This is one of those must-read articles.
First thing this morning I got a call from some airhead at my gastro’s office. She said insurance had denied the Xifaxan antibiotic. She wanted info from me that doesn’t exist. I am now feeling less charitable towards the gut whisperer.
I left for my mammogram and came within inches of being hit by texting drivers TWO times. Very scary😮 I got to the hospital thanks to TRAX. On the sky bridge connecting the children’s hospital to the main hospital was a kid on some sort of hospital bike. She was smack dab in the middle, impeding traffic, so her dad moved her. She said “That lady is FAT”. Her father tried to hush her, so she screamed at the top of her lungs “But that lady is FAT!!!!!!!” Ummm…thanks, brat. I was able to keep a neutral look and say nothing. What I really wanted to do was run her over.
Every morning when I wake up, my face is fatter and my neck is less distinguishable….plus my hernia is huger. Unbelievable to me, I have been steadily losing weight. That’s because it’s so hard to eat. I am no fan of how I look. I wanted to have some sort of wasting disease before I die…I did not want to get bigger. No one knows more than me how much it sucks to be on steroids. That med has been saving my life and plumping me up for decades. Lately all the rude little kids comment on my hernia or the size of my face. Don’t parents have talks with their kids about what’s appropriate to say in public?
Oh, my gosh! When I stood up for the mammogram, I was wicked bad dizzy. The techs started running around to try to catch me, offer water, etc. I could not even see. Then my left eyelid slammed shut. They were telling me to open my eyes. I calmly explained that I couldn’t because I have myasthenia gravis. Of course, that meant nothing to them. While my boob was squished between the machine’s plates, my phone rang. Not sure who it was, they didn’t leave a message. I only mildly wondered.
Next I went to the bone marrow clinic and got my port flushed. Again, my eyes were rolling all around my head and the 2 people with me were all shook up. I told them I am always dizzy and just had a mammogram…hoping that was a good enough explanation. The guy who did my port access was a newbie to it and was all nervous. He did fine🙂 I thought I was OK, too. By the time I was in the elevator, my whole neck swelled up huge😦 I briefly thought about the ER and decided that was stupid and came right home.
When I got to my building, both the pharmacy delivery and the wheelchair company were parked in front of my window. At that point I wondered if the wheelchair guy had been the one to call? I sat near the door, talking to folks, hoping to snag the guy to ask where my wheelchair components are. I saw his back end leaving, but he was too fast for me to catch. He zoomed off.
So, I did the usual, came back to my apartment, put on a nightgown and took a cold shower. Now I am in front of the fan with the A/C blasting, trying to cool down and regain some strength.
Pfffft! The dang gastro’s office just called again. They want me to make another appointment. I’m thinking forget about it. I’m tired of trying to get help for anything. I’m about ready to sign a DNR order and hope the end comes sooner rather than later. I am beyond tired of trying to get better without IVIg. It’s not out of depression, it’s confronting reality. Lately there is no point to most of my medical interventions.
I used to feel strong despite my disabilities. Now I feel like all my systems are unraveling. It isn’t the first time I have thought I was at the end of the line. I have been greatly blessed to heal and continue on. Now I am older and tireder. That hernia is not going to disappear. Ultimately, my life is in God’s hands.
Another day of fire trucks and ambulances. I longingly looked at the ambulance and wished I could get rescued. No sooner did one convoy leave, then the next 2 fire trucks and an ambulance arrived. The ambulance roared off with sirens blazing. Something is very wrong with the air here today😦 Geezum crow! The third squad just came and went! This is getting ridiculous. I watched the 4th call of the day fire truck slow down and miss our road as the guy in the passenger seat pointed at us. The ambulance was right behind. Since they came through the parking lot, the ambulance door was pointed towards my window. I watched the person be loaded in. Not sure who it was. Along with the ambulance, there was a big pick-up truck that said supervisor for the ambulance company. I think it’s time someone investigated what’s going on inside this building!
There’s a breathing test for myasthenia gravis. On a good day, I usually can only make it to 13….unless I have just had IV Solumedrol or IVIg🙂 Today it’s tough to get to 5. The smell of the garbage in the can was getting to me. I took out trash and recycling. My left eye slammed shut when I opened the gate. Tossing stuff into the bins made me profoundly weak. I could no longer talk, I could just barely control my chair with the joystick. People wanted to know what was wrong. As per usual me….I fled back to my apartment. I then sprayed cold water all over me and sat in front of the fan to dry…with the A/C on. That almost always helps to some extent. The colder a person with MG can get, the better…sort of.
