Wendy The Wanderer

Stories Of My Life

I wonder if this will post?

Yesterday I was at the doctor’s office for more than 3 hours. It took exactly that long for the new operating system to download onto my phone on their wifi.

Last night it took a very long time and many tries to upload my blog post. Today nothing works well. The header of emails shows up, but the rest of it wont open for hours, if at all. I got a phone message last night that still won’t let me hear it. The Internet is almost useless. No pages will open. The FB app works at glacial speed, but at least sometimes lets me look at pictures. Most of my FB feed is national parks and different parts of the country that showcase beautiful pictures :-) I often hide my friends. Snicker. I repeatedly tell people I am not into most of the social scene. At one time there were over a hundred friend requests pending. I don’t know if they disappear over time or people uncheck the request, but there are only 50 waiting now. I am not a fan of the FB social scene and really don’t understand the appeal. Oooooops! FB rant snuck in there. 😜

That was cool! Just like last night, black clouds came along. A lone white seagull was flying around in front of the clouds, in stark contrast.

I went to the manager today and croaked out enough words to let him know what my doc said. He says if the time comes that I have to leave quickly, I won’t get in trouble for it. I feel better after the talk…my brain, not my body. It wears me out to say much.

I have noticed that most of the men I usually talk to are now spooked by my voice. I think it’s that men want to fix things. I sure feel broken! Grrrrr…..

I was lounging around in my robe when my neighbor knocked. She wanted me to go to FNB with her. I got dressed and off we went.

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You can see Olive was interested in the yogurt. I had an everything bagel with cream cheese for breakfast. It was really stale, but tasted pretty good after doing time in my Foreman grill.

I have been wrestling with what the internist said all day. Each time I start to feel one way, I argue with myself and flop back the other way. I very much appreciated the talks with my neighbor and the manager. It made it all more real.

I do think my doc was way too optimistic about things magically working out. I don’t like being homeless! I hope whatever happens can be done systematically and deliberately instead of in a rush. I am totally disgusted that politics have put me in this position. Today I learned that in TN and KY, if you are on Medicaid, you can only get 5 prescriptions a month. For people with a chronic or even an intense, acute illness, that’s putting their lives at risk. A woman with MG in one of my support groups ran out of her Mestinon before the month ran out. That can be a life or death thing! I still remember buying each pill by the day in AZ while I waited for authorization. What a nightmare. If that woman got sick from missing her meds, the hospitalization would be in the 10’s of thousands of dollars…all for the want of a few $3 pills. Stupid.

Wow! I just stood up and started talking to Olive. My voice works. No telling for how long, but I hope that proves my doc wrong on one count. He thought my voice was a problem in my cerebellum. I said it’s from MG weakness and lack of air. Both problems can cause the same dysarthria. I don’t need any NEW problems!!! MG weakness is bad enough.

Oh, booger brains! I started choking and now my voice is worse than ever. I am grateful that it can still come and go. It has been messing up for days on end with no break. I like the knowledge that all I need is strength and more air to get better. 😀 I wish I knew how to make that happen without IVIg.

Well, Wednesday is dermatologist day. Someone is finally going to look at the black spot on my leg! You would have thought the rheumatologist, ER doc or internist could have at least looked at it. Nope. Everything requires a specialist. I sure hope it’s nothing creepy.

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Utah is an alternate universe

I was looking up things my doc told me today and was busy being depressed. The sky to the northeast was very black. All of the sudden an apartment building in that direction lit up golden. I stood up to take a pic and WOW! There was a rainbow 😃 In moments, the rain came down so hard that buildings were obliterated.

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When it started raining, Olive wondered what was going on.

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I have so many conflicting feelings about today’s doctor visit that I don’t even know where to begin! I am not sure who to feel sorrier for….me or the doc!?

He told me I have scanning speech. The other name for that is ataxic dysarthria. We also talked about my nystagmus. He thought is was from my cerebellum. He wanted me to see a different neurologist, but that wouldn’t be covered by my insurance.

I knew it! He is being pressured by the insurance caseworkers to quit treating me for myasthenia gravis. I don’t begin to understand how any of this is legal, ethical or moral. He was upset that I am so sick, yet they keep hounding him. I cannot imagine what a dilemma that puts him in. He is supposed to be there for me, and they are trying to influence him via threats, to stop being my advocate. The guy was more distraught than ever.

He says I have two choices for treatment…either get so weak that they have to intubate me or move. He encouraged me to move ASAP. I told him I have no money and nowhere to go. He said I should not pay rent, get on a plane and take an ambulance to the hospital in Vermont 😳 He told me only to worry about that, and the caseworker at the Vermont hospital would help me find somewhere to live! Do you know how much that scares the crap out of me???? He said I need to make up my mind and go NOW!

