Wendy The Wanderer

Stories Of My Life

one of those no good, very bad days

I went to DI this morning to buy kid books. I dropped my purse on the floor and picked it up. Unfortunately my cell phone fell out and I didn’t know it. It was promptly stolen. I talked to the store people who reviewed their security cameras, I went to the cops, the bank, erased my phone remotely, cancelled StraightTalk, etc.

I tried to get a free Lifeline phone, but the last time I did that, it was for Rhett. The system says I still have Lifeline more than a year and a half after it was cancelled. I need to call the government and figure out the glitch.

Now no phone, no computer. My blog looks very different on this borrowed apartment complex computer than on my cell.

I am thinking I should just use a free phone and get internet. Tablets are a cheap alternative to computers now. Unlimited internet would open up a whole new world to me.

I am soooooooooo bummed about my phone. I am not thinking nice thoughts about the opportunist who grabbed it and ran. Grrrrrrrr…..

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I don’t want to go!

I haven’t recovered from yesterday yet. I feel like a groggy, sleepy, bazillion pound blob. I can barely move and breathing is a struggle. I have an appointment in a couple of hours.

I wrote that much and realized I had to get ready. I checked the weather and it said a partly sunny day with no precipitation. I get outside and it’s raining! The closer I got to TRAX, the bigger the raindrops. I got off TRAX at the south campus station and it was SNOWING!!!!! Figures. I had to go 7/10ths of a mile by wheelchair to the orthopedic center. What a PITA in the wind and snow. I got there a little too early and hadn’t eaten, so I blew money on their cafeteria. I got a breakfast burrito.

Went back to PT and was whisked to an office. The doctor doing the back pain study was very nice, and fun to talk to πŸ˜„ He is from Saudi Arabia. His country FORCED him to come here for education. He said he was scared because he’s Muslim and he had heard bad things about how he would be treated. He has been here 5 years so far and loves it. After an hour of the professional stuff, he spent half an hour telling me about his father’s mango farm, his trips to the Red Sea, and he had pics of Yemen/Saudi feasts. He told me the three best places in town to eat that kind of food. Heather…remember Shawarma King, Shish Kabob House and Shahrazad Restaurant. That’s his order of preference. πŸ˜ƒ We had a great time.

When I left the building after noon, it was a gorgeous day in the 40’s. I met an interesting guy at the bus stop. He works at the SPCA where I got Olive. He is excited because he is soon going to adopt a miniature shepherd as a service dog for his brittle diabetes. He told me to get on the black campus bus. The wheelchair lift quit working and the bus driver had to use a hand crank to get me on the bus. He flew around an intersection at excessive speed and my chair did several 360’s inside the bus. What a rush! I got off at the regular hospital so I could use the handicap bathroom. Then I got free water in the cafeteria and snarfed up their wifi. I went out to TRAX, pushed the handicap ramp button to get on the train. The ramp came out half way, the door closed and the train took off!!!! There was only inches between my wheelchair foot rests and the side of the train. I was wedged between a pillar and the train, on the platform. GEEZUM CROW!!!!!!!!! By the time the next train came along, my heart rate was almost back to normal.

I got off TRAX and zoomed a few blocks to my counselor appointment. I talked to him about the transitional care person. He didn’t know anything about her. He wasn’t impressed with what I told him. We had a good time talking. We did get to a part that made me cry. He was doing a computer assessment thing. He asked if I feel guilty. That’s always a sure tear jerker for me. I told him that I feel guilty for being sick. He looked at me incredulously and with almost the same facial expression and tone of voice said pretty much what Heather always does. I said I believe in the atonement, I know I have nothing to feel guilty about, I have read books about it and been in counseling, but I still feel guilty. He said a huge burden would be lifted off me if I could learn to believe it’s not my fault that I am sick. Sigh….

It sure was nice to come home in the daylight! Enough people try to run me over with perfect daytime visibility. I got to my apartment and there was a pile of boxes up against the door. Christmas! Wow 😊 Thank you! I don’t know what I would do without people helping me get things I need…and sometimes things that are wants, too. I appreciate the help from the bottom of my heart πŸ’

The zooming around and going to appointments has made me zombie like. A full night’s sleep would sure be icing on the cake. πŸ˜΄πŸ’€

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A glimmer of hope?