I wish I felt better. I am still having pain and swelling on my left side. It’s most likely swollen lymphs and parotids…as usual….but there’s more to it that I cannot figure out. It must be some conjunction of infection and MG….and pick a few diseases from column B. Infections are usually what nudges me towards crisis. I’m SOB sitting perfectly still😦 Today my boobs weigh a bazillion pounds. I realized if I lift them up, I can breathe better….but I’m too weak to do that for more than a few seconds. They are pushing on my diaphragm. I forgot what it’s like to be this weak.
I am not doing well at all. Breathing is tough stuff. I have tried to get engrossed in music or solitaire or reading, etc. I only forget the struggle for a few minutes, even though I always feel the pain. I have muscle fatigue equivalent to doing a marathon….while doing absolutely nothing.
I was talking to Brian through the window when my upper chest/shoulder area started swelling fast. He could see it from there. At first the swelling fit in my cupped hand. Then it spread up my neck.
It got numb, then hot, then itchy. My tongue has swollen on my left side. Even my earlobe swelled up and got hot.
My whole left side is swollen, hot, prickly and a combo of painful and numb.
The numbness has moved down my entire arm and it’s affecting my speech from my half swollen tongue. Now the left side of my back is getting itchy and numb!
What the heck??? If it were an allergy, wouldn’t I be numb and swollen on both sides?
Brian wanted to call an ambulance, bring me ice, call the RA to look at me, etc. I made him go away😛
Now the pain is trying to be like my last ER visit. The swollen left chest area is getting crushing chest pain. It’s not my heart. My swallowing is feeling tickly. I soooooo don’t know what to do. It’s certainly not bad enough to call 911…but it is scary.
Anybody even have a clue what body part to call it for Googling? Any idea what’s swollen? Ha! And I thought my main problem was MG today!
I was trying to take a pic of the swollenness on the back of my head. Instead I got a pic of my sparse hair. I had no idea so much hair had fallen out.
This is the best pic for seeing the swollen part of my chest/neck/shoulder. What do you think? Geeze….with my reading glasses on and that particular look…I can see a resemblance to other members of my family.
At some point of each day, my eyelid slams shut. It can last hours or days like that. It wouldn’t be all that big of a deal if it were just an eye thing. It’s momentous because it’s the most obvious indicator of how weak I am all over. And dang! I am weak!
I have not been eating meals in “forever”. My guts are not happy with much solid food. My idea of the perfect meal nowadays is Hawaiian ice with fresh raspberries. I eat a brat or 2 or a pb&j or maybe some spinach yogurt dip on bread with deli roast beef once a day, but usually have fruit a couple of times a day. Most food leaves me doubled over in pain. The days that I feel the best and am hyper, are the days I don’t eat.
This morning I decided to cook my old favorite…breakfast sausage, mushrooms, peppers, tomatoes scrambled into eggs with cheese. Notice no onions? I haven’t bought onions since May. I used to consume LOTS of onions. Now I cannot bear the thought of eating one. I kept putting them on my grocery list….and never bought more. I had some onions given to me and used them up, but decided no more.
While I was trying to cook a Rubbermaid storage container’s worth of the basic mix without eggs or cheese, you’d think I was doing some tough task. My legs kept giving out, each time I lifted my arms I came close to passing out, I was fumbling and dropping most everything I touched and my brain was more scrambled than the eggs. Then I sat down and ate. It was like a cannonball to the stomach.
As I relaxed in the coolness, I just got weaker and weaker. I decided to sew another hole in my wheelchair pouch. Who knew sewing was an Olympic sport??? I could barely move my arms to stitch. I was quivering and tremoring the whole time. Trying to put the pouch back on the chair arm probably looked like a comedy…but it sure didn’t feel like one. My arms were not much more than useless stumps.
My face is melting. The MG droop.
stupid, dumb, ever hopeful, I figured I should go to the park and hang out under the trees. I got as far as in front of my apartment and accidentally drove off the sidewalk. I had to unbuckle, get up and push. I was shaking like my own personal earthquake. I sat in the chair and gasped for air a good 5 minutes. It was only then that my eye slammed totally closed. By the time I was strong enough to take a picture, it was partly open. But…most of my ability to see was shot. It was all double and blurry. I struggled to drive the chair back inside.
I stood in a cold shower and then plunked myself in my chair, with my nifty new fan pointed at me. That helped get me over the worst of it. But…I sure feel like myasthenic crisis might be in my near future. If I go to the hospital, am denied IVIg and die….I want you folks to sue the crap out of the state of Utah Medicaid idiots! I would not have gotten this bad with regular IVIg….and I would not have a steroid moon face or high blood sugar. This whole thing is, indeed….stupid!