He wants me to go back to my Vermont neurologist. He has read records from him and thinks he is a good guy. Both my internist and the Vermont neuro are from India.

I keep thinking of the what ifs. What if none of this works? What if I give up everything I own and then end up homeless in the snow with Olive? It’s only while writing this down that the enormity of my situation is hitting me 😞 Geeze, I know the internist wants what’s best for me medically…..but crap! I don’t think ANYONE has ever asked me to do something like this. It’s a crapshoot. I could die in Utah or risk it in Vermont. This is crazy.

I have to do some heavy duty praying. If you are so inclined, I would be grateful for your prayers. Thank you.

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Cool!

The sun came out for a few minutes :-) I decided to get dressed, check yesterday’s mail and do a lap around the parking lot in my chair. Figures, no mail. As I was getting back on the sidewalk, I was very startled to see the missionaries! I hadn’t seen them for a long time.

We sat outside and talked for awhile. I was already tired just from getting dressed and lifting my arm up for the mail. The stupid dysarthria frustrates the heck out of me!!!!!!! I want to talk and not have to give it a second thought. Not only is it physically hard to talk, my brain feels like mush.

Since I was already feeling sorry for myself and feeling bummed, I wasn’t much fun. The physical effort to sit up straight, think and talk started feeling overwhelming. I got both a nice card from them and a blessing :-)

Got back in my apartment and realized my ribs hurt BAD! That was the most talking I have done in a while. Who knew it took all that rib effort? It must be from trying to suck in enough air. Ouch. Geeze, my jaws hurt, too :-(

Olive went nuts when I opened the door. I am not sure if it’s because I was gone or because she knew we had talked about her :-) She insisted on sniffing me and the chair thoroughly, meowing at full blast the whole time.

Whenever I sit in my comfy chair, the neck pillow is around my neck. When I go to the bathroom, I put my arm on the grab bar and hold up my head. I miss my wheelchair head rest something fierce. When I am this weak, my head feels like it weighs a bazillion pounds. Just that short foray out makes my head and neck ache for hours.

There has GOT TO BE a way the headrest can be bolted back on! I miss hardware stores like my old favorite in Montpelier, VT. You could go in there with any sort of hardware problem, and they had a solution. The $210 wanted by the wheelchair company is utterly ridiculous. Grrrrrr…

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Now it’s evening. I was just looking up info about going into MG crisis. I had told the missionaries that if symptoms aren’t treated, people with MG can die of choking or breathing problems. I thought I should find some facts about that. Sounds familiar, huh :-(

What are the signs and symptoms of a myasthenic crisis?

Your myasthenia gravis symptoms worsen during a myasthenic crisis. You may also have any of the following:

Difficulty breathing or speaking

The skin between your ribs, around your neck, or on your abdomen pulls in when you breathe

Morning headaches, or feeling tired during the daytime

Waking up frequently at night or feeling like you are not sleeping well

Weak cough with increased secretions (mucus or saliva) or an inability to clear secretions

Weak tongue, trouble swallowing or chewing, and weight loss

http://www.drugs.com/cg/myasthenic-crisis.html

I was looking for a picture about MG smiles so you can understand why my smiles don’t look smiley. I found this poster and interesting blog post from the UK. The comments made my night in a weird sort of way :-p MG is so rare, that us folks who have it tend to forget that the average person (and doctor!) knows very little or nothing about it.

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http://www.civilsociety.co.uk/fundraising/blogs/content/6749/blog_is_this_the_oddest_charity_poster_you_have_ever_seen#.VCjR9Nm9LCQ

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I am having a hard time “hanging in there”

I woke up with my head swollen and in pain.

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Then I took my meds and started choking. Oh, my gosh! The choking made my stomach feel like it raised up and wanted to come out my mouth. I don’t mean the contents, I mean the WHOLE thing! I don’t think I have ever felt that sensation before :-o And it keeps happening. I have coughed out lots of spit. I feel sooooo sick!

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It’s raining hard again. The mold is awful today. I can taste it. My head is congested. My eyes are blurry and teary.

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Even though I look like heck, it doesn’t even begin to convey how horrible I feel. I don’t even know how to describe it.

Since then, I have made several videos of my tongue and face fasciculations. I have a new sensation. There are fasciculations in my chest that are affecting my breathing. It doesn’t look all that different from other pics, but it sure FEELS worse! My eyelids are drooping more and more. I don’t think it takes much droop to make a significant change in how much light I see!

