Wendy The Wanderer

Stories Of My Life

Boring life

I put up a link the other day about Google keeping track of where people go via cellphone. I learned a new one just now. Apple keeps track of where I have been and for how long.

Settings > Privacy > Location Services > System Services > Frequent Locations

In 2 months, I have gone to Deseret Industries 11 times, the nearby doc 2 times, the farmer’s market once for 40 minutes, Liberty Park once for 1/2 hour, Temple Square 40 minutes, the health clinic for 2 hours and the hospital for 3 hours. That’s IT! Kinda creepy, kinda cool.

I slept a long time. Woke up feeling better and within about 5 minutes, I was back to weak, shaky, SOB and all that. I pulled a precooked artichoke out of the fridge for lunch. Bending gave me the shakes like never before :-o I had to stand up, holding on to the top of the fridge while gasping and quaking for what seemed like forever. Pretty cold with me practically in the fridge!

After eating my artichoke, my heart was trying to pound out of my chest. I checked my blood sugar and it was 256! From an artichoke!

It’s a good thing that I write on a cell phone. With my left hand, I rest it on my belly. I keep my right elbow tight to my body, rest my right forearm on my belly and switch it up between using my index finger or thumb to type. That’s the only reason I CAN type. With a keyboard I would be all over the place when I get these tremors and shakes.

When I feel so sick and quivery and am struggling so hard to breathe, I am desperate for distraction. I love being able to get online to read support groups, check out LDS stuff, read about science, look at pics and keep up with the news. Love my iPhone! Thank you, Heather :-) The part I hate is when my speed is throttled, like right now. It is sooooooooooo slow! But, it sure as heck is better than nothing ;-)

This new flare up is scary. I am running out of options to deal with the weakness and breathing difficulties. As far as I know, the only treatment is IVIg. Some folks with MG and/or lupus get plasmapheresis. No doc has ever seriously tried to get me to try it. I don’t know why, but plasmapheresis has always scared me. Since it is also expensive, my chances of getting that in Utah are also probably pretty slim.

No public transportation tomorrow. SLC is just weird when it comes to getting around. I hope I don’t need to go to a hospital.

I torture myself by reading a bunch of RV blogs and keep up with lots of outdoorsy news feeds. All the gorgeous pictures this weekend are sure making me miss my former life as a woodsy homesteader and camping maniac. Sigh…..

Anybody watching the MDA Marathon? I used to be happy to know I was “one of Jerry’s kids”. Myasthenia gravis is under the umbrella of the Muscular Dystrophy Association. It was thanks to an MDA clinic doctor that I got my first, and most of my subsequent IVIgs. Figures the MDA in Utah sucks. The idiot neuro who has been the bane of my existence here is on the board :-( It made me sad to see the marathon on TV and realize even that support has been withheld from me in this state. They were good to me in NY, VT and FL, though :-) In AZ I wasn’t able to access an MDA clinic because they didn’t take Arizona’s version of a Medicaid. In Vermont, the first MDA clinic visit was free if you didn’t have insurance. Sometimes it really is hard to believe we live in the UNITED states!

Just before 10 PM, I took the garbage out. Four of us converged at the door with our garbage at the exact same time :-p As usual, seeing the hookers and druggies coming and going from my apartment building was eye-opening :-o Three of us sat near the door in the wonderful 66 degree night air and watched the action. Eventually we all got scared and went in.

I am frustrated with my body. Maybe I should be happy to be experiencing all the quivery tremors and muscle spasms. It means I am still alive! :-)

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Still heading for myasthenic crisis

Oh, no! Despite the prednisone, my muscles are giving out :-o Now I can’t ambulate without my walker. I can barely get up from sitting. I am extremely short of breath. I am soooooo dizzy and spacey! It’s happening all over again and it’s happening FAST!

If I get to the point of needing hospitalization, I am taking my IVIg prescription and going to a different hospital. This sucks :-(

Hopefully I can chill out and regain some strength. Maybe this will pass??? Arggghhhhh!!!!!!!!

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But how do I feel?

I was really hoping that I could take advantage of this prednisone high. I had grand visions of going somewhere by TRAX or FrontRunner. See something new. Explore. Have fun.

I haven’t vacuumed the floor. I haven’t gone grocery shopping in more than a week. I turned down a chance to get into Tacy Aviary for free. The only new things I have done are rearrange books and breathe.

When I went to FNB on Saturday, I felt really sick while there. Any energy I have is fake. My muscles still quiver and buzz. I still have fasciculations. The dysarthria pops out whenever it feels like it. The big difference is the bad stuff doesn’t totally put me out of commission. I LOVE being able to function better :-) But…I sure don’t feel well. I feel all wound up!