This summer there have been many, many announcements of the death of MG’ers. It has been a tough summer for us folks. It seems like way more people than usual are in crisis at any one time. And the misery of people not in the hospital and not bad enough to die is through the roof😦 I hate following the crowd, but I don’t have much choice in the matter. I feel close to body failure. Three weeks until I see the new neuro. Since she trained at the U, will she be a carbon copy of the neuros there? If so, I am soooooo screwed😦
These are right outside my bedroom window. I’m allergic to all sorts of pollen. I suspect these aren’t helping my allergies. I think they are beautiful! Sigh….
I’m not sure what to do to get stronger. Once I dry out, maybe I will go lie down with the good old CPAP and oxygen. My lungs are weak.
Gee, that was unexpected. I was on my way to the store to buy bread. A neighbor asked me if I was going to the health fair. What health fair? After talking to one of my favorite old guys, I got there the same time as she did, because she walked. It was at the senior center a block or so away. Out front was a giant colon full of polyps, diverticulitis, cancer, etc. Very amusing🙂
Like everything else involving people in wheelchairs, the tables in the senior center were poorly laid out, with way too narrow aisles. Lots of grouchy pedestrians and chair users! I’m not used to bumping into the sourpusses of the world. Despite the logistics in the building, it was fun seeing the booths, getting free stuff and talking to people.
I was able to connect with the Alzheimer’s people, the neuropsychiatric folks, the phones for people who cannot talk well, the consumer advocates and others. There was a display for a hospice/home health/palliative care place. I started talking to the guy because he looked lonesome. Turns out he is part of some foundation that helps wrecked people like me. He was upset to hear that I have been dumped by one home health place after another because my insurance won’t pay or because I needed too much care. He got very interested in my case and said he wants to look into it more. I got his card and am supposed to email him. He was really mad that I don’t get IVIg🙂
I spent a couple of hours writing a book about me to send to the helpful man with the foundation. It should be interesting. I owe about a dozen emails to nice folks who read my blog and write. I need a clone! My brain power and all that are not great right now.
I woke up thinking about how much different my life feels now with clothes and Birks that fit, enough food to eat, a fan, the wedge pillow, eye mask, food and supplies for Olive, etc. Each thing has made a huge difference to my overall well-being. I want to thank everyone who has said prayers, offered encouragement, sent gifts or been there for me in any way. I feel like a community project🙂
After the health fair, I just kept toodling and went to Smith’s. My prime focus was a loaf of bread. First, I looked up all my digital coupons…and used them! I got a free tube of sausage, a free Carmex lip balm and a free bag of Trolli Sour Brite Crawlers. There….now I have some free high sugar candies to use in case of emergency🙂 I also bought 4 boxes of fresh raspberries for $5. Mmmmm….
Depending on the moment, I am either in tons of pain or am real queasy or am sort of OK. After Smith’s I was too tired and queasy to go to Trader Joe’s for free food and beverage. I was surprised when the wheelchair seemed to turn homeward of its own accord. Last night I only slept 2 hours and woke up drowning in snot. It was really, really smoky out there from all the wildfires. I sat up for a couple of hours of non-stop sneezing and nose blowing. It dawned on me today….I have never seen an allergist in Utah. I think it’s time.
Nothing more has happened when it comes to fixing the mold in here. I get lots of promises and little action. If I can’t improve my living conditions, it’s time to try to improve me. I’m not sure what else can be done since I’m already on steroids, Zyrtec and Benadryl. I have not tasted much of my food in months. Sigh….I need a better quality of living when it comes to allergies.
Oh, oh, 2 ambulances yesterday, now another one today. They had full sirens blazing and were going fast. Now who? Yesterday the ambulances were for a woman who had an unstoppable bloody nose and a woman with a hurt spine. 90-something percent of us are in bad shape in this building. Oh, oh, again. The ambulance left pretty quick. No dawdling.
Hmmmm…..I took pics around the doc’s office. It’s on Foothill Drive. Golly gee…there are foothills right there! I wish I could have taken better pics of the mountains. Most of them came out with sun streaks.
I don’t get out much. This didn’t seem all that far from where I live, but it was a whole new world to me🙂
I was particularly fascinated by the pointy mountain. Too bad I could not zoom further. The trees growing on it looked comical. They were each spaced far apart.
The other foothills weren’t pointy.
The foothills got flatter…but then the big mountains popped out to the right of this pic.
I liked the office right away when I saw the entrance.