Ugh! I got up at 6 AM to take a shower and get dressed. I was out the door by 7. I had only made it a few yards when I was almost run over. Some idiot turned down the dead end one half block lane between this building and the parking garage. They were on their cellphone and bent down as they turned the corner. The car came diagonally across the lane, directly at me 😧 At the last second, they wildly swerved back. At the next block I crossed twice, north and east. Both times people turned right on red and came within feet of hitting me and the chair. At the next block, a woman was walking her dog. She kept turning to stare at me as I got closer. She liked my flashing headlamp. I told her I had almost been hit three times in two blocks despite the flashing light and large orange reflective flag. She suggested I wrap myself in Christmas lights πŸ˜‰

Salt Lake City roads are wide…..so you can turn your team of oxen around. My flashing light was making all the road signs above and across from the intersections flash and glow. I definitely wasn’t invisible!

Got on TRAX and we made it one stop. Yet another idiot! A car had hopped the cement barrier between the road and tracks. They were hung up on the cement, with both tires running free. We had to wait for a train coming the other way. Then we each got off the trains we were on and switched to the other side. The stop I needed to get off at was the scene of the debacle. I think it was a Prius. The TRAX cops were trying to figure out how to move it. Crane? Geeze.

Several more times aggressive drivers almost clipped me at intersections as I made my way to the hospital. I’m surprised my BP was normal when I got to the neurologist’s office!

I like this neuro. He leafed through my medical records of past IVIg’s. He pointed out my droopy eyes and called my strength “profoundly weak”. We discussed how IVIg makes me much better. He worried about me getting IVIg because I have had strokes. He watched the video of my face and tongue fasciculations. He had his nurse copy all the records I brought with me. The neuro promised to read all the paperwork and he will see me again next month.

Like almost every neurologist before him, he suspects MS. He also wonders if I have other neurological things not diagnosed yet. He PROMISED that he will figure out what’s going on and TREAT IT!!!! More waiting. But at least it’s hopeful waiting. I made it clear to him how much I loathe the first neuro I saw in Utah. This neuro had some amusing things to say about the guy. Snicker….the nurse said they hear bad stuff about that idiot neuro ALL the time.

The TRAX ride home was uneventful. Crossing streets in my chair was much better in daylight. Got to the road DI is on and a big box truck came towards us billowing major smoke. It turned the corner onto my street. The guy standing on the corner with me was freaked. We watched it turn the corner and it instantly disappeared in wicked thick and acrid smoke. All around the roll-up back door, there was smoke billowing out. Our whole block was so bad that no one could see more than maybe 10 feet. I got to the lane and quick turned. The truck was parked on the street right in front of this building.

I don’t know what went on afterward. They must have used fire extinguishers on it. Yikes!!!

Home sweet home. I am going to rest. I earned it!

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Another slow poke day

Still having my love/hate relationship with Valium. I love sleeping and HATE feeling dopey!

It was a weird FNB day. A new person went to get food from stores. She drove all the way here from West Jordan. I heard her telling someone that she only took about half that the store offered. What was she thinking!?!?!!! Later, I got a message that there was more food available at 1 PM. It was after that when I saw the message. Too bad. Hopefully that volunteer will figure things out over time. Here’s what I got..

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It took me a long time to get ready this morning. It was incredibly painful putting clothes on. I sat down for the purple long johns and Ugg boots. What a struggle to put my left boot on! My leg and foot are so swollen that I almost gave up. Look at the difference.

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By the time I got home from FNB, there was no place else for my leg to swell but above my boot…and it hurt! I realized that the reason I am so SOB right now is the swelling all over me. My belly is swollen and all around my lungs is full of edema. It sure doesn’t feel good πŸ˜•

This morning my voice worked for a few sentences and broke. When the phone rang this afternoon, I was really surprised when my voice was perfect. You know what’s a bummer? I haven’t been able to taste today.

I got sleepy after 5 and woke up after 9. I writhed around quite a bit before I woke up enough to get up. It was wicked bad painful πŸ˜• I had really wanted to skip the Valium tonight. The ache in my left leg is deep down. I am hoping I don’t have a blood clot or something like that going on. This pain is brutal. has it been three weeks now?

I just got an email asking if I would like to be part of a study about lower back pain. I’m signed up to see a physical therapist after Christmas and they want to talk to me first. Hmmmm…sounds interesting.

