Wendy The Wanderer

Stories Of My Life

Lots of pent up anger

I woke up at 5 to take meds. I tried to go back to sleep, but couldn’t turn off my brain. I was PISSED!!!!!!!! I have been through so much crap!

All day I thought about how the incompetence of doctors has wasted months of my life πŸ˜’ Wow! I went from what felt like imminent death to getting better in leaps and bounds in a matter of days.

No pictures from Friday. I was in a bit of a daze much of the day. My long unused muscles were tired. I hurt all over. We went to a party store and looked at costumes. The kids got theirs. Then we briefly went shopping. I was on the verge of tears the whole time. The store’s scooter was wicked painful for me to sit in.

Then I had my shrink appointment. At check-in, I was treated TOTALLY different with a working voice. My counselor was surprised to hear my real voice 😊 I enjoyed being able to talk unrestrained. He said some of the docs I have seen deserve to have a lawsuit against them. He considers what they did and didn’t do to me to be malpractice.

When I got home, I spent an hour yakking with people in the lobby of my apartment building. The best gossip of the day was about The Stomper. I don’t know what she did to the guy last night, but apparently lots of cops were here. Today a moving van showed up and her stuff was taken away. Too bad that didn’t happen last year! The guy had finally admitted to people that she mistreated him. The end soon came. Yes!

Heather and the kids came back. Fletcher put on his costume and went to see the manager. Joe was great with him and kept telling Fletcher how fun his costume was. Then we went outside and Fletcher showed the people out there how to flap the wings of his costume. An old guy gave both kids candy. A woman put a dollar in Fletcher’s bucket. I was very touched by the dollar. It would never have occurred to me to do something like that!

Soon, we all looked like Zombies. The last few days had worn us out. Heather and the kids went back to their hotel. Soon after 6 PM, I was in bed. I had totally soaking night sweats ALL night long. Then I woke up with the worst killer thigh cramps in years. I had to get out of bed and try to walk. I tried the most loved home remedy…pickle juice! Soon, the cramps were gone. Whew!

I took my meds and am doing the usual of drying off and waiting for pain to ebb and sleepiness to come back.

I am very, very grateful to be getting strength and stamina back, along with my voice! I am going to need to be mad for awhile, then get back to “normalcy”. I have been to hell and back with my MG. I never want to go there again!!!!!!!

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Even BETTER day!

It didn’t start out that great. I woke up feeling very queasy and it was after 8 AM. Heather had already messaged me earlier. I did NOT want to get out of bed. But, since it was for Heather and the grandkids, I got up. I was also darn weak. Heather had the great idea of using a step stool to get me up into the VW Eurovan. DUH!!! Wish I had thought of that! She got my big platform folding step that I used to get in and out of my vans. I had it in my closet. Way easier!

My voice was broken up and then poof! I could talk! I talked all day long πŸ˜€ It does hurt my chest, but nothing like the breathy broken up speech did! A few times when I got weak from standing, my voice quit working. I could feel the weirdness in my throat. Then, very quickly, I could talk again!!!!

We drove to Antelope Island State Park. The only time I got up, was to use my walker to go in the visitor’s center and to walk a few feet out the back door. The kids took turns sitting on my walker seat.

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We drove down to the ranch. That side of the island had lots of bison. We also saw two pronghorn antelope. I am the only one who saw the coyote. I didn’t take pictures. They would look like dark specks on my phone.

I sat in the van while Heather and the kids hiked up a hill. Hard to tell, but this is leaving. Fletcher had to say bye and wave a few times πŸ˜€

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While they were gone, I looked around at the Great Salt Lake and read email. Then they came back!

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By then I was soooo sore from sitting, but it was worth it 😊 We came to my apartment and Fletcher finally got to draw glitter pictures. Porter mopped the floor. Yikes!

Heather made us a very yummy supper of Alaskan salmon, fresh squash from her garden, and some sticky rice. Know how Porter eats his sticky rice? He puts it on the fork, turns it upside down and shoves it in. Where is a dog when you need one? Clean up on aisle one!

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When they went to their hotel, Olive popped out and ate her portion of salmon that was in her kitty dish.

People in my apartment building are amazed that I can talk again. Wow! Me, too! Now that I know it was an infection all this time….like I told all the doctors, I am kinda miffed that so much of my summer was wasted being sick. Why won’t people listen to me!?!?!?!?!!!!!! I was given many lectures on how I need to be more forceful at sticking up for myself. Sigh…..

While looking at myself in the bathroom light, I looked much younger and perkier. By the time I sat in my comfy chair and took a selfie, I didn’t look as good as I had. One side is droopier than the other. But it’s an improvement!

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Best day in forever!

My daughter has been driving towards me for three days. Wednesday morning she made it to SLC πŸ˜€

Heather wanted to drive some more to keep Porter asleep. So I got in the car. We went up Big Cottonwood Canyon. What a gorgeous, blue sky day!

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We could only see a little bit of snow at the very top. We were at 8,700 feet. Oh, my gosh! At that elevation it was hard to breathe and hard to lift my feet up. We stopped at Silver Lake….the place where I got bit by mosquitoes and was infected with West Nile Virus. I assured Fletcher that the mosquitoes were gone for the season.

The restroom building had water drip off and freeze on the sidewalk. I picked up a chunk and threw it in the parking lot. They had a good time stomping on their ice chunks. By the time we left, they had harvested and destroyed much of the ice πŸ˜€

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Back down in the valley, we had dim sum for lunch. The boys liked the tanks of live seafood. While eating, all of the sudden, my voice worked! It lasted maybe 20 minutes. Holy smokes! That’s the first time that has happened since August! Heather and I used to joke when we were in Vermont, that Chinese food cured me. πŸ˜€ Unfortunately when I stood up, I instantly got weak and my voice took a hike. I have huge hopes that the antibiotics will make me better, thereby making the MG better, and then I will have my voice back. Dang…I sure hope so!!!!

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When we got to my apartment, both boys got excited about the two shelves of kid books. I have slowly but surely amassed the collection by going to Deseret Industries every few days to find good books. Here’s me and Porter. I wish my voice worked!

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Both boys were happy to see me. I am always amazed that they remember me and love me. When they left for their hotel, Porter gave me a monster hug. Each time he got a few feet away, he ran back to give me more hugs and kisses. Of course I think they are the cutest, most precious little boys in the whole world! ☺️

I was soooo tired! Went to bed early and slept like a log for six hours.

Hmmmmm……what adventures will we have today? I am very, very thankful for the antibiotics that made doing things possible. Yes! 😊

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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.

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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?

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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……

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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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