, I’m holding my doctor to it.
I’m going to the cardiologist because my heart rate and rhythm has been out of control for several months and we can’t quite figure out why. My blood pressure has been way, WAY out of whack - it’s either extremely high or extremely low. We’ve been trying medication after medication to try to fix both problems, but nothing has helped. And let’s not forget the echocardiogram to take a look at my wonky ticker and its fabulously enlarged aorta (Dear Aorta: Bigger is NOT better. Love, Ioma) and pray like hell I don’t hear The S-Word (surgery).
My symptoms are drastically worse when I’m vertical - the longer I’m sitting up, the crappier I feel. I can only sit up for about 30 minutes before I’m forced to lay down because of dizziness and blacking out, or pass out and scare the neighbors with the mysterious THUD (and wake up with a dislocated…something, no doubt). This is part of why I haven’t been blogging or commenting much (I am still reading people’s blogs, though!). I haven’t really felt like blogging because I don’t always have something nice to say, and I know that nobody wants (or cares) to listen to me whine about my health and how they can’t fix it and my doctor doesn’t get it (or care).
So, watch Mystery Diagnosis on Monday night, and if anyone needs me, I’ll be in The Angry Dome.
Since Friday’s Feast has been gone for so long, I’m serving up something new thanks to the lovely Jodi. Drumroll please, and get ready (readyreadyreadyreadyready - sorry, I’m a total music addict!) for Food 4 Thought Friday!
What is one thing you look forward to each day? Each week?
I look forward to talking to my mom each day. I look forward to checking my “dailies” – websites, blogs, and forums I enjoy. I also look forward to watching The Simpsons (every day at 6 p.m.). Now that the new season of House has begun, I look forward to that each week (Tuesdays at 8 p.m.).
Are you a hoarder or a chucker?
I’m a hoarder for the most part (because I’m a sentimental softie), but I go through phases where I chuck things.
Do your dinner meals consist mostly of home cooked meals, convenience foods (i.e. boxed, frozen, heat & serve, etc.), or fast food? Who does most of the cooking in your home?
I don’t really eat “dinner” per se. I eat when my wonky tummy will let me! Most of my meals consist of convenience food because I’m a horrible cook, and also because it allows me to make smaller portions (I get sick in the middle of eating and have to stop sometimes, UGH). I’m downright dysfunctional in the kitchen. If I’m in the kitchen, you can expect things to get explosive. I do 99.9% of the pyrotechnics “cooking” in my home, except for the times my mom cooks (home-cooked meals) when she and Isaiah visit me.
Has the rising cost of gasoline caused you to restrict, limit, or alter anything in your life? If so what?
Actually…no. My mom doesn’t have a car right now, and I can’t drive.
Recipe for this Week (instead of your recipe for life - what is it for just this week?)
Don’t do what you do or say what you say because you’re afraid of how you’ll be judged by others. People will like you if you like yourself first. Do and say what’s in your heart – be true to yourself.
There are far greater tragedies, like the daily assault on my poor lungs and sinuses. To that end, a brief letter:
Dearest Idiot Neighbors (all of you),
Do not smoke outside on your balcony while it is raining. The increase in moisture makes the smell infinitely worse and carries the smoke directly into my breathing passages.
Better yet, do not smoke. At all. Ever. Thank you!
Smoking can kill you, which would be bad enough by itself, but if you continue to smoke, *I* shall be forced to kill you.
Your loving, caring neighbor,
Alternate Title: One of the Pharmacists at My Pharmacy is a Fucking Moron
Before I go into the drama that occurred a few Saturdays ago, I’ll say that up until recently, I’ve really liked my pharmacy. There are two pharmacists that I can recognize by sight – The Blonde One and The Brunette. I do know their names, but for the sake of privacy, Blonde and Brunette it shall be. Blonde has physically gone out of her way to help me in the past, bringing my medication to my home when she got off of work once. Blonde is a total sweetheart. Brunette, on the other hand… Well, she was always polite, but that’s about it.
This time, Brunette has gone beyond rude. She accused me of doing something extremely illegal, and not to my own face, but to my mom’s.
When I pick up my prescription at the doctor’s office, I don’t scrutinize it. I look at it quickly and make sure that 1) it’s mine, 2) it’s for the right medication, 3) it has the right date on it, and 4) that the doctor remembered to sign it. This prescription looked fine to me. I did notice that the 5 in the number 15 (for the date) looked a tiny bit darker than the other numbers, but I didn’t think much of it and I assumed that nobody else would, either. I dropped it off at the pharmacy without a second thought.
When mom went to pick up the filled prescription the next day, she immediately noticed that the “N” slot (my last name starts with N) was empty. “Oh, shit. Did they not fill it yet?” she thought. One of the pharmacists saw her and she asked if they had filled it yet. The pharmacists whispered back and forth, right in front of her, for a few moments before Brunette came to the counter with my medications, wearing a nasty look on her face.
“Was there a problem?” my mom asked. Brunette, still holding my medications hostage, slid the prescription slip across the counter and pointed to the date, “That number 5 is darker than the other numbers. We were suspicious that your daughter, or someone, tampered with or altered the prescription.”
Cue my mom getting REALLY freaking pissed. She pointed to the prescription and, “See that 8? It’s narrow and kind of looks like a 6. Do you want to nitpick about that, too? My daughter doesn’t even see well enough to do what you’re accusing her of doing.”
“Well, you’re right. That 8 does look like a 6…” Brunette says nastily as she hands over my medications.