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Pictures and videos don’t really show how much I hurt or feel sick or am struggling to breathe. It’s just a glimpse at what’s going on. Ever since I woke up, my head has been swimming in fog and dizziness. This all makes the regular dashes to the bathroom, ummm uhhhh, challenging.

If it was in my power, I would make the administrators who keep denying my IVIg, take over my afflictions for a week. And the only way they can escape it is to give appropriate medical care….for me AND them :-)

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The convergence

We have been having almost non-stop rain. Looks pretty cool on weather radar. They call it a train. The band of rain has been coming from the south in a straight path up the state. The desert is flooded. It’s also “cold”. Just a couple of days ago we had 91 degrees. At 5:20 PM, it’s 54 degrees. Rather abrupt. We aren’t used to this.

I haven’t been to FNB in a long time….and I don’t much care. I am not very hungry. When I do eat, I am always sorry as it causes weakness and gut distress. My tongue gets instantly fatigued from eating and goes into fasciculations.

I have had a fever for more than a month now. My belly hurts bad :-( Then I have night sweats. Yuck.

The weakness all day also happens all night. I drool like crazy. It’s an MG thing. When I roll over in bed, my arm and leg muscles quiver and buzz. When I stand up, the weakness and quivering is made even more fun by extreme shortness of breath. The bathroom scares me. I am afraid of slipping and falling.

When I get to my comfy chair, I am queasy. That is intensified from my vision hopping all over the place. I don’t think I am ever going to get used to seeing the salt lamps violently jumping up and down, back and forth.

The blurry and double vision is a PITA. I see two pigeons, two beer bottles in the parking lot, two moons in the sky. I suppose some of my headaches are from trying to see straight. I struggle to read or watch TV. It’s tough to decipher words and images out of the blur.

My eyelids droop, my voice is barely decipherable and I keep choking on my own spit. In every other state, I was given IVIg and got better. The hospital/insurance system is going to great lengths to keep me from getting it here. There’s a new excuse for every occasion.

Today the convergence of bad weather, bad pain, bad TV, bad internet connection and bad feelings has put me in a funk. And…it’s LDS Woman’s Conference. I can’t go and don’t have the ability to watch online. I feel disconnected from the world and left to sit here feeling miserable. Yup. Feeling sorry for myself. I have three doc appointments next week. What good does it do to have docs who want to treat me if insurance says no?!?!?! It all seems so futile on a day like today :-(

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That got my adrenaline pumping!

Around 7:30 PM, the sky got very dark. Lightning just struck somewhere around downtown Salt Lake City. The thunder was simultaneous with the lightning. It made the power go out. Olive was sitting close to the open window. Rain started coming down at the same instant as the thunder and lightning. In a few seconds, Olive got all wet.

I wonder if lightning hit the light poles next door? There are no lights on over there in or on the parking garage, even though the power came back on here. An hour later and still no lights. The brightness near the tree is the top of a big building downtown.

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I have had two different people come knock on my door today. My neighbor have me 2 shirts. One I can wear as-is. The other will be good as an under layer in winter. I had a heck of a time talking to her. I broke out in a very hot sweat and got an intense headache from effort. Later, it was a guy in a wheelchair asking for two rolls of toilet paper. I wanted to say no, but I didn’t. I know he lives on a lot more money than I do. Sigh…. He has “borrowed” stuff in the past. Next time the answer will be no, unless he does something to balance the relationship between now and then. It was soooooo hard trying to say anything.

Yesterday I made a video of me talking. Heather says she has never heard me sound like that before. I didn’t think so. It really takes almost everything out of me to talk for a few seconds.

About 9:15 I could smell burned wires. I looked up and all the lights were on next door. I can still smell burning at 10 PM. It hurts my throat.

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Lots of excitement next door

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It’s hard to see in these little pictures, but dozens of people streamed out of the DWS building and are now standing at my apartment. The alarm kept going a looooooooong time! No fire truck showed up. Gee, did all the new lights cause an electrical problem? Where are the cops? The firemen? Every once in a while, the alarm comes on again.

The workers are not used to being outside. Most are wiping sweat away. Many gave up and sat down on the grass or a curb.

Hmmmmm…a fire truck went by, then everybody went in. It must have been parked on the other side of the building. People were outside more than half an hour.

See…..I don’t need to go anywhere. There is plenty of excitement right out my window.

This is what we look like inside the apartment.

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Now I live in a baseball stadium

They were back today, working on the new lights.

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I was sitting here with the blinds closed when light pierced my eyes. Whoa!