My Vermont doc said for every year on prednisone, I age five. That’s what I feel…an acceleration. At first it was better than not being able to breathe. It was great not to choke :-) I LOVE being able to stand up! The flip side is that I can feel the cost. The speedy hyperness starts to feel like a new kind of torture. I feel possessed by weird energy vibes. It sure isn’t natural. Kind of like a deal with the devil. Sigh….

Yup, I miss IVIg. Prednisone is just camouflage. Pretty wallpaper hastily pasted over a zillion imperfections. It’s not fooling me. I know what’s underneath and soon the imperfections will be visible again. Dang. It was an illusion that would be nice to sustain.

My favorite old guy had to get whisked off to the VA hospital yesterday. I hear it was a spike in blood pressure, but he is doing better. Another woman got a bloody nose that wouldn’t stop, so she had to go to the ER. A whole bunch of people are sick with something. It’s nice not to be at the bottom of the health heap for a change. I feel bad for all the folks who are there!

I still spend most of my time in my comfy chair. I’m just not as tortured as before :-) I am spoiled. Now that I have a taste of improvement, I want to be BETTER! Right now!!!!!! Yes, I am greedy.

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Oh, oh. I woke up early on Sunday with really bad tremors. I wasn’t expecting this! I am not sure if I feel sick from the tremors or if I am sick, so tremors came along. I haven’t had this sort of tremor since WNV was kicking my butt.

And…my joints! Some of them swelled up huge overnight :-( I guess my low level uneasiness last night was a precursor to something going on today. My head hurts so bad that it’s hard to see well. I feel the stupid ice pick pains in my eyeballs.

I am one giant quiver and tremor that is super queasy :-( Now what???? Sigh…..

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August food

Thank goodness for FNB in the park! I don’t know what I would do without their help. Today the line was HUGE :-o Luckily I was near the winning end for the coin toss. Here’s what I got for going through twice.

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Now that I can think a little better thanks to prednisone, I was trying to figure out why I am struggling so much financially. How the heck did I afford to eat low carb in the Adirondacks? I started poking around for more info. In 2009, I was getting $761/month disability. In 2014 I get $721/month. In 2009, my rent was $124/month plus utilities. I also got money from the HEAT program that paid most of the utilities because I kept the place cold all winter. In 2014 my rent is $515/month. In 2009 I got $185/month food stamps. Now I get $98/month food stamps.

Ummmmmmm…..wow!!!!!!!! I didn’t remember that. NY State is much more generous to disabled people than Utah is. Some states add money to the federal disability amount and have way more generous food stamp guidelines. Then, take into account how much the cost of food has gone up from 2009 to 2014! NO WONDER I am having such a hard time!

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2009 income $946/month (disability and food stamps)
2009 rent $124/month
2009 money to spend on needed and wanted stuff $822 (Food, meds, pet food, haircuts, clothes, healthcare co-pays, phone, laundry, tp, tithing, etc, etc)

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2014 income $819/month (disability and food stamps)
2014 rent $515/month
2014 money to spend on needed and wanted stuff $304/month (Food, meds, pet food, haircuts, clothes, healthcare co-pays, phone, laundry, tp, tithing, etc, etc)

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I had $518/month more to spend in NY than Utah. In today’s food dollars, that would be a heck of a lot more! Not feeling a whole lot of warm, fuzzy feelings about living in this very Christian place :-( Ohhh! And let’s not forget that Utah charges tax on food. NY doesn’t.

As usual, when I dwell on finances, I feel sick to my stomach :-(

Here’s what I had for lunch thanks to FNB :-)

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This month I spent $106.80 on food. Good thing I was so queasy and couldn’t swallow. It was easier to get by on a small amount.

For supper I had the heirloom tomato with mayo on 2 pieces of toast :-)

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Hypocrites

I love the way the Republicans are afraid people will “depend on the government”. WE are the reason politicians and government exist. I was going to say they depend on us for their pay and healthcare, but the sweet deals thanks to lobbyists and corporations probably trumps it all. You know…all that by the people, for the people stuff? You would think these Republican politicians think they can get theirs because they have great worth…but the poorer among us are just not worthy at all. Oh, yeah, that’s pretty much the party platform, duh.

http://m.kuer.org/?utm_referrer=https%3A%2F%2Fm.facebook.com#mobile/51354

Even the people “on our side” in Utah consider low income folks ” the least of us”!

