Wendy The Wanderer

Stories Of My Life

Wow! Feeling bad

Yesterday I was weaker, but figured it would pass. Getting dressed and in my wheelchair to go shopping made me incredibly weak and out of breath.

I felt cruddy in the evening, but thought sleep would help. Sleep has been elusive. After 3 hours, I woke up. Took my meds and sat up for 2 hours. My hands were twitchy and eyes blurry when I went back to bed. I rolled around in agony for an hour and got up again.

Whoa! My thighs and upper arms are back to buzzing and quivering and my muscles just barely hold me up. My eyes and face are twitching. My tongue is having fasiculations. My chest hurts when I breathe. What the heck happened?!?!?!

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Feeling better this evening

I just got home from a foray out to buy groceries. Heather fried up the last onion days ago. This morning I ate the last two eggs. It was crisis time! Snicker….

I spent a couple of hours awake in the wee hours of the morning to take meds. About half an hour later, my throat was full of bubbles and a mostly melted Prilosec capsule bubbled right up. Gross, but kinda fascinating. My gastroparesis is getting worse. My stomach and intestines are not amused :-( They feel paralyzed.

When I came in the door from shopping, a contingent of gossips wanted to know how my voice got better. They were very skeptical that antibiotics could make my muscles stronger. Sigh…it’s classic myasthenia gravis. I realize that sounds weird if you don’t understand MG.

I went back to bed early this morning and slept until 11:30. My guts hurt a lot. I slept right through FNB. From noon to four, I was bent over and queasy. There was no comfortable position. Then I decided to go grocery shopping. I wore my Ugg boots and purple long underwear for the first time this season. It was the second or third time for my coat and gloves. Our high today was 56. Snow might happen next weekend.

Every day something different hurts and something else gets better. I really, really appreciate being able to talk again!!! πŸ˜€

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West Nile Virus really sucks!

Only God knows where my myasthenia gravis ends and the WNV takes over.

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This woman was written up about her WNV experience.

http://www.argusleader.com/story/opinion/columnists/2014/10/25/harriman-west-nile-trial/17888289/?post_id=%5B%27686284455_10152836837039456%27%5D

Then….she had a spill in her wheelchair yesterday and broke both her legs and an ankle. She was in surgery today. Please pray for Gloria.

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Improvement is not a straight line

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I enjoy Heather’s sarcasm πŸ˜€ She points out silly things I do….like get surprised when I choke and get weak from being late to take Mestinon. Yes, it IS always new to me 😜

I napped about four hours Sunday. Woke up with sore, raw lungs. I am worried that the antibiotic started to work, but that the infection is winning. I hope I am wrong. Maybe resting and plenty of sleep will help?

Olive hated her salmon and sweet potato cat food. But gosh, she loves real Alaskan salmon! I heated up salmon, leftover squash and some polenta chunks for my dinner. Olive jumped right up to my plate and tried to snag the fish! I gave her quite a bit as I ate…otherwise she would have stolen it! I have never seen her be so bold.

All day today I have been feeling the creepy numbness that I get in my tongue and face just before fasciculations start. I don’t like it! I am also still sleepy, despite the nap.

When I went to bed, I thought “I need to take a Mestinon and Motrin around 1:30 AM”. After I had been asleep 3 hours, Olive woke me up by stomping across my bladder several times while meowing very loud and poking her face into mine. I got up for self protection. It was exactly 1:30. She kept being obnoxious until I took my pills.

This has happened a bunch of times now. Does the cat tell time…or does something change in my breathing? Do I writhe around? What??? Interesting, huh? More and more Olive proves herself to be a “service cat”. Whenever I am in distress, she meows loud and long. Must be a Heather clone πŸ˜„

Now that the meds are safely in me, Olive is busy looking out the window. My lungs still feel sore and raw. When it’s hurting the most, my heart beats funny.

At 7:30 this morning, Olive woke me up again so I would take my meds! What’s going on here? She is better than a timer.

I went over to Deseret Industries and found some great kid books to start a whole new collection for when the grandkids visit again. I was a victim of sneaky weather. The forecast called for 0% chance of rain and sunny skies. As I sat in my chair, I watched the mountains get swallowed up by clouds, and the rain came down. Around 10, the sun came out. I took out the garbage and the clouds turned dark. I started for DI and wham!!! Oh, hail! The bouncy ice balls were raining down. I scooted under the apartment’s metal patio cover. Noisy! Then I pulled up my hood and sped over. I spent a looooooong time reading books, so the weather was calmer when I came home.

By then I was hungry. I had a box of Balinese noodles from a previous FNB, plus a broccoli and a red and a yellow pepper from FNB. I had a package of tempeh in the fridge. Made a real yummy stir fry. That’s when I realized I had done all that standing to cook! Holy moly! I haven’t been this strong in many months! All of these antibiotic pills and hours of sleeping are working πŸ˜€ YES!!!!!

