Wendy The Wanderer

Stories Of My Life

I hate hospitals!

It’s one battle after another around here. If I didn’t have diverticulitis, I would jump up and run from this place.

Last night I was taken off the IV antibiotic and a nurse came in and handed me pills. She said it was the pill version of the IV Meropenen. I asked lots of questions. Turns out what she said wasn’t true at all. The pills were clindamycin.

I remembered I had a bad reaction before, so Googled it. Site after site said it was bad for MG. When the nurse came back, I told her. She insisted the pharmacist had read through the package insert and it didn’t mention MG. I said they needed to get the list from the MG Foundation.

Then the CNA came in to try to convince me to take it. I took out the computer print out list from 2002 that I carry in my wallet. It listed clindamycin…and the eryrthromycin that hospitalized me this spring.

I have to argue about every detail of my care with these people. They are not letting me use Lantus, so my blood sugar has gone up. They find nothing wrong with up to 150 four hours after a meal. I stay around 100 right after a meal. It’s the difference between sloppy expediency and tight control. They just accept that diabetics will have poor wound healing, instead of the bother of keeping blood sugar near nature’s 85-95 normal. My wound healing has been quick using anyone’s standards because I keep tight blood sugar control.

I went to my old blog and Googled clindamycin. I took it October 24, 2009 for phlebitis and cellulitis. I knew it was on my don’t take list…but the Adirondack hospital people insisted I should take it anyway, and “they” would deal with the consequences. I went on to have MG weakness and breathing problems and several months of severe diarrhea. There was no “they” dealing with the consequences, just me :-(

The night nurse here was a total bitch to me. She badgered me many times and insisted I take the clindamycin because I would be just fine. She was making me nuts. Thank God another nurse came in!

A doctor was sent for. This morning I was told the doc didn’t want to wake me up, so left. What a bunch of BS. They woke me up every hour or two for other things.

Next a nurse and CNA came in to berate me for not taking clindamycin. The nurse hooked me back up to the Meropenem IV antibiotics, tsk, tsking the whole time. I used to like that nurse! I told her about the botched hysterectomy and how I kept insisting I had an infection and no one would listen. I showed her the wound pictures. I explained that I didn’t even have cancer and that this whole ordeal had been caused by doctor’s mistakes.

In Utah it all started with the neurologist refusing to give me IVIg. I then had all sorts of MG breathing and weakness problems. My internist gave me eryrthromycin which caused me to go into near MG crisis. Then I had to be hospitalized for that and was given high doses of IV solumedrol which caused me to bleed, which got me the cancer diagnosis. A bunch of dominos.

I then told her the long story about my appendix being ruptured and no one listening to me. I told her about my family doctor declaring me psychosomatic and then soon after, the college doctor diagnosing me with rheumatoid arthritis. Whenever a doctor didn’t know what was wrong, they blamed it on me. Over the years I got diagnosed with one autoimmune disease after another. I explained to the nurse that I had to learn to believe in myself and stand up for myself every step of the way. Almost without fail, if I backed down, doctors caused sometimes life threatening or at least significant problems. By the time I was done, the nurse was hugging and patting me. She saw the pictures, heard the stories and finally understood where I was coming from. If only medical idiots could try being me for awhile….it would be poetic justice.

The healthcare system we have is better suited to acute illness with people who are passive. Myasthenia gravis isn’t even understood by most neurologists, let alone other kinds of doctors, nurses, etc. It’s like constantly beating my head against the wall.
Well…time to prepare myself mentally. There are many battles to fight today.

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Ahhh….ha ha ha ha!!!!

I went to the closest Ward building today because my belly hurts so much. The drawback is that I am allergic to the building.

Real life is very different from my blog. I come here to document my maladies and blow off steam. That sure was true today.

The older missionary couple who have been bringing sacrament here to the apartment building were leaving the Harvard Ward today after serving there 3 1/2 years. She gushed over me, saying that everybody in my building is in awe that I am always happy, constantly smiling and that I never complain. Yup…that’s the difference between me in public and me on my blog.

When out and about I am generally grinning and cheerful. I engage anyone and everyone in conversation. I spend a lot of time listening to others and I don’t complain much. I save the bitching and moaning for my blog.

After sacrament meeting, I was asked if I was going to stay. I said I wished I had brought my inhaler and I thought I’d probably just go home. That’s it.