Some conservative lawmakers are still resisting an expansion of Medicaid in Utah, despite testimony from those who can’t afford health coverage and a new analysis showing the economic benefits of the governor’s Healthy Utah proposal.

Charlotte Lawrence tried to contain her emotion as she sat before the state’s health reform task force, with her children on either side. She explained that she is a single parent, working two full time jobs, and she has been diagnosed with cancer. She says she’s done all she can to provide for herself and her family, but it’s not enough.

“I have done everything,” Lawrence says. “I recently just went bankrupt on $196,000 in medical debt. Do you think a doctor even wants to see me now? When they offered me chemo because my margins came back unclear, I said how much does that cost? And when they told me what chemo and radiation was, I said, I can’t afford it.”

Republican Senator Allen Christensen from North Ogden is chair of the state task force. He says he feels for Lawrence and others like her, but he still does not believe expanding the role of government in healthcare is the answer.

“Where do I draw the line?” Christensen asks. “Do you want government to step in and take over her healthcare and be making those choices? Do you want the government to be everything to everyone?“

Brigham Young University Economics Professor Sven Wilson provided lawmakers with an independent analysis of the governor’s Healthy Utah proposal. The governor wants to use Medicaid dollars to allow Utahns to buy insurance on the private market. Dr. Wilson concluded that the economic benefits far outweigh the costs, but he felt there were even more important benefits to consider that are harder to quantify.

“The crucial question here is not whether we can afford this plan or whether the financial risks are manageable or not,” Wilson said. “The question is whether those lives matter. The question is whether our democracy feels a moral obligation to provide a minimal safety net for those who are the least among us.”

Governor Gary Herbert says he is still negotiating with the federal government. The one sticking point that remains is whether the state can include work requirements for health coverage. He expects to wrap up negotiations in the next month, but even if he succeeds there, the question remains, will he have the support of his fellow state lawmakers?

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I thought I had some idiot doctors!

I keep trying to explain the political climate in Utah. I would have thought people were exaggerating until I got here. The fact that this guy is LDS just blows my mind. Living here has been a humongous test of my faith!!!

This is a cheeky, but right-on description of how perverted Republicans are. One of the only Republicans I ever voted for was Jim Jeffords. He represented Vermont in Congress. He got so disgusted with Republican stupidity that he quit the party. He went on to serve a few more years. He just recently died. I am proud of him for having morals and values above political aspirations :-) I am embarassed to breathe the same air as this Utah doctor, legislator and lawyer :-(

People of Utah, did you know you are under threat by monstrous hazards that lurk behind gleaming facades, endangering your very life under the diabolical ruse of helping you avoid death? There could even be one of these hulking terrors right in your own neighborhood. Fortunately, there is a kindly doctorman fighting to protect you from these deathtraps, these hospitals, by making sure you don’t have access to them. That man is Dr. Mike, J.D., also known as state Rep. Michael S. Kennedy of Utah’s 27th House District.

During a meeting of the Health Reform Task Force (which, luckily for all of Utah, Dr. Mike is there to steer in the right direction), a visiting doctor recounted a story of a man who had an extremely rare but serious reaction to pain medication while being treated for injuries from a car accident. Dr. Mike, who we reiterate is a practicing medical doctor himself, took this as rock-solid evidence to support his assertion that it is access to hospitals that is killing people, and the best thing for patients to do is just stay out of these places altogether (and, presumably, let Dr. Mike come to your house instead).

Sometimes access to health care can actually be damaging and dangerous, and it’s a perspective for the [legislative] body to consider is that I’ve heard from National Institutes of Health and otherwise we’re killing up to a million, a million and a half people every year in our hospitals and it’s access to hospitals that’s killing those people.

So who is this hero standing between an unsuspecting public and the scourge of doctors and their death chambers? According to his campaign video, Mike Kennedy was thrown into poverty by his parents’ divorce when he was seven years old, but learned that “sound fiscal management” can save you from “debt and bondage,” so, silver lining? Also, cute kids are not afraid to let him use a stethoscope on them.

Read more at Wonkette: http://wonkette.com/558705/rep-dr-mike-kennedy-esq-will-protect-utah-from-dangerous-hospitals#ixzz3Bu50e3oL

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Oh pfffffftttttt!

I am already on the downhill side. I am getting weaker and the dysarthria comes and goes. Gee, overdoing it couldn’t possibly be the cause! Snicker….