I still feel kinda yucky, so it’s amazing that my body is busy healing and getting stronger! πŸ˜„

But….that brings me back to being REALLY MAD that I wasn’t correctly treated for MG and infection all these months. Dang it! I hope this is a lesson for me and my docs. I hope none of us forget.

We are supposed to have our first freeze in SLC tonight. Heather got out of here just in time. On the other side of the mountains, in Park City, they are already making snow. This might be the first night that I close my bedroom window. The maintenance man brought me window locks so I can stay safe.

It has taken me more than a whole day to write this much. I have the attention span of a gnat. Sigh…..

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The bitter and the sweet

I slept more than 8 hours, but I sure didn’t wake up rested. Heather says I slept right through a wind storm.

On the best of days, taking a shower is like running a marathon. I needed to do several things before I could even shower, then I had a few things to move around afterwards. That turned my muscles into a twitching, spasming mess. Tongue and face fasciculations that went down my throat, plus overall weakness. I had been sitting there feeling icky for quite awhile when Heather drove up. She came bearing pastries πŸ˜€ I again had a hard time swallowing, my voice got broken up and my eye closed. My eyes are still blurry, double and twitchy.

I hope the antibiotics are vanquishing the infection. I woke up 5 hours after I had first fallen asleep. My bed and pillow were soaked from night sweats. I had obviously been having sweats for hours. I really hate putting cold, wet CPAP gear back on my head and crawling into a very cold, very damp bed. YUCK!

Back to the sweet! I had a ham and cheese croissant and a beignet for breakfast. We searched all over for hidden toys and art projects. Heather packed up all the kid books and snacks. Soon it was time for them to go 😟

Both kids rode out on my wheelchair. Porter enjoyed sitting in my recycling bucket while his mom cleaned out the van.

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I don’t know how Heather lives through 24/7 of two boys. Sooooo much to do on so little rest!

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After the last hugs, kisses and waves, off they went towards home and dad. I cried. Then I dried my tears, came inside and joked around with people for half an hour.

When I saw my face in the mirror, I was surprised by the bags under my eyes. Yup, tired and weak. I want to be all better!!!!!!! Hopefully I will keep getting better with continued antibiotics and rest. It was a bit much to go straight from being incredibly sick to doing so much….but how could I NOT??? It was fantastic to get my voice back and to see my loved ones 😊

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Mmmmm…just had the lunch that Heather brought to me this morning. πŸ˜€ She got a square little quiche in very flaky crust at her favorite SLC bakery.

Yesterday the Salt Lake valley broke temperature records. NOAA says it was 79. Other places claimed we were in the 80’s. That great wind last night brought in a cold front. Today is cloudy, cool and breezy. At midnight it was 67. It fell to 52 around noon. This kind of weather makes me hurt all over. Ouch!

I think I am about to fall asleep whether I sit up or lie down. Zzzzzzzzzzzz………..

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Slower paced day

I slept from 6 PM to 8 AM, minus a couple of hours in the middle. I was still tired all day.

Heather and kids are staying in a place near the farmers market. I met them in Pioneer Park for the last farmers market of the season. I had a Somali pakora…only they spelled it different. A good deal for $1.50 😊

Fletcher and Porter enjoyed the playground. I thought it was hilarious when a little girl with a bug antenna hair band and a green tutu met Fletcher with a gemstone pink tiara, pink tutu and pink beads. The mothers had their respective green and pink wings. πŸ˜€ They flirted and looked each other over. There were lots of dogs in various costumes. One dog had a red tutu.

Besides the playground, the pumpkin decorating tent was also a big hit.

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I managed to leave my keys at home AGAIN! I keep Mestinon and Motrin in an air tight bottle on my key chain. When I took the first bite of the pakora, I choked and couldn’t swallow. Then my left eye drooped. Heather gave me a lecture about taking my meds on time 😜 She gave me her key with strict instructions to go back to my apartment and take meds. I started to, but found people pressing fresh cider. Fletcher had wanted some. I bought a cup, drank half, and zoomed back to give him the rest.

I got home and made a grilled ham and cheese on ciabatta. I dutifully took my meds.

A while later, the rest of the crew came here. Heather did my laundry. Fletcher and I made and flew paper airplanes. The kids colored and glued things on paper. Porter has a fascination with the swivel mop, broom, dustpan and sponge mop. He spent much of his time “cleaning”. I sat with my feet up!

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Tonight I made myself chicken noodle soup with ramen noodles and canned chicken. Sooooo tired! I went through chills/fever again tonight. Sigh…will it ever stop????

Heather just sent a couple of pics of me earlier this week at Antelope Island. In one my eyes are NOT drooped and you can tell I am sort of smiling :-)

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Porter loves climbing on my walker and going for a spin.

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I know I should go to bed, but when they all leave on Sunday, I can sleep and rest a few days! It’s so quiet and peaceful right now.

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Grandmas are definitely meant to borrow grandkids for awhile….then give them back! So cute, so full of life and light and love, and so exhausting! πŸ˜ƒ

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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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