Wendy The Wanderer

Stories Of My Life

How many times now?

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Every time I insist I have an infection going on, I am told multiple times that I don’t. It gets old…very old! I have had this infection inside and out pretty much all summer 😟 I was on antibiotics in May, had the blood transfusion in June and it must have been soon after that the chills and fever started. I don’t understand why I have to keep enduring stuff for weeks before I get taken seriously. It sucks.

Infections and fevers are the classic triggers for myasthenia gravis exacerbations. Maybe I will get lucky and treating the infection will make my MG better, too. I need a break!!!!

What do I do wrong? I tell docs I have a fever. What is it about me that makes doctors forget how to do their thing?!?!?! Why has this been happening my whole life? So frustrated!

Tonight is especially hard because I am burning up. Earlier I had horrible chills. It took all day for the doc to change the prescription from clindamycin to doxycycline, so I have to endure tonight before I can get the new script delivered. This really sucks.

You know what else sucks? All the people doing meth, crack, spice and who knows what else. Seems like every person who has moved in this year does drugs. There are plenty more druggies that lived here already. Disgusting 😟 I keep looking out the window and glaring at one of the repeat offenders.

Here’s hoping antibiotics helps. Wouldn’t it be cool if my voice came back? I miss it.

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Not very funny comedy of errors

Got a phone call from the door. It was the pharmacy delivering Lantus and Clindamycin. What?????? The antibiotic has my internist’s name on it. Why did he prescribe it? We didn’t talk about it.

Aha! No sooner did I write that and the phone rang again. It was the lab results from the belly infection. It’s staph. That’s why the antibiotics. I had already written an email to the doc telling him not only is Clindamycin contraindicated for MG, it gave me c diff last time. He already knew that, but it’s probably buried in my records. That’s why I had to be on IV Ertapenem the last two times. Ugh!!!!! This is such a mess! Antibiotics almost always make me sicker and weaker. I don’t have any reserve strength right now 😩

I have all these things I should be doing today to advocate for myself. All I want to do is sit here and cry. My brain cells are barely here. My head is in la la land. I feel like I am not really “here”.

I need a fleet of angels to help me. I just can’t deal with much more than struggling to breathe. Keep praying, please πŸ‘Ό

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Not a day goes by….

Besides myasthenia gravis, I wonder how West Nile Virus has permanently changed me. My brain has certainly never been the same! WNV gave me some sort of anxiety that went down to my very cells. All along, as I thought I was getting better, in retrospect, I wasn’t even close. The whole thing was scary! It seemed like something new and bad happened daily for months. Then that blended right in to the two belly operations which blended into the holes in my intestines which blended into my MG and whatever else it is going on right now.

Can you imagine how valiantly my body has been fighting to repair itself and get better? I have spent most of my life trying to stay alive long enough to watch my daughter grow up. Now there are grandsons. Those three people have kept me alive.

In 2005 I was baptized into the Church of Jesus Christ of Latter-day Saints. That was a huge change for me. Up until then I had always believed in God, always had faith, but there was a lot I didn’t understand. It was fuzzy and confusing. Then I learned about the plan of happiness and read the Book of Mormon. My belief and faith now made more sense. I finally realized I am a beloved daughter of God. Jesus did what he did for ME! With my newfound understanding, I was happier than I had ever been, despite the evil that the world threw at me.

I think about all that a lot. There’s a woman here with no children and no religion. I like her 😊 But…her situation makes me sad. She had a hysterectomy a few months before I did. She is almost always feeling down. She has no firm foundation to cling to through thick and thin. She has way more money than me, but she feels empty.

One thing being low income has taught me is interdependence. With plenty of money, you just buy some version of happiness. Without money, it’s more important for folks to look out for each other and depend on each other. In some ways, wealth seems like a curse.

It seems very obvious to me that the super wealthy are sociopathic mentally ill people. They are the extreme example of greed and not loving others as themselves. How much money and power do they need? Why????? What would possess someone to go that route instead of simply enjoying their lives and families and friends? Creepy…

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Just now, the General Conference talk by Elder Holland came on again. He is saying all the right words, but are the LDS people taking it to heart? This is the talk about caring for the poor. Utah does not include dental benefits for adults in their Medicaid benefits. And if someone like me lives in a ward with greater needs than money to spend on the poor, how am I supposed to ever get my teeth fixed? They hurt every single day 😞 The political climate in Utah is what is keeping me from the medical and dental care that I need. How is that OK in the context of what Elder Holland is saying? Way too many people don’t connect the lines between their politics and my suffering. They just blithely stop up their ears, close their eyes and whistle past me. Kinda hard for me to not take personally.

Yup, money is a tricky thing. We all need some to pay for food, clothing and shelter. How is a disabled person supposed to get enough to live on if it doesn’t come from the government or church? There are rules in place to keep me from getting money. It’s a crazy system meant to put and keep someone like me in jeopardy. I don’t know what the way out is.