My big expedition today was to go half a block. I went over to DI and bought a few kid books. I love 50 cent almost new books :-)

At DI I met a disabled couple. They turned out to be quite interesting. They used to be regular old Catholics and switched to Antiochian Orthodox. I liked their passion :-)

Next weekend is an apartment-wide yard sale to benefit the useless tenant association. I wasn’t going to donate because I don’t go to bingo or movie nights. Then I realized I could weed out my least favorite cookbooks and put them in the sale. I was going to put them on the free table, anyway. And next time there’s a BBQ and they want a donation for it, I will say I gave to the sale. The bingo and movie goers get free popcorn, soda, snacks and prizes twice a week. That’s how all the fundraising $$ goes down the drain. Ooooooohhhhhh….I am enjoying being a prednisone bitch a little too much :-p

Oh, this is priceless. A Republican doctor doesn’t want to expand Utah Medicaid coverage because access to health care can be dangerous. Yup…dangerous to his paycheck :-p I think he should volunteer that he and all of his extended family should stop getting health care RIGHT NOW. I can just see him sputtering. What a moron. Silly rabbit…health care isn’t dangerous for rich people with excellent insurance! Next time he’s in a car crash…leave him in the car :-p

http://fox13now.com/2014/08/28/state-representative-to-legislature-hospitals-can-be-dangerous/

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In a sudden burst of enthusiasm, I took about a third of the books out of the bookcases and sorted them by subject. Soon I was bright red and burning up. I sat down to rest. My heart had a bunch of arrhythmias. I thought I was going to kick the bucket :-o My heart went both fast and slow, it quivered, it felt spongey and it skipped beats. Dang. After I rested a good bit, I took out the garbage and recycling and looked for my nonexistent mail. I went as fast as my wheelchair would take me, down the length of the parking lot to catch a breeze. Good thing I closed the window and turned on the A/C before going out! It was a little cooler when I came back in.

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This is only a small book explosion. I wish I had taken a pic when the entire couch, ottoman, floor, walker and window shelf were covered in books! The fact that I did this much is AMAZING :-) Ever since I moved to this apartment, I was too weak to bend over and take a few books off the shelf to look at. It was good to get reacquainted with my books.

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I picked out enough books for the sale to fill 4 bags. That felt good :-) Now I have more room for books I truly treasure. Getting rid of unwanted things is always fun for me. Next…all the clothes that don’t fit me. They are a heavy psychic burden.

My blood sugar is way too high…206. I shot up more than 60 units of Lantus today. I took 60mg of prednisone. Tomorrow needs more Lantus. By the time I figure out what I need, I will be down to 40mg prednisone. I wish the doc would have let me shoot up both Lantus and the fast acting stuff. For supper I had a cup of blackberries, a cut up peach and a carton of Greek yogurt. I should have eaten some more protein, but just the thought gagged me.

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It’s good to breathe

This part written Thursday…

I like walking, but I LOVE breathing :-) I really did wear myself out today. Pacing myself has never been one of my virtues. If I have a good day, I always overdo it. I need to take it easy and build up my endurance.

I wish I understood the science behind my disabilities and why prednisone is such an absolute miracle. It always has been that way for me…at least at first. So many people I know are not so lucky. Some folks become psychotic, some hurt worse, some have truly horrific side effects and for a baffling-to-me group…nothing happens! I go from almost dead to dancing around.

How does prednisone fix so many things so quickly? I don’t understand that at all. I have always had a sky high SED rate. That means I have a lot of inflammation. Prednisone calms inflammation…but what does that mean? Why do MOST things wrong with me get better?

I feel like I have never really seen this building or even my own apartment. I notice complexity and details now. Not only do my eyes work better, I see through new eyes! I feel much more curious. The world is way more wondrous.

I went out to get my mail and bumped into 4 folks yakking. We talked awhile and a strange, nutcase woman came in and rudely wanted to know where carts are. I showed her the shopping cart by the elevator. She snapped not that kind of cart! One for furniture! Well, it’s 9:30 at night. I wasn’t about to suggest we wake up Marion and her husband to get the key to the craft room. There’s a dolly with a rope in there. She likely wouldn’t have approved of that one, either. If the woman had been the slightest bit polite, I would have offered other suggestions.

If this stranger had come over to us, smiled and said hi, my name is ****. I am new here and am moving into apartment #***. We probably would have all pitched in and helped.

