A Post With No Name
It has been a long time since I wrote here, and yet I find myself struggling to come up with anything interesting enough to bother with a post. So I think this will be a series of small posts, or whatever happens to come out of my fingers as I type.
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On my birthday I had the HIDA scan done of my gallbladder. The first hour was easy, just lying there as a dye collected in my liver and gallbladder. It was boring but I have had longer MRIs so I could easily pass the time. Then they bring in the syringe of misery. This is the hormone that causes your gallbladder to contract. He warned me it "might cause a little nausea and cramping". Okay, that is like saying the Pope might be a little Catholic. It is injected over five minutes, and within seconds of the first dose I was violently nauseous and felt like I had been kicked by a mule. And each time he added more medicine it upped the fun factor. I begged him to just slam it in all at once and get it over with, but that was a no go. The nausea and pain lasted about 20 minutes before abating. I don't have any results yet because on the day of my follow up appointment I did something stupid involving a shower and was in too much pain to go. I now have proper respect for the shower.
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The day after my birthday I went out to eat with my mom, my brother, and Little Bit (my 6 year old niece). Little Bit had very proudly chosen my birthday card so it not only had holographics but played music at an ear splitting decible when opened in the restaurant. :) She loves those musical cards. Its so cute, she signed it herself and managed to misspell her own name. She was showing off a new dress she had gotten when they went back to school shopping and talking about the great conundrum because the had not just the dress in that style but also a skirt and a shirt and she had the hardest time deciding which to get! I had a feeling she might be a bit of a princess when she had to have access to the floor to ceiling mirror at 12 months to approve or disapprove whatever outfit I put her in for the day. Yet she is also tomboy, playing in mud, fishing with her dad, and taking karate.
I ordered crab legs for dinner (they are low fat and don't hurt my stomach as I do not use the butter). I can not figure out how to eat crab legs without things going flying and generally making a mess. Little Bit decided to point out to me that I was being "very messy eating your crabs, getting it all over the table. I informed her I was not taking etiquette lessons from the child who two minutes earlier had two macaroni noodles stuck in her nose to look like a seal.
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Gollum (the pituitary microadenoma) appears to me a prolactinoma. He is sending out mildly elevated levels of the hormone that causes my body to think it is pregnant or nursing. It is possible that the low levels are from my polycystic ovary disease and Gollum is doing something else. We will recheck everything in October, but I am starting a new drug to bring down the prolactin levels this week. I really like the endocrinologist. He is trying to look at the whole picture of my presentation, as he feels that there ae too many diagnoses and something should be able to explain most of my issues. He is a well respected and highly published academic doctor so I am hopeful he may find something.
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I will try to write more soon, more that is humerous and not so boring. Just not a ton of things going on right now, and it has been too hot for me to go out of the house lately. I did go to Target on Tuesday and today for medications and a little wheelchair bowling on the side :) I also took some birthday money and went to my favorite smelly stuff store (Bath and Body Works) and stocked up on hand sanatizers and lotion. Today I had to replace my expensive earphones for my iPod. The others got a short in them and only one ear worked. I hate having to buy the expensive ones, as it feels like shoving money into my ears, but I sleep with my iPod on listening to audio books and so the earphones need to be comfortable, durable, and have good sound to them. I also found a pair of long pajamas with owls on them so that made me very happy! Owls make me very happy!
Thirty
Thirty years. That is thirty more birthdays than the doctors predicted I would be alive to celebrate. Thirty more years of life. Thirty years of tears and laughter, of falling down and standing back up, of wonder and amazement, of learning and learning again, of sacrifices and blessings, of giving and accepting, of seeing through the artifice, of passion and determination,of family and the most incredible friendships, of love. In thirty years I have laughed more than I have cried, I have gotten up each time I have fallen down, I have never surrendered to the definitions expected of me, I have been blessed to love some of the most incredible children God has put on this earth, I have learned the power of forgiveness, I have seen the human soul at its most fragile, and I have learned to live without fear of judgement. Over thirty years I have witnessed sunrises and sunsets, chased fireflies across a field of wildflowers, climbed haybales and slid down, splashed through a mountain creek, slept beneath the stars, jumped in mudpuddles, danced in the warm spring rain, received flowers from someone who loved me, walked the ocean shoreline on a crisp spring morning, sat around a summer bonfire, learned to see the world through the eyes of a child. I have been richly blessed in thirty years. I can not count all the blessings that I have received, but I know that they number more than the stars in the sky tonight. I am ever thankful for these thirty years and however many more I am given to not just live but be alive.