I woke up this morning with a crushing headache. I went to bed at 7:30 PM, got up at 9:30 AM, but there were many hours in the middle that I wasn’t asleep. I choked a long, long time. I am exhausted. I kept checking the oxygen hoses, but there weren’t any holes and the connections were tight. I felt like I was suffocating. The elephants have been sitting on my chest all morning.

I have to keep wondering…why does God keep me around? It seems like it would be so easy to close my eyes and slip away. I hope that somehow my presence on earth makes a difference.

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Reaching the end of my endurance

I have been awake much of the night choking. My tongue isn’t working right 😞 It keeps getting in the way when I breathe and swallow. I am in a lot of distress. I just want to go somewhere, throw myself at their mercy and get help. My neck is So. Darn. Weak! My head pain sucks.

I was up from around 1-5 AM. Then for the next 5 hours I went through buzzing, quivering muscles, blasts of cold, creepy chills and what felt like nonstop choking. If TRAX had been running at 5 AM, I would have gone straight to the ER.

When I woke up later, I stuck my head in the sink, combed my hair and was off to FNB. I was third in line, so got some good stuff πŸ˜€

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I had the ham roll up for lunch, with cinnamon pastries for dessert.

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I got very weak while gone and my left eyelid shut. Even the people who have been patient with me since August can’t understand much of what I say now. Then for every few broken up words, I choke until I can’t breathe. So much fun!

I was looking at Adirondack foliage pictures I took in 2010-2011. Nice πŸ˜€

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Oh, poor me day

I spent hours pouring over my insurance handbook. I had a list of every neuro that my insurance would pay for, their address and phone numbers. Then I looked up where they work, online ratings, what sort of neurological stuff they specialize in and how long it takes to get to them on public transportation. A local woman with MG wanted me to call her. I hated “talking”. It hurt and was humiliating. She thought I should go to the ER ASAP. I hung up and cried. Then I started contacting doctor offices. Every word was more broken up than the one before. Nobody could understand much of what I said. I found a local neuro with a 4 to 5 star rating who takes my insurance. They gave me an appointment for March 20, 2015!!!!!

I got off the phone and sobbed and wailed and choked and wheezed. I have been crying ever since….for hours.

And now the evening chills have started. We all know what’s next 😞

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Mz Never Helpful

The caseworker I despise called this afternoon. Her insurance company will NOT authorize an out of network neurologist and will not authorize payment for the MTHFR test. Basically I am back at square one. What good does it do to go to doctors if the insurance withholds what they request? When she asked if there was anything she could help me with I said “no, you are never helpful”. She quickly hung up the phone. Yes! I hate talking to her.

I’m am trying to figure out what’s next. I sure miss things like breathing OK and being able to talk! Will anybody ever help me? My internist says he is not qualified. So who will my insurance pay for that is qualified to sort out the symptoms and diagnosis? I was so hopeful yesterday.

There are eleven neurologists within a 50 mile radius who take my insurance that are listed in the insurance manual and NOT part of the university system. I know at least one of those is no longer practicing. I guess I have a lot of names to research.

I totally forgot about FNB. Looked at the clock and it was 10:47. Got dressed and made it there just as it started. Glad for bananas. I put them in the freezer for smoothies.

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Came home and have spent the rest of the day feeling sick. Same old stuff.

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A new paradigm?

Hope you like that Heather πŸ˜€

My doctor is afraid there is something worse wrong with me than MG. Many of my symptoms go with ALS and some very scary and rare motor neuron diseases. Personally, I would rather stick with MG! That’s rare and scary enough.

I will need to go to a very smart neurologist. I don’t even begin to understand how they figure this stuff out. At least the treatment for some of the possibilities is IVIg! I KNOW that makes me better.

The more I learn about the different types of dysarthria, the more it freaks me out. This could become a permanent thing due to nerve damage and muscle wasting. The doc thinks I have nerve damage 😞 I prefer the theory that I am just weak from the MG and need to get stronger by improving the neuromuscular junction with IVIg! This whole thing is getting scarier and scarier.

If you want to be scared with me, you can read about motor neuron diseases. Many of the things I regularly talk about are listed as symptoms.

http://www.ninds.nih.gov/disorders/motor_neuron_diseases/detail_motor_neuron_diseases.htm

Now I am going back to bed!

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What a long day!

I left around noon and came back after 5. That’s torture for someone as weak as me. We had wind gusts up to 60-something mph in Utah. Going into my doc’s office, my eyes got full of flying dust and grit. I flushed them with water, but now they hurt and sting.

The nurse caseworker that I liked, ended up coming to my appointment. I was VERY reluctant. She assured me she was there to help my internist help me. She reminded me that she is the one who did the paperwork and phone calls to get my blood transfusion. I hope she is for real, not like the evil caseworker.

I spent 2 hours in the exam room. I had written out the story of me getting weak and paralyzed, a page of symptoms and a page listing what I thought were the most important issues that had to be dealt with NOW.