I spent the last hour going through medical paperwork for my neurologist appointment on Wednesday. This feels like my last gasp attempt at getting IVIg in Utah. I am both hopeful and terrified.

It was REALLY depressing going through doctor and hospital paperwork for the last couple of years. It seems unbelievable that so much has happened to me. I sure will be glad if my belly wound ever heals shut! This poor old body is beat up.

Wow, that was weird. The doctor doing the back pain study called me after 11 PM and made an appointment to see me Thursday. He was excited that someone answered his email and was awake. If they accept me in the study, I get $20 for cooperating πŸ˜€ Gee, I’m glad I took the nap.

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What a dopey day!

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Valium makes it possible for me to sleep, so that’s about the only thing I am good for. My brain cells are very much on vacation. I had two naps today. I am still tired. It’s better than being in the horrific pain I WAS in!

Myasthenia gravis is not impressed with Valium. It makes gravity be turned up. I feel like I weigh a bazillion pounds. If I don’t stop swelling up, I am going to weigh that much! When I wake up, I have to peel myself off the mattress. It’s a humongous struggle to get up from either lying down or sitting. I was hoping I might get used to being a druggie so the effect on MG would lessen. When these pills are used up, I hope my hip and leg are better so I can do without the drugs. But…it sure has been WONDERFUL to be in less pain! Interesting that Valium works better than narcotics on my pain. I think my muscles have been spasming way too long. Thank goodness for this intervention.

Oh, speaking of interventions, the care coordinator wrote twice today. She outright lied πŸ˜• Claimed she never said I was part of any mental health program. Sigh… I am putting her on hold until I talk to my regular counselor about my concerns. The whole reason I went to these people was to be treated well by doctors. Sadly, mental issues seem to be a reason to discount valid physical problems. Instead of educating the ER doc who told me I had Munchausens, now a doctor that didn’t think I was crazy is wondering if I am, and why I need a keeper! I asked this woman NOT to come to my neurologist appointment. A lot is riding on this appointment. If this doctor doesn’t help me, I need to seriously think about fleeing Utah so I can go back to getting regular IVIgs. Sooooo many of my problems disappear with IVIg. I don’t want to keep being this sick and disabled when there is a known treatment that helps me.

The chills and fever cycles are getting more intense. Again πŸ˜• I thought I was freezing tonight and then I went out to get my mail. Then I realized my skin was hot. Duh. Tricks me all the time. I look like heck. I look old and sick. Maybe I am trying to fight off all the community germs in this building. An awful lot of people are sick or just getting over something. It seems to wipe out folks for a week or more.

I learned something new about Facebook. I didn’t know I still had an “other” folder for messages while using my cellphone. I found it today at the bottom of a page that required 2 clicks. Now I feel really bad about all the messages I missed in the last year. Some were very heartfelt. Sorry. I only use FB to be on support groups and see what my daughter is doing. I never liked the whole friending thing. My newsfeed is mostly national parks and random photographers. I hide most people. I would rather exchange emails if folks have something to say.

Wendysuewyatt@gmail.com

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Wish List

Sorry. How embarrassing! Apparently the link didn’t work for anybody but me.

Wendy Wyatt’s Wish List
Link: http://www.amazon.com/registry/wishlist/1SMA98ILNZ8CT

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Oh….darn it!

I woke up at 3:33 with a super sore throat. I figured it was from almost being comatose. I took Valium, Mestinon and Motrin together at 11 PM. I remember nothing. I probably snored or otherwise left my mouth open even when attached to my CPAP and oxygen. That happens sometimes with deep sleep. While sitting there downing water, another blood test popped up online. My ferritin is 13 with normal being 18-340. Insert a bad word here. I doubled my ferritin after the blood transfusion June 6th. Now I am back down to the pits πŸ˜•

I just woke up again at 6 AM. I took my meds, but can barely keep my eyes open. I still have a lot of sleep to catch up on.

Gosh, it must be the weekend to shop for Christmas presents. I got several emails asking about my wish list. Well, if you are so inclined, here it is.
amazon Wish List

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Blood test results

I woke up at 3 AM on Sunday, writhing around in pain. There was an email saying blood test results were available. The worst ones are Iron S/P at 24 with normal 30-160. Transferrin saturation 7 with normal 20-50. Hemoglobin is 10.2 with normal 12-15. I guess he didn’t do a ferritin this time. The last ones were 12 and 23, with normal 18-340.