Reality is that it was hard to sit there with my chest a combo of on fire, with an elephant sitting on it. I was having a tough time sucking in enough air. I spent almost 2 hours dabbing allergy tears from my eyes, blowing my nose and coughing. Sigh…I took allergy meds before going, but totally forgot about needing an inhaler there. It would have been sooooo soothing to take a couple of puffs. Rats!

Then, of course, my belly pains were sometimes excruciating. Not all of the dabbed away tears were from being allergic. I am amazed at how well I can fake being OK for an hour or two. I forget that what I am feeling is only something I am aware of.

It was cool to reconnect with folks from that Ward :-) Too bad the building makes me miserable!

On the way home I screamed each time I hit a bump and I cried from the pain. That’s because nobody was looking at me. I was free to be in pain without embarrassment.

I think I will spend some time today pondering how I perceive myself versus what most people tell me. Doctors everywhere I have ever lived have said they wish they could bottle whatever it is that makes me happy in the face of adversity…and give it to their patients.

I know what it is! Faith in God, the light of Christ and the help of the Holy Ghost. No need to bottle it, those things are available to all people. Seek and ye shall find :-)

I also highly recommend having a blog or diary to have a place to say things that might not get said out loud!

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Can I be all better now???

Yesterday’s health care and public transportation took a toll. I went to bed before it was dark outside and got up this morning when it was light out.

I woke up for a few seconds all night long, many many times. My joints hurt like heck, my belly was in agony and I wasn’t just soaked in sweat…I had little pools on me that drained off each time I changed position. Yuck.

This morning I feel like every disease and condition I have is contributing a little something to the mix. I am miserable and crying. Dang.

Did I really sign up for this before I came to earth to get my body? Was I nuts??? I love exploring the earth, but I sure am weary of some of the worldly stuff I go through! I have about had it with media that portrays people like me as lazy slackers who just don’t want to work. During college I worked more than full time. As a chef, caterer, farmer or whatever I did, I worked my butt off. I did NOT know this was going to happen to me. Working full time is a piece of cake compared to being sick, poor and disabled.

I doubt there are very many people who fake disability just to get out of working. It’s demeaning. You lose control of your individualism, freedom and self-determination. It sucks.

Oh, booger brains!!!! I wrote a really long, heartfelt post and saved it as I went. WordPress kept popping up errors. Now it’s lost from this point on :-(

Much of what I wrote was a reaction to talking about disability and income on a few groups, plus reading this blog post today.

Most people think disability is quick and easy to get. It’s not. The first time I applied, I got the automatic denial, didn’t know any better and gave up. At that point I had enough work credits to get SSDI. The next time I applied, I was older and had gone awhile without work history. By then I was only eligible for SSI. It took 2 1/2 years to be approved. When I got my retroactive check, a bunch went to pay back the state disability I had gotten while waiting for Social Security.

Thanks to media hype, there’s always talk about people living high off the hog on food stamps. In reality, someone like me who has $205/month income after paying rent is eligible for about $100/month in food stamps. That’s supposed to cover 90 or so meals each month. Could you do it? Most folks probably spend that picking up beverages and snacks on the go. It greatly irritates me when people do not keep track of every penny they spend, yet claim to live on some impossibly small amount for food.

I have seen and experienced stuff while homeless in Lakeland, FL, Portland, OR and Salt Lake City, UT that will haunt me for life. Long lines for soup kitchens, people with horrific mental and physical disabilities, substance abuse, hopelessness, all sorts of abuse, rags for clothes, no place to bathe, constant rousting by cops…and on and on… Of course I have always had a fear of me being in that predicament next. I have been extremely blessed that it didn’t come to that.

As I keep saying, most safety net and helping organizations are lacking funding or don’t really do anything. Much of what can be found online is a scam.

I see lots of homeless people almost everywhere I look here in Salt Lake City. They are begging on street corners and sleeping in parks during the day. The library is full of folks desperate for a place to be comfortable where they can feel normal for a few hours. It breaks my heart.

SLC is also full of more cranes and construction projects than I have seen anywhere else. Unemployment here is supposedly much less than the US average. This city has a bunch of homeless, poor, and lower income folks and a bunch of people who seem to have plenty of cash to throw around. Places like City Center and Trolley Square sell expensive clothes, and gadgets and have fancy restaurants. There’s not much in the middle.

I am scared for the future of our country….and me.

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Another dramatic wake up!