The 4 folks by the mailboxes were unmercifully gossiping about everyone. When this new woman showed up, they whispered about her. I tried to escape. The ditzy new tenant and her companion had piled up multiple boxes of crap in the vestibule between the doors, and in front of both sets of doors, plus across the inside door. The automatic door was nonstop opening and closing by itself because of the weight of the crap pile. Geeze! Don’t mess with me on steroids! I feel instant panic when I can’t get out of a bad situation. I told them they can’t just block the only way in and out for everyone. I emphasized ambulances are often here. They acted totally clueless and put out that what they were doing was unacceptable. You know what really sucks? She is moving into the apartment diagonally across from mine :-( We really didn’t need a new nut job! This place has more than its fair share. Sigh…so much for the relaxing evening. I don’t understand starting off life here with rudeness. This afternoon the manager had told me a nice woman was moving into that apartment soon :-p

So while I am sitting outside, there was a guy pulling an absolutely filthy carpet out of the dumpster. Then he buzzed a tenant to be let in :-o Lots of people here have pets that go on the carpets, fleas, bed bugs and probably worse. A few minutes later, a man I have never seen wheels a cart of garbage out. He parks it outside by the front door…and walks off! I saw too much. The creepers come out at night.

I have a new appreciation for my apartment with the blinds closed.

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Written Friday….

Ah, geeze! I opened my blinds to find a transient running their truck to get warm while they put on clothes this morning.

Soon after I heard fire trucks and ambulances. There was someone laying on the lawn across the street. A news truck pulled up simultaneously. No idea what happened.

The woman who does my laundry just came in to get it. She said while I was at FNB yesterday, there were two cop cars in the parking garage and they cuffed and took away a woman. Just as we were coming back from FNB, a tow truck was pulling out a mini van. Bev says the cops took all sorts of things out of the van after cuffing the woman. Crime and craziness are spiraling upward at an increased pace :-o

I had enough money to do laundry today because my disability was deposited early due to the holiday. I wrote checks for bills and have $5.89 left for all of September :-o

Well, at least I have prednisone for now :-) Next…back to the fight for IVIg…

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Amazing day!

I got up this morning and walked around totally without my walker. I did almost go down a couple of times because my legs do give out underneath me with no warning. But I can walk!!!

I went to FNB. Not a very good haul after 2 times through the line.

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It was soooooo amazing! Colors were vibrant, I noticed details in grass and leaves and people. I could see better because my eyes were fully open and my peripheral vision was expansive. I could hear individual voices and sounds…not an amorphous roar. I felt so alive! :-)

Got back to the apartment and went to see the manager. I unbuckled my seatbelt and jumped out of my wheelchair! I put my arms above my head and twirled in circles. I laughed, I smiled. I couldn’t shut up. Everybody who has seen me today is stunned. The last man I talked to last night thought I was having a stroke. He was blown away at the change today :-)

Everybody had smiles as big as mine. My neighbor is disappointed that I no longer look like I am going to die. She was counting on getting Olive :-p

I got to my apartment and started making tons of phone calls. It was during a couple hours of non-stop talking that the dysarthria came back. At first I was devastated. Then I realized I was late taking my Mestinon and Motrin. Oooooops!

All of the walking, arms above my head, talking, whistling, etc has tired me out. I am just afraid I might lose the ability again. It’s too exciting to rest. These are muscles that haven’t been used all that much the last couple of years. I am tiring them out. Duh! I am trying to chill right now.

I am still waiting for more action on the IVIg approval/denial process. I despise the insurance caseworker. I restrained myself today :-) Instead of telling her to shut up, I told her SHHHHHHHHHHH!!!!! I consider that humongous restraint. She must be used to talking with sheepish morons. It’s as if she has a play book of inane platitudes to spout. She tries to wrest words like a lawyer. Anything to avoid listening or discussing. I again asked her what her purpose in life is. Grrrrrrr…….

Enough for now. I need time to chill out…

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3 AM picture

I woke up at 2. Had a hard time sitting up because I was so lightheaded. On my way back from the bathroom, I realized I was walking pretty well. I let go of the walker, stood straight up and down…and walked like a normal human being!!!!!! Then I realized I was breathing all the way to the bottom of my lungs….and there was no herd of elephants on my chest!!!! My eyes felt less droopy. I went back to the bathroom and looked in the mirror. My eyes were much less droopy :-) I realized I am, however, more red faced. I decided to take a pic. When I went to smile….it actually LOOKED LIKE a smile!!!!! It took about 12 hours and some sleep for the prednisone to do some magic. Wow! What a difference! Then I wondered about my voice. I started talking to Olive. OMG!!!!!! I haven’t sounded like this Wendy in a very long time!!!!

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I look pretty goofy. What do you want for 3 AM? Prednisone is one of those love/hate meds. When it works, it’s dramatic. After awhile, the side effects become worse than the original problem. For now, I will enjoy it :-)

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