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Now I can see the cars better at night than I could in the day :-o

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They are tired of druggies, too

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The DWS parking garage is putting up light poles. There’s one almost behind the tree and the one the guy is working on. When I went and told the security guard there about the creepiness I have seen going on there, he told me a few of his own stories.

I am glad to see they are finally doing something about it! I do hope those lights won’t be shining in my apartment at night. When druggies are rousted from one spot, they just find new ones. Hopefully the management here will continue rousting creeptoids from in front of my windows until the idiots give up and find a new spot. It’s very sad that a few people doing bad stuff wrecks everyone’s sense of peace and safety :-(

I had a rough night. I would sleep a while, then have to sit in my comfy chair. I didn’t get up for good until 1:30 in the afternoon. My head and guts are vying for owiest body part. Still feverish.

Around 6 I got dressed so I could check the mail. Then I went over to DI. My collection of kid books is getting pretty big. I also found a really nice wooden toy that Heather will probably “accidentally” lose :-p Olive is fascinated with it :-)

While coming back to my apartment, I discovered the new anti-druggie landscaping. The bushes have been severely cut back to keep the creepers out.

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The brick wall is 7-11. The green grass through the fence is where people were sitting to sell Spice. I am glad the greenery has been trimmed. Lots of druggies have been hanging out on our side of the fence :-(

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Wow! It’s getting dark now. The inside of the parking garage is all lit up! I guess DWS is truly getting serious about scaring off the riff raff.

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I am wondering if the top lights are hooked up yet. The guy was still working on them after 5. It will be interesting to see if they automatically come on or are motion activated.

I only caught part of the evening news. There were several cop chases within blocks of here :-o The Zombie Apocalypse is coming.

After the office was closed and the maintenance man had gone home, look what I found wide open! The control panels to the apartment complex. Just great. If the Zombies wanted to hurt us, they have the means. I am not impressed by security in here :-(

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This article about what doctors think about chronically ill patients was posted today. Good timing. I have been thinking a lot about doctors. My last ER visit certainly scared me. Docs have the power to help me get better and the power to royally screw up my life.

http://www.igliving.com/Assets/IGL/Articles/IGL_2013-08_AR_A-Letter-to-Patients-with-Chronic-Disease.pdf

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What are the typical symptoms of voice dysfunction in patients with MG?

The typical symptoms of myasthenia gravis involve the eyes, specifically double vision and drooping eyelids. The symptoms usually arise after repetitive tasks (due to muscle fatigue) and improve with short periods of rest.
Voice and speech-related symptoms include:
Hoarseness
Vocal fatigue
Difficulty with controlling the pitch of the voice
Hypernasal voice
Mildly slurred speech
Monotone voice
Swallowing difficulty
Weakness of the jaw muscles

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Today my voice was so bad that the woman who does my laundry couldn’t understand me. My voice continues to deteriorate daily. The people who used to be able to figure me out, can’t now. When I talk even a little, I can barely breathe. When I see my internist next week, I hope he has some new ideas!

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Everything I do pisses off somebody

Maybe that’s why people conform. It’s easier to be anonymous in a herd than be a zebra among horses.

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When it comes to the big three of politics, religion and money, no matter what a person believes, there are people who believe the opposite.

Now that it’s political season, there’s a whole lot I don’t agree with being said. I just watched a political ad that gave no facts and played on hatred to get people to vote for the candidate. I want to know what they are FOR, being against things is easy.

There are times in my life when I find myself not part of the majority…like most of the time! I loved being a homesteader, organic farmer, unschooler, camping traveler, etc. now that I find myself in a city, in a senior apartment, sick all the time, unable to drive or garden, I haven’t found my niche yet.

Monday night I crawled in bed when the chills hit. When I woke up, I was drenched in night sweats. I had almost no energy all day. I wasn’t able to talk all day, either. I didn’t go to FNB. My head hurt way more than my guts for a change. Ouch.

Monday I got desperate to stop the yellow goo from oozing out of my belly wound. I was very, very brave. I slathered the wound in Tea Tree Therapy antiseptic solution. I usually use that on sweat induced sores. It makes me scream, but then I am almost instantly better. I was AMAZED. I really don’t feel regular pain there! I didn’t feel a thing :-) And Tuesday the wound looks a million times better. YES!!! I love tea tree and lavender!!!!!!

Tuesday night was similar to the night before. I got into bed when the chills started. I woke up less than 4 hours later and couldn’t fall back asleep. Too much pain and too queasy. Ick. I am not much fun. Days are a blur that are blending together.

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