Wendy The Wanderer

Stories Of My Life

I hope your Thanksgiving started better than mine

I started bleeding where I shouldn’t. I felt horrible and was weak and droopy. At 5:49 Wednesday, my doctor had his nurse tell me to go to the ER. I thought forget it! But the bleeding scared me. It was considerably more than the last two times. I packed up in case they kept me overnight and took TRAX to the ER. The ER was full!

I was taken right in since they already had a note from my internist in their computer. It was a lot like the last two waste of time ER visits. Instead of caring about what I was there for, they seemed obsessed with my scanning dysarthria. It must be in my notes that they think I am faking it. I guarantee you can’t talk like that on purpose!

I was told the bleeding had stopped, the fever was down and whatever was wrong with me wasn’t an emergency. The doc and nurse were very curt with me. I was in soooooo much pain! So, I was turned loose about midnight.

The last TRAX train had already left the station and there is no train on Thanksgiving. It was a long, cold, steep 4 miles home via wheelchair. I cried about half of the time. It was wicked bad painful. I barfed bubbles all the way home. By then the bleeding started again. Lots of pelvic pain and pressure.

Sleep was the most painful yet. I want to know what’s making the lumps all over my body. My left breast hurt to the point of me screaming and sobbing. Both hips and thighs are only slightly less painful. Really, I have never had those painful lumps before this last bout of them.

I got notice that FNB had scored a huge haul of food. I didn’t want to go, but I also didn’t want to pass it up. It’s all stuff from Trader Joe’s 😀

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I heated up the chicken with bow ties, peas and asparagus for my Thanksgiving dinner. There was no way I had enough strength to go to Liberty Park for Thanksgiving dinner.

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I slept a few hours this afternoon and woke up in a mighty hurry to get to the bathroom. I don’t feel well at all. I think the mystery lumps and the pain they radiate is even worse than my abdominal issues. I spent a lot of time today sincerely wishing I knew where to turn for medical care.

Today I am most thankful for all the people who care about me. I am very, very grateful for my daughter and for Olive.

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Another Wimpy Wendy Day

No word yet about my CT scan. I am very weak. My left eye keeps closing shut and the right eye isn’t very perky. I look better than I feel and that’s not saying much. 😜 Snicker…

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My voice is broken. I am weak thanks to MG….from head to toes.

To make it seem even worse, all the TV stations are showing free Thanksgiving dinners that were put on around town. I never hear about them until they are over. Some organizations are doing events to get presents and coats and food for poor folks. And, they keep showing the turkey give away that I DID know about, but am too sick and weak to trek off to. How the heck do people find out about this stuff? How come nobody remembers wimpy old people like me who are sick and disabled and stuck at home? Yes, I am feeling sorry for myself today.

Between the ads and news, I pretty much always feel sorry for myself this time of year…and during most holidays. I am old and alone and it sucks! I beat back the feelings of loss and abandonment most of the year, but it’s not so easy right now. I keep thinking about all my failed relationships with men. I have spent my entire life longing for human closeness. I am very thankful for my daughter 😊 Most other family relationships suck. I am also grateful for the people who once were strangers and are now friends. 😀

But…the reality is that I am all alone, sitting at home on a gorgeous day. I physically feel horrible and am sobbing my heart out. I think I just need to cry my brains out and try to release some of the pain. I spend a lot of my life feeling like an observer of life rather than a participant.

I see people going on vacations, going Christmas shopping, gathering for meals, going to movies or concerts or restaurants or the zoo. I go grocery shopping and whole swaths of the store are things I can’t afford. I see clothes stores and wish I could pay for one new outfit a year. I see people going for a ride in a car and I wish I had that freedom. I hear about something people say they hate, like a trip to the dentist. I wish I could go!

I wish I could go to church or the family history library without getting sick. I wish I had the energy to see Temple Square lit with Christmas lights. Most places in SLC are off limits to me either economically or because of health. My world is very, very small.