First the nurse/caseworker and I went over everything. She and the doc got excited about this week’s video of facial and tongue fasciculations. They were also amazed at how I could lift my head with my hands and talk with a normal voice. I was so tired that tipping my head way back to talk only yielded a few good words before choking commenced. I LOVE making my voice come back!!!!! I miss it soooooooo much!

My doctor kept wringing his hands and asking what he should do. He still thinks I should move back to Vermont. He doesn’t know how to fight the system any more than I do. The nurse/caseworker thinks she can get me to an out of network neurologist who will be able to treat me. She said my videos prove what’s wrong and they have to give me appropriate care. Ha ha ha ha ha ha….choke, cough, choke. I will believe it when I see it. How many times have I heard that now in Utah???

The doc ordered the MTHFR gene mutation test. The nurse and I giggled about what word it looks like. Some of us never grow up πŸ˜› Now we have to wait and see if insurance will pay for it.

The doc says I shouldn’t worry about a GFR of 54. He says it’s because I’m old. I hope he’s right. Several of us with WNV have the same number. Long term, WNV can cause kidney disease.

I had a heck of a time getting out of the doctor’s chair and back to my wheelchair. All that talking and coughing and choking made me feel like I weigh a bazillion pounds. Oh, speaking of coughing, that lump that popped out on my right rib cage, just under my breast, is my intestines! 😩 He says between my hernia and the choking, it pushed my intestines up and out 😳 We all admired how huge the hernia is, especially when I cough. Then the doc swabbed my belly wound to have it cultured. He is waiting for those results before ordering a CT scan to see if there are any new holes in my intestines. He wanted ME to tell him where the infection is that’s causing my fevers. I said I don’t know if it’s the belly wound, intestines or lungs. Each one acts up.

The doc gave me a 4 page computer summary of the visit. 3 pages were the med, problem and diagnosis list. Geeze! I look bad on paper 😜

While I was writing, a fire engine, then an ambulance showed up. I caught their lights in a pic.

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I then stuck my head out the door and they went to my ex-neighbor’s house. Uh, oh. I think she goes to the hospital at least weekly. When I came home from my doc appointment, she was sitting by the mailboxes. I stopped to say hi. She was coughing deep and phlegmy. Someone told me she went back to smoking 😞 She has been a lifelong smoker. I am surprised she has lived this long.

I started getting chills between the TRAX station and home. An hour after taking an 800 mg Motrin, my temp was 101.9. I have been going back and forth between chills and burning up for a few hours now. Yuck. I feel unwell.

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Olive has been watching YouTube videos

I woke up Wednesday morning to this.

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I wish she had watched the one where the cat rolls it back up!!!

New pet trick from Olive. Sigh….

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More fun and excitement

At the very last minute, I decided I was strong enough to go to FNB. I was instantly sorry, but kept going. I was supposed to be second in line to get food, but guess who jumped the line? If she asked, I would tell her she could get in front of me. People like her make me crazy😬 All one can do is shake their head.

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It took quite a while to get from the front door to my apartment when I got home. Every time I got a few feet, somebody else came along and wanted to talk. Finally I had to make a mad dash to the bathroom. It was yesterday all over again.

Then I was weak and shaking. I could barely see through the blur. I had enough time to watch Dr Phil and it was time for my counseling appointment. I love talking to that guy 😊 I showed him my new trick of holding my neck up or putting my head back as far as possible, and then my voice worked a few seconds. He seemed surprised and impressed. Me, too! My voice sounds soooooooo good! But then I choke. I just don’t have enough air to talk.

I like when my counselor gets mad on my behalf. He is amazed at what has happened to me medically. He thinks I have been done wrong in a big way. Me, too.

I have a hard time wrangling my phone correctly. It had a lot to do with weakness and muscle spasms, but also my missing brain cells. I can’t tell you how many times I accidentally delete emails in the middle of reading them. When my cellphone speed is throttled, I can’t even open voicemails. Then tonight I was shaking so hard that I dropped the phone. Picked it up and the voicemail had vaporized!

It can take me hours to write a few sentences. My finger bends at unnatural angles and hits the wrong virtual keys. Sometimes I just can’t think well enough to make sense. I find new ways to be incompetent daily 😳

Wednesday is apartment inspection day. We got long lists of things that must be clean. Can you imagine being as weak as me and trying to clean? It took me hours to vacuum at 5 minutes or less per try. I had to sit down and gasp for air after moving each piece of furniture. My entire body is one big twitch. And it hurts!!!! Good thing my apartment was basically clean to begin with. I still have to mop. That’s harder than anything, even with my cool swivel mop with different terry cloth pads. I usually mop at least weekly, but never everywhere at once! I am sure my apartment would pass without lifting a finger. I guess I am suffering from pride.

It’s an hour until I am supposed to take Mestinon, but I am choking now. I did waaaaaay too much today after being paralyzed yesterday! Dang, I am weak. Love this meme πŸ˜€

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