Lightning must have hit somewhere here in the downtown area. It was like a boom in a canyon. The boom reverberated between all the buildings. It was a scary impact!

I had some ground beef and pork in the freezer. Today I made 2 hamburgers (ground beef) with fried onions for breakfast. It was the first time I had ever used the George Foreman grill I got at Deseret Industries. Pretty good :-)

Then I had about equal amounts of beef and pork left that I made into meatballs. I gently fried them in the cast iron pan and now they are simmering in spaghetti sauce from the free table. I snagged a couple to eat.

Here’s the recipe I used

Everybody keeps asking if I am eating plenty of protein to heal my wound. I want to be able to say yes.

I have come a long way to be able to really cook again! Before, it was torture to stand up long enough to nuke a frozen breakfast sandwich.

I figure I must be doing a lot of healing today. It’s hard to stay awake!

The temperature has plummeted to 68° thanks to the storm. I am soooooo grateful after all of these 100+ degree days. I have the windows open and my fan on. It’s a drag to be locked up in the same old stale air to keep cool.

I need some new blogs to read. When Google Reader bit the dust, I switched to Feedly. Most of the blogs I read are about RV’ing, homesteading and food. I will check out anything even remotely interesting. What blogs do you recommend? Either send a comment or write to me at wendysuewyatt@gmail.com

Thanks! :-)

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Nice evening

It was 83 degrees at 8 PM. I got Rhett to go out to the RV with me. I figured there wouldn’t be much sun and it was quickly cooling. We grabbed a grocery cart to load things into.

Whoa!!! I am even weaker, sorer and more out of breath than I thought. Opening the RV door and putting the step on the ground had me gasping and sweating. I think I am as weak tonight as I have ever been. Going up one step seemed impossible. There are 3 steps. Ohhhh. My. Gosh!!!!

I filled the cart with pillows and blankets. I tried to lift other things, but just plain couldn’t. They will have to wait for another day. It was all I could do to lock up the RV and make it back to the apartment. I parked the cart in the spot cleared for the power chair. Tough luck that I am supposed to take the cart back ASAP. I can’t.

I have GOT TO get the RV ready to sell. I am going to miss it :-( You have no idea how much the loss of the possibility of freedom hurts. I have to face facts. The power chair cannot be carried in or on it, we will not be able to camp without hook-ups for our CPAPs and my oxygen concentrator and most of the time, I am just too weak to drive it :-( Coming to terms with all that sucks!

I went 24 hours without a pain pill. Just gave up and took one. As I was afraid of…the surgery/anesthesia kicked my butt. It has set off a whole cascade of weakness and autoimmune problems. Not much fun. Sigh….

Reading blogs tonight, I particularly enjoyed 7 behaviors to stop tolerating from others

Got any good blogs to share? Either your own or ones you like to read?

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Pooooof!

I spent all day writing a blog post. Pushed publish and it vaporized.

I think I am reaching the limits of my patience when it comes to getting online via this tiny Android.

My eyes are blurry and have double vision. I hit way too many wrong letters. It takes me forever to correct all the mistakes.

I am not feeling well. Got wiped out by sun yesterday and fluorescents today.

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Living with Chronic Illness: The Drug I Hate to Love

http://sickofmg.blogspot.com/2013/04/the-drug-i-hate-to-love.html?m=1

Somebody going through the same sort of thing as me, right now. I can so relate! It’s hard to suffer fools while on steroids…and pretty much everyone seems like one while “under the influence” :-P

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Soooooo much to catch up on!

Yup…the apartment was a mess. Leaving Rhett home alone is challenging for both of us. Most of the time I have been home has been spent cleaning up or cooking. I am soooo tired….

I have also been spoiled. I now want ice water 24/7 :-) I need to buy some nice, clean ice cube trays and keep ice on hand. I drink much more ice water than room temperature water. If this hospitalization has taught me anything, it’s that I thought I was drinking more than enough water…but probably not. Sigh..

I came home to terrible air quality. The woman next door got new carpet and linoleum put in. Lots of nasty glue and other smells. My throat swelled up and I couldn’t taste last night. I am glad I can taste now!

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I made myself a big plate of steamed bok choy, peppers, garlic, zucchini and cilantro with a peanut/sesame sauce. I also figured out the “meat stick” mystery. 