Right now they are doing a story about the Day of Thanks. There are pics of heaps of real, decent food being donated to the food bank. How come none of it ever shows up in our boxes??? This month was the worst we have ever gotten in the 2+ years I have been here. What am I doing wrong in life? Why aren’t I worthy enough? Why are other people happy and healthy and I am miserable today?

Ohhhhhh…..guess who called? The internist’s guy nurse. He says my abdomen is full of new sinus tracts and fistulas. That means my intestines and organs are all connected together. They are not supposed to be. That’s what’s causing the constant infections, fevers, chills, night sweats, etc. That’s also what is making my MG so much worse.

The nurse told me to call the surgeon. But last time the surgeon said I would die if he operated and would die if he didn’t. He refused to operate on me.

So, I have calls in to the surgeon and gastro nurse. The surgeon’s nurse told me to go to a different hospital’s ER and get antibiotics. She says my usual ER is full of idiots 😳 I asked if she would contact my internist and tell him to give me antibiotics. She is working on it and I have an appointment with the surgeon for Monday.

Gee, no wonder I have been so sick.

Everything I said in the beginning of this blog post pales in comparison to the latest news. Sigh…..

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Good thing utilities are included

I just couldn’t get rid of the stupid chills. I had on lots of clothes, was covered by my new blanket and warmed by the cat. But…my feet and hands were pure ice. Yet, my face and most of my body were burning up. I have a pointer thingy to poke at the phone. I use it when my fingers feel like the bones are popping out. I also like to pick it up and hold it against my face or neck. It goes from cool to blazing hot in seconds because it’s metal. Aluminum I think? It actually gets too hot to touch…from my face!

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I had the thermostat thermometer saying 86 degrees before the core of my body finally warmed up. Geeze!!! Then I turned off the heat and put on my skimpiest nightgown. I am just the right temperature now, at least for a few minutes. Ironically it’s 45 degrees outside…which is pretty toasty.

I hurt everywhere as if I had the flu. Drinking barium sure got something mad 😯 If I feel this bad with 800 mg of Motrin in me, imagine if I didn’t have that med!?!? I went up to 102.1after taking Motrin. Now I am down to 99.9.

If the CT scan doesn’t give the answers for what’s wrong, I am going to go stark raving mad!!!!! This has been going on for months. How much can I endure? Is this a test?

I am craving potato chips something fierce. I must have lost too much salt again. My blood tests often show I am low in sodium. Is that from all the night sweats? My results swing back and forth over a large range of highs and lows. I have never been very good at being normal 😜

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Backwards day

I spent the morning sitting in the hospital drinking 2 bottles of berry smoothie barium. Yuck! Heather called and my voice was broken. I also talked to a woman in a power chair who has MS. I lusted after the plexiglass table attached to her chair. I was sooooo SOB and dizzy by the time I got my CT scan.

Drinking that stuff is nasty. I went in fasting since supper. Not easy to glug that junk down. When the test was done, I bought a $3.95 calzone in the hospital cafeteria. Not the smartest thing to do. I had to use the bathroom 4 times before I could leave.

On my way to radiology, I took this picture from the 4th floor skyway. That’s the Great Salt Lake in the distance near the building’s left corner. So much for snow up on the benches.

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I took a picture of the hospital’s Christmas tree. The woman with the two rolling suitcases offered to take my picture by the tree. I said no thanks, I didn’t want to know what I looked like. She insisted I am beautiful. Snicker….

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On the way home, on TRAX, I saw a teeny weeny bit of snow. Most of the snow on the lower mountains is melting. We are supposed to have 55 degrees on Thanksgiving.

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When I got home, my voice worked! I looked around for Olive. She was in bed, being cute.

