Wendy The Wanderer

Stories Of My Life

Another day of mix-ups

I didn’t sleep very long or very well last night. Too much pain and queasiness to go with difficulty breathing. The weather was odd, too!

It was raining early. By 10 AM, outside was warm and sunny, with a gentle breeze. I took out the garbage and recycling and tried to talk to a few people. Didn’t do me any good to sit home being quiet for 48 or so hours. My voice was awful.

Went to FNB. Slim pickings, but good stuff 😊 While I was at the park, the wind got cold and the clouds black. On the way home, I got hit by precipitation that looked like hail, but upon impact, they were mushy ice ball bombs that splattered on impact. Within seconds of coming through the front door, the clouds opened up and rain came down in sheets.

IMG_4926.JPG

The next several hours flew by. Luckily a woman with MG asked me some questions. I looked at the clock and realized it was way past time for my antibiotic delivery. I called the pharmacy. They never got a fax from my doctor! She could only understand some of my words, but she called my doc’s office, got the script and had it delivered to me. I took my first pill by 6 PM. Whew!

Then there was a knock at my door. A woman I barely know waltzed in and gave me a frozen chicken, a package of Boar’s Head bratwurst and a box of tomatoes. She said she worked at a food shelf today and they gave it to her, but she didn’t want it. Cool! :-)

Speaking of cool, Heather took this rainbow picture today. Nifty, huh?

IMG_4928.JPG

I don’t know if it’s coincidence or cause and effect. A couple of hours after downing the antibiotic, the intense left sided abdominal/pelvic pain started. There are a few other pains, too…my left temple and my left breast. What’s up with that half of me? Oh, I forgot. Yesterday is was the upper left arm spasming out. Huh.

I hope I can sleep tonight! Soooooo tired……

IMG_4913.JPG

Leave a comment »

How many times now?

IMG_4924.JPG

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.

2 Comments »

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 👼

Leave a comment »

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…

IMG_4911.JPG

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.

IMG_4908.JPG

IMG_4836.JPG

IMG_4857.JPG

1 Comment »

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 😀

IMG_4888.JPG

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

IMG_4889.JPG

IMG_4904.JPG

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 😀

IMG_4891.JPG

IMG_4892.JPG

IMG_4893.JPG

IMG_4894.JPG

IMG_4895.JPG

IMG_4896.JPG

IMG_4899.JPG

IMG_4902.JPG

3 Comments »

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 😞

Leave a comment »

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.

IMG_4882.JPG

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

3 Comments »

A new paradigm?

Hope you like that Heather 😀

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!

1 Comment »

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 😛 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.

IMG_4878.JPG

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.

IMG_4858.JPG

Leave a comment »

Olive has been watching YouTube videos

I woke up Wednesday morning to this.

IMG_4869.JPG

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

New pet trick from Olive. Sigh….

Leave a comment »

Follow

Get every new post delivered to your Inbox.

Join 200 other followers