Low transferrin saturation increases the chance of death by 200%. Nice.

It seems like every part of my body is lacking something or is broken or damaged in some way. I feel like I am held together with duct tape and twine, cobbled together enough to keep going, but about to disintegrate. I am soooooo tired of being sick and in pain!

I woke up for real Sunday morning feeling yucky. I wish there was some way to escape from feeling like I have the flu 24/7. Feeling that way for weeks, months and years on end gets really old. Sooooo queasy!

The care coordinator never got back to me. She’s the one who told me to send her an email after my last doctor appointment, so she was expecting one. If we don’t clarify things, there’s no way I want her at my next doc appointment on Wednesday!

Each time I get my hopes up that somebody, somewhere is going to help me, it hasn’t been working out. What’s up with Utah? When I was treated for mixed connective tissue disease and myasthenia gravis, my life was more livable. Now I just get sicker and sicker and add new problems. Never have I had to endure such paralyzation and indecision by doctors. Here, each one is waiting for the next one to do something. No ONE doctor is where the buck stops. This is stupid! It’s a great business model for the system, though. Lots of tests and visits in perpetuity without ever having to actually work or take responsibility. I have never been so cynical about “health care”. πŸ˜•

It’s finally snowing. Almost all fall, we have had day after day of 50’s and 60’s. The ski areas have been sobbing and even regular folks have been getting grouchy, wanting snow so it feels like Christmas. Bah, humbug! I like the mild weather πŸ˜€ It snowed in the middle of the night, melted some and now has few and far between flakes that aren’t sticking.

I went back to bed this afternoon and by the time I woke up, there was no trace of snow. I took out the garbage and recycling right when GIGANTIC snowflakes came down. Within moments of coming back in the building, it quit snowing. It was magical πŸ˜€

Then, two men from my ward showed up to give me a blessing. It was a long blessing and I noticed it never mentioned getting better. Oh, well. The best part is feeling that God knows me and cares about me. God is with me no matter what I go through.

I was thinking maybe my hip wouldn’t hurt so bad tonight. Ha ha ha. Oh, well.

For breakfast I had 3 rounds of fried polenta with avocado and a mix of fake crab, cream cheese, sour cream and cheddar that was nuked for 2 1/2 minutes. I slept through lunch. For supper I had 2 steamed artichokes dipped in sriracha mayo with lemon juice.

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Back in September I bought a 2 1/2 pound frozen block of fake crab for $7.59 at the Chinese market….and promptly felt too queasy to even think of eating it. I guess I am finally in the mood. So far I have had five meals including crab, and I have a few more to go. Next time I will buy a smaller chunk. Once it’s thawed, it has to be consumed. Crab overdose.

OK, so I got hungry for the lunch I missed. I nuked some bacon bits, crumbled up some crab, cut up an avocado, drizzled on some sriracha mayo with lemon and added freshly ground salt and pepper. Excellent πŸ˜€

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Mmmmm…..crabby…..

You know what worries me? My entire left side is still swollen up. The back of my head is still only swollen on the left side. Until lately, I didn’t even know it was possible. In the past, that part of my head always swelled up on both sides…evenly and at the same time. My left foot and leg are shiny and swollen tight. Does that mean there is something stuck in my left hip that is causing those things? Kinda creepy!

Bedtime so I don’t have to think about it!

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Nostalgia

Today (Friday) I spent a lot of time thinking about my travels all over North America. I also thought about all of the places I have lived and the jobs I had, the colleges I have attended, the friends and lovers…and most of all my daughter. Wow! I have been there and done that πŸ˜ƒ

I have had an interesting life. Some stuff was difficult, some fun. I have learned a lot. I am sooooooo grateful that much of my life has been lived in forests and fields, near ponds, lakes, rivers and creeks. I know the hush of deep snow and the squeak of below zero. I have hacked ice to get my daily water and cultivated the earth to grow my food. I know the soft sounds of chickens in their coop and the raucous honking of geese informing me of visitors.

I have thrown my body down on grass and pine needles and sand and moss. I woke up to sunrises in the desert, the woods, the Grand Canyon and by the ocean in Florida.