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Since coming home, the bathroom has been my best friend. I have had deep chills for hours, with accompanying headache and earaches. I hope my doc will know what to do next by looking at the CT scan. I feel soooooo yucky 😕

My next decision will be to decide how bad I want a free turkey. Over 3000 will be given out tomorrow. Will the line be “forever”? Will the weather be OK? How many hours will it take? 4000 people showed up for the free Thanksgiving meal today at the sports arena. 😯 Being sick and disabled is a full time job. I couldn’t go to FNB today because I was at the hospital. There won’t be another FNB giveaway until Saturday, since Thursday is Thanksgiving. Decisions, decisions….

I have a fever of almost 102 right now. It feels higher than that. Ow. My voice is broken again. That’s OK. I am waaaay too tired to talk!

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Snicker……

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So tired…..

I fell asleep for a whole hour. But it was a twilight sleep. I was constantly wiping away night sweats and drool. Then I couldn’t stay flat another second. My right nostril and sinus were plugged up and I couldn’t breathe. I got up and blew out incredible amounts of snot. I never remember this particular sensation ever in my whole life. It included coughing up equally impressive amounts of slime. And now the left side is stuck! Eeeeewewwwwww.

Then there’s my right thigh. Last week it felt like a blood clot in my left thigh. Now the other side has a big lump that is hot and painful. The left lump is still there.

Getting flat in bed is not easy. My muscles won’t relax and the groin lymphs cut off my blood supply. My feet get instantly numb. Then when I get up, feeling comes back. Nothing that is happening to me is normal……even to me! I just want to sleep. Sigh….

What a very loooooong night! I have hardly slept. The lumps all over my body were so painful that I couldn’t sleep. And as long as I was flat, I couldn’t breathe. I got up when it was still dark out.

Around 11, I put a poncho over my casual clothes and went out to mail a letter. A couple of people talked to me and I thought nothing of it that I could talk. Duh. Around noon, the hospital called and gave me a different time to show up tomorrow. My voice didn’t work. Sigh….

Yup, and now I am very weak. It takes every bit of my strength to go from my comfy chair to the bathroom with the walker. My MG is revolting against all the pain and lack of sleep. I am exhausted.

Yup, I really was! Just woke up from an almost 6 hour nap. Now my internal clock ought to be good and messed up.

I can tell there’s something weird wrong with my body chemistry. The last couple of days I have felt like crying for no reason. I am not sad. That used to happen all the time thanks to WNV. I am grateful for my WNV support groups! No matter how strange the symptoms, there are other people going through it. Same with my MG groups. With any chronic illness, docs are no help at all when it comes to day to day life.

I was afraid I wouldn’t be tired tonight after the long nap. Ha! Can’t stop yawning and can’t keep my eyes open.

The highlight of my days is Olive. She does some pretty funny and endearing things. I have a bunch of pics.

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People here think I am crazy

I guess it’s because I prefer being cool to being hot. The high today was 36. I had the windows open about half the day. It felt good 😀 I wish I felt good, but you can’t have everything.

Here’s a picture taken from my comfy chair. The short mountains are now covered with snow. We don’t have any snow here in SLC. Don’t those mountains look fresh and clean and sparkly?

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I went outside to dump garbage with no coat on. You would think it was below zero from people’s reactions. Then I sat and waited for my new home teachers.

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I stared at the door.

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I was surprised when an older couple came to the door. Turns out one of the guys couldn’t make it, so one man brought his wife. My voice hasn’t worked for several days. That was frustrating! Amazing how often I talk about daughter and doctor. My broken voice makes them sound exactly the same. Finally I switched to calling Heather my kid.

I have hooked more people on salt lamps. This couple were amazed how much fresher the air is in my apartment compared to the hallway. They decided to buy some of their own. I need to start a salt lamp business. Snicker….

Talking to them made my eye droop. When I showed them how to make my voice work by tipping back and holding up my head, that was the end of fun Wendy. My eye drooped shut, my breathing became a huge struggle and I was massively dizzy. Good thing I waited until they were about to leave for that stupid trick. Sigh…

Now I am back to battling wicked painful swollen lymphs and super owie collar bones. My ribs do NOT get happy from all that desperate sucking in of air. Oh! Glad I wrote that! I just took meds. That should help. No chills yet tonight. I am more like a frog in a pot. I have been getting hotter and hotter for hours.