I’ve always been a fan of viney purple things🙂
It was like a private little world. Next to this was a waterfall fountain. Very pretty and peaceful🙂
Wednesday I took pics of the foothills near downtown. They are very dry and brown…and naked.
When I get off at the 9th South TRAX station, there’s a community garden there. Sure looks like the height of summer. I liked the pea pod playground equipment🙂
Near my house are a few sunflowers taller than buildings!
This afternoon I had a shrink appointment. When I told him the nice stuff the gastro doc said, he agreed. Something about 9 out of 10 people end up bitter sourpusses when ill. He thinks I handle things well and am surprisingly happy. He says I am humble. Ha! I sure have everybody fooled! He was also surprised to hear that I had given up thoughts of leaving Utah or getting a van to travel. I decided I was going to make the best of it here. When the time came, that was an easy decision because it’s what I wanted…not something I was forced into. I love watching people’s faces🙂 I did not give up my dreams…I created new ones.
Then the pharmacy came bearing gifts and then took my paper prescription for the Xifaxan. Soon after the delivery person was gone, I went out to get the mail. Nothing….so I went outside to hear the latest gossip. Two ambulances were here today. Joe, the manager is leaving for a job at another building. Someone brought in 40 cases of bbq potato chips to give away. Most of us have diabetes and we swapped stories about hypos. My favorite GP is transitioning from hands-on doc to administrative stuff. Rhett’s aunt called me. I called Rhett and left a message for him. In all things, life marches on. I am grateful that the world is always changing. It’s not always easy to change, but it keeps us on our toes🙂
Olive and I watched the sunset🙂
Whew! I made it there and home. The doc’s practice is called the Gut Whisperer. He definitely deserves the title. He’s one of the most interesting docs I have ever seen. He has at least half a dozen MG patients, which by itself is noteworthy. Before seeing him I had to fill out at least a dozen pieces of paper. He read out loud when he got to the part about all my diseases and operations.
We bantered back and forth about stuff and he stopped, looked deep into my eyes and said I was a remarkable person. He said there wasn’t a trace of oh, poor me or bitterness in my personality. I didn’t know whether to blush, thank him or argue :-P He laid it on thick. Then he described some of his sad and mad patients. I told him after watching my father’s anger, I did not want to grow up to be perpetually pissed off. I have my moments, but it’s more like a quick storm. It was weird that he made that the centerpiece of our visit. Maybe he likes to add positive reinforcement to make people’s guts heal.
He then rattled off exactly how I feel and what happens to my guts. That was amazing! I figure he has been a doc for a while and understands gut distress. Cool🙂 Then he said the first thing he wants to do is give me an expensive medicine. I’m supposed to take it for 2 weeks and see him in 4 weeks. I looked it up. The dose he prescribed costs $1713! Wow! It’s called XIFAXAN (rifaximin). My next favorite thing about the guy was his face when he found out insurance will not pay for maintenance IVIgs. He was disgusted and said they were stupid🙂 Other than that, he was all sweetness and light.
I am still all shaky and tremoring from last night. I thought I was getting better, but it just keeps happening. My blood sugar is 130, which is acceptable. Must be my body is skittish after last night. My brain sure is! That was one of the scariest things that has ever happened to me. I was aware of what was happening and felt little power over my blood sugar plummeting. I wasn’t so sure I was going to be able to make and eat a pb&j sandwich. It was hard to think and hard to do anything. I can for sure see why insulin dependent diabetics keep glucagon and other things close at hand to deal with sudden, unexpected lows. I’m thinking maybe I should get some shelf-stable boxed chocolate milk.
I have a couple more appointments today, but wanted to post this for now. As long as nothing else weird happens, I will write more later. I have pics!
All of the sudden I felt very light headed and shaky. Took my blood sugar and it was 61😮 I was scared!!! I was trying to eat some jelly to bring my blood sugar back up. Kept dropping anything I touched. Still extremely weak and shaky. I’m up to 70 as I type. That’s it for blogging today. Now I understand why glucagon is important. Yikes!
Olive tried to wake me up, but I kept slipping back into restless sleep. Then the lawn care folks went by my open windows with the gas weedwhacker and then lawn mowers. That woke me up! At first I thought the funny smell was from the outside machines….but it smelled more like plastic and some sort of chemical…not gas or oil.
I sat down to take my blood sugar. It was low, but not critically low. The smell was stronger and it was hard to breathe. I thought maybe I had accidentally left the living room fan on low overnight. I turned it towards me and saw the blade was going around about twice per minute, and sometimes not at all. The smell was coming from the fan’s motor. Dang it!