Name it and Claim It
Some Wishes Bite You in the Arse
I have been wishing for answers for the GI symptoms, for the neuro issues, for the dysautonomia, for the weird random symptoms, for the whole package to be wrapped up in shiny paper and topped with a bow. Well that wish can keep looking for a star that will let it hitch a ride. But I did get a few of the wishes within the genre granted and it turns out perhaps I should have been more specific because they seem to have come around and bitten me in me arse. My neurologist of all people figured out the severe nausea and stomach pain when I eat most anything other than simple carbohydrates. It should have been so obvious that I am now, more than ever, going to be switching GI doctors in the practice. My body, it turns out, is incapable of absorbing fat. Any fat that goes in up top comes out down below and causes as much misery as possible along the way. Now what we do about this I have no idea, I am hoping that we will work this out at my next GI appointment in a week or two. But it is an answer. Then I got the results from my brain MRI that was done almost two weeks ago. We did this one to try to diagnose the reason I have no sense of thirst, so we did a special focus on the hypothalamus and pituitary glands. My brain as a whole was structurally normal. The hypothalamus passed inspection. However, the pituitary gland has a hitchhiker. The pituitary gland is 9mm in size and I have a 3mm microadenoma that has decided to make itself at home. Anything under 10mm is a micro and adenomas are almost always benign. So it is a little guy, but he wasn't there on my last MRI and I would prefer he not grow. So I will be seeing an endocrinologist at some poing in the near future to see what effect the little guy is having on my body. Little guy needs a name. Any suggestions are welcome. I wished that we would find something tangible to explain some of the intangible symptoms, but perhaps I needed to be more specific once again.
I am very tired, so this is going to be short and strictly medical. I apologize. I will try to do a regular update very soon!! Thank you so much for reading and caring!!
Bad Girl
Yesterday I was a very poor representative for those of us who use wheelchairs as I allowed my sarcastic temper to have fun. I was frustrated because I had wasted 45 minutes at the lab because the doctor forgot to mention to me that I needed to be fasting for my vitamin levels to be checked. Then the mall was crowded and apparently they have not heard of air conditioning because I swear it was cooler outside than inside. So my first victim was an older guy that I got stuck behind in traffic heading to Target where I needed to get my 14 prescriptions. He was talking on his cell phone and would suddenly just stop walking, causing me to have to suddenly just stop rolling. When I was finally able to clear him, I pulled up next to him and informed him that suddenly stoping like that could be dangerous for his health and I added in my opinion of his intelligence.
Victim number two was a teenager working at Auntie Annie's pretzles. I should point out I was wearing a white skirt. I ordered a pretzel and a medium drink. She tossed them onto the counter in front of me and gave me my change. I was about to put $5 in the tip jar because I know they work for less than minimum wage because they can receive tips when she just up and walked away. She did not dry off the drink cup, she did not offer me a tray, and she did not offer to carry the items to the table a whole 15 feet from the stand. I muttered loud enough for her to hear "thanks for the help. there goes your tip witch" only I did not use witch. I am bad. It was a bad day. I had just spent $200 on medications and missed the bus by 5 minutes. I dried the cup off with napkins and stuck it between my knees, like I usually carry things when in pants, and balanced the greasy pretzel paper sleeve on my lap as I wheeled over to the table. I was victorious.
Victims number three were a gaggle of older women walking in a long group across the hallway of the mall. I had picked up some good speed because there was a slope downward. As I approached they realized I was not steering away and broke off into two groups. Passing through I announced "score, 7-10 split".
Victim number four was on the bus. He was blatantly staring as I got on the bus and was being strapped down. It was not your usual look of curiosity but rather "eyes are falling out of the head staring". So I looked at him and said "It's called a wheelchair". Missed opportunity to educate but it felt so good to just stop the staring, living in a fish bowl feeling.
In more positive and fun news I totally messed with the mind of the customer service worker at Payless. Due to scheduling issues I missed my June Botox appointment which means my feet and legs are as tight as can be. Shoes are a challenge and trying to put my braces on is a joke. Well we came up with the idea that ballet slippers would be perfect because they are so soft and giving, and its not like I am walking in them. So I was looking at the different sizes when she came up to me and asked "Can I help you find what you are looking for?" I replied very happily "No thanks, I have found it. I am just debating size." There was a long pause and then she answered with a shakey "Oh, okay. If you need anything just ask." I can not imagine what was going through her mind when a chick in a wheelchair is buying ballet shoes. I never explained and left her perplexed.