Last night was the usual torture of non stop night sweats. I can feel really big swollen lymphs in the cracks of my legs and near my hips. It’s interesting that some lymphs hurt like heck and others I don’t have pain from. Also, my hand joints can be excruciating the last few days. My other joints are working at achieving that level of pain. And oh, let’s not forget the killer headache 😕

I sure hope the CT scan will help doctors pinpoint what the heck is going on. Have you ever had a fever for months???? I don’t recommend it!!!!!

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A miracle!

I just slept 8 hours straight, without waking up!!!!! I needed that desperately. My nights are usually spent awake/asleep/awake/asleep. That’s kind of ironic after how difficult it was to fall asleep.

When I got in bed, I couldn’t breathe. I checked out my entire CPAP/oxygen concentrator system for holes in hoses, correct settings and pressures. I was in so much pain that there was no comfortable way to position myself. Then the next thing I know, it’s 8 hours later and I can barely move. I had a heck of a time standing up. When my meds start working, I hope to go back to bed. Soooooo sleepy!

Another thing I woke up to was a distressing email. I have bumped into yet another woman with myasthenia gravis who is being messed with. So far, the majority of women who I have heard from have been undiagnosed of their MG in Utah. Seems like we all have somatoform or conversion disorder or Munchausens or some other “all in your head” thing instead. How can this happen? Why? People are going to die. The whole thing is mind boggling. Must be that moving to Utah makes us CRAZY!!!! 😜 Sounds like a group malpractice suit to me!

At 7 AM, it’s 45 degrees outside. They say it’s all downhill from here, though. It’s supposed to start raining and then snowing. The nearby mountains are expecting 1 or 2 feet of snow. They’re saying avalanche danger is high. Sounds like a good time to stay home and be cozy!

I guess I missed out on a few chill/fever cycles by sleeping so soundly. My body is trying to make up for that already. The goosebumps are having a field day. Yuck. I feel really sick. I guess that’s my cue to go back to bed. Even Olive is yawning 😴

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Mad isn’t a strong enough word

A friend just sent me an email about my CT scan run around. That inspired me to try calling the clinic again. The messaging service claims the guy nurse called me at 5-something last night. Total BS! My phone shows no messages since a wrong number on the 12th. It shows I called THEM 4 times yesterday, but no incoming missed calls. Could the health care system be any more screwed up?

I called radiology and got an appointment for a CT scan Tuesday, the soonest they had. I have been soooooo sick! Somehow I am still here. Pretty dang tired of the chills and fevers!!!!!

Today is beautiful. The high is supposed to be 50 and it’s sunny. Tomorrow we might be under a winter storm warning. I didn’t buy many groceries last time. Just two eggs left and no ketchup or sour cream. I REALLY should go buy food. I REALLY don’t want to move. Sooooooooooooo queasy. Sigh.

I only need to go 3 blocks in my wheelchair, then get on TRAX. It sounds so easy! Ugh. I can do it, right????

Huh, I thought I posted this. I did venture out. The old guy contingent told me to go to Ace Hardware. It was way cooler and funkier than I expected. I took my power chair headrest and spent 43 cents on a nut, bolt and washer. Now my headrest works 😀

The same strip mall has Trader Joe’s. I couldn’t believe how crowded it was! 😧 I got sick from all the people fragrances. What a relief to get the heck out. Then I went to Smith’s for their sales and freebies. I got a free bottle of Herdez cooking sauce and half a pound of free honey ham with e-coupons.