I tried banging on the fan, moving it around, turning the switch off and on. No such luck. It was dead😦 I got the fan from the bedroom and put it next to my chair. After about an hour, my chest hurt all the way through and my ribs were sore from struggling to breathe. I moved the curtain out of the way in the bedroom, so that there was unobstructed airflow. On my way back out, I realized suddenly two of the salt lamps were dead. I wondered if there had been some sort of electrical surge? I put in new lightbulbs.
I sat back down in my chair, totally gasping for breath. I was about to cry. There was a knock on my door. I opened it to find a new fan! That was surreal!!!! Oh, wow! I love, love, love this fan! I can swivel it to direct airflow up or down. It’s way nicer than my cheapo box fan🙂 Love at first sight….and even more love sitting here with the breeze blowing on me🙂 There was nothing with the fan to say who sent it. Whoever you are, thank you a bazillion times over. I can breathe a heck of a lot better with a fan.
Notice who snuck in the pic? Olive says hi🙂
I have a gastroenterologist doc appointment coming up this week. It’s in a place not well served by public transportation…..at least from here. I was about to call paratransit for a ride, so looked up the temperatures. It won’t be 80 degrees until 2 hours after I need picking up. Why does this keep happening?!?!?!?!? Weeks of 90’s and 100’s suddenly get “cold” as soon as I need paratransit. Argh!!!!!!! I HATE UTA’s paratransit! It couldn’t get much stupider than the way it’s run now.
Google maps says it’s a 13 minute drive from my place to the doc, or more than an hour each way by bus. It can take up to 4 buses to get there, depending on which route I pick. Shoot me now😦
I got dressed and made a run out to the dumpster and recycling to get rid of the dead fan and recycle the box. A woman from yesterday’s concerned citizen group yelled for me to talk to her. She wanted to know if I had seen a doc or been to the hospital. Nope! I told her there really isn’t anything docs can do for me at this point. I’m old and worn out, with too many things wrong. She burst into tears! Turns out the paper-thin woman’s death is imminent and this woman is having a hard time dealing with it. I’m afraid I’m not very good at soothing. I said it’s a blessing to die when we get all full of diseases. It’s hard to imagine wanting to live with all systems failing. She only cried harder. I was saved by the bell. Her phone rang and I was able to escape.
But…..it was like jumping from the frying pan into the fire. My closest guy friends were all yakking by the mailboxes. I started out glad to see them and all cheerful. Then my left eyelid slammed shut. Then my voice got slurred and nasal and broken. Then I had wicked bad head pains. Then I got numb on my left side. My mouth would not move on that side. The guys were freaking out. I was, too, but I wasn’t going to let them know. When they were all talking, I quickly slipped away.
I don’t remember much for an hour or two. The left side of my face was so numb and immoveable that it was creepy. I gradually started being able to think and see and all that. Now most of my face works and has feeling again. These things are getting closer and closer together. Sigh…
My neck is now officially bigger than my face😦 I love and hate steroids! My face is still stranger than I thought it was. This pic was taken around 8 PM. It was about 8 hours ago when I had the head pain and got numb. No wonder everyone keeps saying I look swollen😮 So….was this another mini stroke? How many will happen before I get stuck that way?
I tried to be obedient. I went online and did some of the classes for my insulin pump. For now…in the beginning, it’s hard to imagine I will ever learn all I need to know! I will keep plugging away. I wanted to look up something about the pump and accidentally stumbled on the price!!! Oh. My. Gosh! And that’s just part of the system😮 So far, they still need an iPhone to connect to. There have been notices for months that someone is developing a program to use with Android phones, but it hasn’t happened yet. I’m waiting to hear what my trainer has to say about needing a smartphone.
Oh….and speaking of expensive medical equipment, my new power chair is still a giant paperweight. No one has brought back the parts or talked to me about repair. My old chair is not doing well. Dang.
First my hands, then my arms, now my feet and legs. I want to know what happened to my skin? I have been putting lotion on all along, but last night I got those stupid lotion pockets under my skin on my feet and lower legs. Also, the rough, dry skin turned a very strange white between the sunburn and my toes. It looks like lotion that just needs rubbing in, but it’s not. I have had at least a half dozen cold showers since I put on lotion yesterday. I tried rubbing, then scraping the whiteness. The lotion is definitely one with my skin. I cannot be felt or moved.
So…my skin likes to hoard pockets of lotion within my skin. Bizarre!
Olive usually gets miffed when the camera is pointed at her. Sorry….maybe😛