What the hell is wrong with people?! Brunette is lucky she didn’t have to deal with me. I’m not nice like my mom.
If she was so concerned with the date, she should have called my doctor’s office to confirm before filling it.
I would take my business elsewhere, but they are the only pharmacy in town. I’m hoping this was just a one-time incident. Otherwise, Brunette may find herself without a job.
NEWSFLASH: Dearest Brunette, I do not like having to take this medication, or any medication. I don’t like being in pain and having a condition that could kill me. I also don’t know how to get the fuck over feeling guilty about having pain, especially so young. And so far, no medical professional or authority figure has made me feel ok about any of this. And my doctor is taking the medication away soon anyway, so you won’t have to deal with it anymore.
*Her name isn’t Jill. I just parodied a line of an already very funny song.
Last week, I went to my doctor for what should have been a routine appointment. Our appointments usually follow the same pattern: the doctor talks to me about stuff and refills any medications that need refilling. We almost always discuss the same thing – my pain. It’s not always the only topic of discussion, but it always comes up.
After being on the same medication at the same dose for a little over a year, she has suddenly decided to take me off of it, even though it’s helping my pain.
At our first visit, she tried to get me a referral to a pain management specialist (a doctor who exclusively treats chronic pain, nothing else), but found that there is nobody in the area who accepts my insurance. She said she’d treat my pain herself. She seemed very laid back about it. The things she said made me believe that she understood that EDS was just plain painful and that pain, unfortunately, does not discriminate.
She did give me the name of the pain management specialist she wanted to refer me to, and I wrote him a letter. I received a phone call from his receptionist about a week later. He thought I was interesting and wanted to see me in consultation free of charge. He was a wonderful person – kind, compassionate, understanding, and very knowledgeable about EDS and pain in general. Because my insurance won’t pay for any prescriptions he would write, he wrote a letter to my doctor with recommendations for medications that might help me. If cost wasn’t a limiting factor, I’d go right back to him for my pain management in a heartbeat. He and his staff are incredible, and I know my pain would be understood and not undertreated there.
My doctor said she received his letter, but she made no comment other than how nice it was that he was willing to see me for free (and I agree). She is not prescribing the medication he recommended and I did not ask why.
When she first started treating my pain, she would emphasize quality of life, saying things like, “We can help make you more comfortable.”, “You may be on this medication for the rest of your life.”, and “I have to give you a pat on the back for how well you’re dealing with this.”
I told her that I understood that, even with the best pain management in the world, I would most likely have to deal with some degree of pain, possibly for the rest of my life. I know that she is not a magician, she’s a doctor. And when it comes down to it, she’s a person, a regular human being, just like me. I was not expecting her to work miracles, but I was expecting some understanding, compassion, and, most importantly, consistency.
Things have changed. Now, she says, “We don’t like to keep patients on this medication for very long.” and “You’ll just keep needing more and more. You’ll be 40 years old and bedridden, disabled, and blaming me for putting you on this medication.” I haven’t had a medication change or increase in almost a year. I’m 24 years old and already finding myself stuck in bed because of pain. How do I get people to understand that?
I can understand her wanting me to try other medications. I think it’s a great idea to get some x-rays of The Big Offenders (the joints I have the most problems and pain in) to check to see whether or not I have any arthritis. We already know I have osteoporosis in my hips and spine, and it would be nice to know if I have any arthritis we should be treating. I’ll be willing to try whatever she wants me to try.
I’m not as upset about the medication as I am about the abruptness of the change. There was no mention of this during my June appointment. Her whole attitude, and even her tone of voice, has changed. She almost sounded scared, somewhat frantic, at times. I remember what I heard during my previous appointments, and this was not the same. It was as if I was talking to a different doctor altogether. She was so abrupt and different that I feel like I’ve done something wrong. The whole appointment felt wrong. When I asked about ordering the x-rays and starting a new medication that day, she said that she didn’t have the time – we’d do it in a month. As she left, she asked if I had anything else for my “list of complaints”. She probably didn’t mean for that to sound mean, but it bothered me slightly. I realize I’m a pain in the ass, medically speaking (and probably in many other ways), but you don’t have to remind me.
She is a good doctor. She listens to me and gets the job done. She was probably just having an “off” day because she was so rushed – while I was sitting in the waiting room, I overheard that a few of her patients were late for their appointments, and she already had patients backed up.
But I’m starting to think she might have bitten off more than she could chew when it comes to taking care of me.
Still, I feel strange about how the appointment went. It feels like we’re not on the same wavelength anymore. I thought we had established some trust and some kind of routine, and this sudden change has left me feeling a tiny bit betrayed, or at least lost. I’m a little irritated that she chose to change my medications as we’re going into winter – the time of the year when my pain increases significantly. Also, with the pain under a little better control over the past year, I started doing more stuff, including getting a part-time job and considering going back to school. I hope the pain doesn’t increase so much that I have to give any of that up (again).
Have I done something wrong? What do I have to do to get some freaking respect? Do I have to go in there in a wheelchair, crying to get someone to understand? I sure hope not, because that’s not my style. I am so tired of being judged, looked down on, and feeling like a bad person because of my pain. Perhaps respect is just too much to ask for, especially considering I’m too young to have earned it.
At the risk of being thought of as a huge(er) drama queen, I’ll simply say that since I may be looking at a shortened lifespan because of the vascular nature of my EDS, I do not deserve to live that life with untreated, or undertreated, pain. I wish I could find a doctor who got that.
This isn’t such a big deal compared to what happened at the pharmacy on Saturday…