It was such a gorgeous day that I came home in my wheelchair, not by TRAX. The train was like a zoo today. It was much more peaceful on the sidewalks. At one house I saw a pair of Day of the Dead flamingos. They are perfect for this season 😀

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I talked to Heather quite awhile on the phone. By the time we hung up, my fever had me burning up. And dang it…now my tongue is swollen and my collarbones hurt from talking. I am just grateful that I CAN talk!

This is maybe the third time this has happened. I was in my wheelchair and was twisting around. A lump in the left side of my neck got caught in a cord in my neck. It was scary for a few seconds! I could feel a fairly large, hard lump. What the heck? Ouch!

It’s past my bedtime. I am real tired, but all wound up. I need to take chill pill lessons from Olive.

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Still waiting….

I tried calling the doctor’s messaging service many times today. Each time I was put on hold with screeching “music”. I would wait a few minutes and hang up. This went on for hours. Finally a real person answered…and put me on hold. So tired of this crap! After more screechy music, she said my doc was back at work. I said I had left numerous online and phone messages about the CT scan that was prescribed on the 10th. Then she remembered me and said she would call me right back. Still waiting…

This morning I got an email saying there was going to be lots of food at FNB. I decided I would go. My neighbor and I toodled over there together. It was about 40 degrees and the temperature inversion was thick. Ewwww…. While waiting in line, my eyelid drooped almost closed. So much for it needing heat or sun to droop. I was sorry I had gone at all. I didn’t feel well.

I am back to thinking that much of the food is more a burden than a blessing. The only meal I ate today was the chicken wrap and popped potato chips. It’s sitting in my gut like a cannon ball. I went through the line twice and picked out stuff, but am less than thrilled now that I have looked it over. Most of the fruits and vegetables were frozen solid. That means they will soon be rotten mush. The bread is as stale as can be. Sigh…..

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It’s after 6 PM and nobody has called about my CT scan. My fever is up to almost 102. I just took 800 mg of ibuprofen a couple of hours ago. Dang.

I sooooo don’t feel well 😞

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Let’s pick on Wendy!

Actually, I think it’s a form of endearment. My neighbor and the manager ganged up on me. A few others added things as they passed by.

Ever since September, whenever my body does something obviously “sick”, my neighbor uses a mocking voice and says I am just seeking attention. That’s because she watched me go downhill for weeks, lose my ability to talk and was horrified that the ER doc decided I was just there seeking attention.

They both told me my eyes were drooping when I pulled up near them. Then my neighbor talked about my eyeballs jiggling all around. They found various ways to tease me about that. I joked back and they both said my eye was even more drooped. I got teased for that and the next thing I know, my voice is breaking up. On and on they went about me seeking attention. Then my mouth drooped and off they went with that. I looked at them in exasperation and told them to quit looking at me! I was teased unmercifully over and over. They told me I can’t hide and they are keeping an eye on me. Hmmmm…good thing I have a sense of humor! I felt like I was in a celebrity roast. I guess they are trying to prove its NOT all in my head. Truth is, it was a bit distressing to realize I can’t hide much. Sigh….

I accidentally went two hours past time to take meds. My left arm went totally numb. Once I got back to my comfy chair, I realized my left leg is worse. The entire depth of my leg is one giant, painful cramp. Figures it would hurt more once it got dark and cold out.

The pain was too much. I went to bed early. I woke up around 10:30 PM and thought it was morning. Me and all the bedding were soaked in night sweats. I towel dried and went right back to sleep. As usual it’s nasty to put on soaked CPAP headgear and get under a wet blanket. Gross! I remember wiping sweat from my face all night long. I am getting really good at being twilight awake and immediately conking back out.

Whew! I can tell the temperature inversion is here! My apartment smells like exhaust. There can’t be too many cars already at 4:30 AM. Yuck! I hate the winter air here 😕

I seriously want to go back to sleep. As soon as I am dry and my pills are settled, I am going back to bed. My head and guts…and everything else, hurt like crazy.

During business hours I am going to get answers about what’s going on with my doctor. This whole thing is beyond ridiculous.

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