More Randomimity
Not much has changed - each day is like shampoo:lather, rinse, repeat. So there is nothing big and exciting to write about. So instead I am going to write a few little random bits and pieces that do not necessarily go together except that they all came tumbling from my mind. This could get scary. :)
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Teaching Tidbit
When a new student transferred to our school district with an IEP in place we had to accept that IEP and place the child accordingly and then we had 9 weeks to call a new IEP meeting to discuss what we felt was appropriate placement with appropriate goals. Nigel was a transfer student who had just arrived in the classroom, coming from a district where you received services even if you were just considered at risk and were not delayed. They had more money than we did. It was lunch time and we were pouring milk into cups. He looked with pure disgust at the cup placed before him and then spoke up. "Excuse me, but at home I have a nipple." (meaning that at the age of 4 1/3 he still drank from a bottle) The principal happened to be in the classroom and she immediately responded "Well at home I have a Marguerita. Life's tough kid."
Nigel also tried to do a "gangster" deal with one of our other students who was using a stander to stretch out his hamstring. He slid up next to him, eyes darting to make sure no one was watching and then whispered in a grovelly voice "Heyyy Samuel. Wanna get down??"
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Oasis in a Desert
I have mentioned before that I never get thirsty. This is a hard concept for people to understand because it is completely natural and innate for them to get thirsty. For me a sense of thirst is as foreign as a sense of sight is to an individual with blindness. I have figures out what it might be like from reading and from wanting more of a beverage that tastes good but other than that I have no idea. We have tried every low tech problem solving idea known to man and I must confess I have left a Hansel and Gretel trail of forgotten water bottles I was supposed to carry with me and drink from. We tried scheduled drinking every 3 hours, but I would be in the middle of something when the alarm went off and then never remember to drink. So finally after years we are doing a brain MRI focused on my hypothalamus to see if we can determine a cause for this lack of thirst. The dehydration is causing problems with my already damaged bladder and my already ill functioning blood pressure so we need a plan here, an oasis in the desert. Although an oasis in a dessert sounds pretty good too!
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Last weekend I decided that since it was summer it was time to paint my toe nails. This is like a circus side show act and I could easily charge admission for a crowd. I do it myself only because I can not trust anyone else not to bump my toe joints, which is a pain unlike anything other. It is like playing Twister with nailpolish and contorted feet. So I begin by propping myself on the floor with the necessary supplies. I also take extra muscle relaxing meds and pain meds. Then the contortion begins. It is like trying to paint the toe nails of a cat. My muscles do not cooperate, I end up with nailpolish in places I definitely was not aiming for, and my toes rest against each other in a very unhelpful manner. Finally about two hours later and half a bottle of nailpolish remover I am satisfactorily done and exhausted. I won't paint them again for a few months hopefully.
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Tummy Time
Next week I have an appointment with the PA at the GI office. I had requested to see the other doctor in the practice for follow up because I just could not communicate with the doctor I have been seeing - he even admitted more than once that he was not paying attention to me. The secretary - AKA gatekeeper- decided it would be too long to wait to see the other doctor so she settled on having me see the PA. I don't mind, I have seen the PA before and she actually listens to me and understands what I am saying. My problem is not swallowing right now, the problem is that my diet is limited to basic carbs otherwise I suffer severe stomach pain and nausea. Living off of breakfast cereal, tortilla bread, toast, melon, crackers, milk and occasionally cheese can't be providing me with all of the vitamins and stuff that I need. Its the unintentional vegetarian diet.
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Heat Hermit
Due to the fact that the Dysautonomia has taken a hammer to my internal thermostat, I have to be very careful with temperature regulation. In the winter I can not maintain my own body temperature and rely on heat, clothing, blankets, and hot drinks to keep warm. Winter is easier because I can always bundle up more. In summer I can only get so naked before breaking local laws. I have great trouble keeping hydrated, although I do supplement with popsicles. And I become a heat hermit. Any day that the temperature or heat index spikes around r over 90 I can not leave the house because I can not cool myself down enough and I become at risk not just of an autonomic crisis but also of heat stroke. This summer is off to a hot start and I have already been quarantined due to heat more than a few days. And right now we only have one air conditioner for the entire apartment, positoned in the living room. I can get another one added due to medical need but it is too late this year as it would not be added until September or October at this point. Next year I am starting the process in March. So we have an elaborate series of box fans conducting the cool air to the small bedroom turned computer room/tv room where on hot nights I sleep on the couch. When it is not roasting I cool my bedroom off by opening the sliding glass door until just before I go to bed. I close it, and the curtain, because the sun has an annoying habit of shining early in the morning, which wakes me and anyone who knows me knows that waking me that early in the morning is a dangerous thing to do.
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Happy 4th of July!!
Things that go Pthhhht