Rhett was all excited that he found “meat sticks” in the fridge. I was thinking slim Jim’s. When I went to cut up some Chinese liver sausage into my breakfast, they were missing. Aha!!! He liked them au naturale. Snicker….

WordPress put out a new blog app yesterday. It sucks. I hope they soon issue updates.

Well…its good to be home and feeling better. I have a lot to do…..and a lot more to say later….

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Blog writing

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This is sort of my online diary. I use it to keep track of my symptoms and doctor appointments, sometimes things I eat, often how I look, etc.

I have been writing ever since AOL offered journals. Before that, we had a website about homesteading, unschooling, the farm, our adventures or whatever came along.

As I get older and sicker, I honestly don’t know why anyone wants to read my blog any more. My kid calls and a few people email if I get too quiet, but that’s it.

I like to read other people’s blogs for many different reasons. Usually it’s about preparedness of the sort the LDS church advocates or about specific health issues, RV’ing…a little here and a little there about various issues. One blog is quite conservative, another liberal. I like hearing from all sorts of folks. I also know I am not very loyal. As my interests change, I dump some blogs from my newsfeeds and add whatever is fascinating at the moment.

It’s always enlightening to find I am not the only one thinking through the same issues or hungry for the same adventure or food :-)

If there are ads on my blog, they are put there by WordPress, not by me. I don’t make a penny on this blog. If it wasn’t for the Android app, I wouldn’t even have a blog any more. I only get on the internet via cellphone.

I will let you all in on what is NOT a secret :-p If I have not met people in person, I cannot keep straight who is who on the internet. I have ALWAYS been easily confused about people. Generally the only folks I become friends with are the ones who are persistent. That’s because I can barely remember anything.

I talk to the same bunches of people here at my apartment complex, but could not tell you hardly anyone’s name. If I don’t see someone for a few days, my mind goes blank.

I sure as heck am not clueless on purpose. In Vermont I always depended on Peter and Heather to tell me who people were. I have some pretty amusing stories :-p

Somebody I don’t remember ever hearing of, wrote some pretty snarky comments Sunday. When I edited out the nastiness, she left in a huff. Said I was down one subscriber.

So??? I wish all mean people and/or idiots would go play in traffic somewhere else. This isn’t a popularity contest, I am just living my life day by day and keeping track of bits and pieces of who I am and what’s going on.

If you find something entertaining or educational or whatever…you are welcome to stick around. If all of my mistakes and other things irritate you….please, dump my blog from your newsfeed! Do what I do and go find something more interesting :-)

People live in their own little self-imposed hells. Break free! Follow your bliss! Get your own life!

I follow my own advice from time to time :-p There is always a new Wendy around the corner. I hope I recognize her when I see her.

Snicker…..and YES….I exist just to irritate YOU.

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Today is Rare Disease Day

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A rare disease is one that fewer than 200,000 Americans have. This is also the 30th anniversary of the Orphan Drug Act, which provides incentives for companies to develop medicines for rare diseases.

Myasthenia gravis is a rare disease. Here is the official Link to find out about the rare disease of myasthenia gravis.

As someone with MG, I am glad that somebody, somewhere is doing research and looking for answers.

Ironically the medicine I take for myasthenia gravis…Mestinon, or pyridostigmine bromide has a use with the armed forces. It was used during the Gulf War to protect against chemical warfare.

Mestinon has been implicated as part of Gulf War Syndrome. I can still remember when the government’s use of this drug made it harder to get and there was panic in the MG community.

For me, going without it is an unthinkable nightmare. If I am late for a dose, I begin choking and having difficulty talking and breathing pretty quickly.

This guy doesn’t have MG very bad, but this is a video of him talking about his Mestinon

Here’s a video of a doctor talking about Mestinon

I watched this YouTube video of a woman who was just starting Mestinon. I remember real well how it hit my guts and gave me horrible cramps and diarrhea. Then I looked and found another video by her, done in February .

It made me very, very sad to see how she has changed physically and is so discouraged. It was like looking at myself. I have been through a zillion doctors and diagnosis and treatment scenarios. The truth seems to be that nobody knows what to do with people like us. We have rare diseases and no two docs ever agree on what or how to treat it. As she says….it bites! Funny how I can deal with my tortured history and present medical mess better than watching this woman I didn’t even know an hour ago. It sucks big time to see her sad and sick :-(

Anyways…today give some thought to us folks who deal with rare diseases and clueless doctors on a daily basis. Thanks.

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