I traveled by foot and bike and canoes and rafts and skis and RV’s. There were planes, trains, buses and boats. I have driven all sorts of motorcycles, cars, trucks and vans, I hitchhiked across the country many times and I picked up all the interesting people with their thumb out.

I sewed and knitted and painted. There was quilling and batik and pottery and macrame. I built things, I tore down things.

I loved my daughter with all my heart and soul. We went on adventures, we read books, we fought and we hugged. We sang and we laughed and we talked.

And the food I have cooked! Shrimp right out of the Gulf, lamb from the Navajo, mac and cheese on the tailgate, treats from the dumpster and lobsters from Maine. We bought cherries in Montana, tamales in California, tropical fruits in the Keys, cane syrup in Georgia and boiled peanuts in the panhandle of Florida.

There have been a zillion highlights and thanks to the passage of time, I have forgotten most of the trauma.

I loved to sew crazy quilts. My life has been like a crazy quilt…a riot of colors and shapes and textures.

Today I got a bit melancholy. I miss road trips and camping! Will I ever be strong enough to drive again? Will I ever camp again? I don’t know.

I am grateful I boldly followed my passions while I could. I am glad I crammed so much LIFE in my life.

This being sick all the time is frustrating! My whole life I was a leader. Now I feel kinda lost. I want to change things up. I want and need a new focus. I pray that God uses me and prompts me to take the correct fork in the road. If I am supposed to stay still, I pray for the strength to accept that.

I didn’t take a Valium last night. I slept well, but today (Saturday) my leg/hips/spine hurt like heck and are having muscle spasms. I don’t like the woozy feeling I get from Valium, but it does appear to help my muscles and skeleton. I slept a couple of hours this afternoon and woke up with deep hip/leg pain. I tried to sit in my very UNcomfy chair and gave in and took a Valium. I guess those joints and muscles need persuasion to relax.

Olive was happy today. Three people have come to visit. She rubbed all over them and flitted from place to place.

This morning, in the pouring rain, I went to FNB. I only went because one of the guys said it was a big haul. It was in the Boing! House, so one of the residents came out, got my bags, and filled them. He put them on the back of my powerchair and I zoomed home, getting soaked despite my big umbrella. Unpacking was an adventure since I had no idea what was being picked out for me. Figures, I got two bags of fruits and veggies yesterday and some of the same things today. I gave the three small, round loaves of bread to my neighbor for the birds. I’m set with fruits and veggies! For breakfast I mixed the FNB antipasto with cucumber, halved cherry tomatoes and fake crab.

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I had the chills from 11 AM to 9 PM. Then I spent an hour burning up. Finally I am the right temperature!

Here’s to a good night’s sleep for all!!!!!!!!!!!!!!!!

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Ha!

After 7 hours of chills on Thursday, I instantly switched to burning up with profuse sweating. I don’t often randomly sweat when awake. I have had to towel dry my hair several times and can feel sweat trickling down my head and neck. I was wearing a polar fleece robe, and now just undergarments. I turned the heat off when this first started. That fever sure broke dramatically! I feel better already. I think part of this is from all the time I spent under fluorescent lights Sunday through Wednesday. I have been quite hot and red. πŸ”₯

Getting cooler made me hungry. After 9 PM, I made polenta with red onion, crimini mushrooms, jalapeΓ±o and cream of chicken soup.

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I am still thinking about that care coordinator. I found her job description posted online September 29th.

Case Manager – Care Transition Coordinator

Are you dedicated to enhancing the lives of our elderly population? *** is seeking a full-time Case Manager with expertise in the medical field. This position involves specializing in working with the aging population and physical healthcare. Excellent benefits package included. Qualifications : Case Managers Certification or the ability to get one within 30 days of hire 2+ years experience in behavioral health field Experience working with elderly population and physical healthcare preferred. Responsibilities : Improve care transitions by providing patient and caregivers with tools and support to encourage them to more actively participate in the transition from hospital to home and engage in continued access to care. Use of Care Transitions model based on evidence based practice model which includes medication self management, patient centered personal record, primary care and specialist follow-up and knowledge of β€œred flags” warning symptoms or signs of an indicative or worsening condition.

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I found this online. It must be what the transitional program is based on.

http://www.caretransitions.org/four_pillars.asp

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I wrote this email to the care coordinator. I hope it’s considered clear, concise and polite.

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I feel like I need to know more about the transitional program.

I didn’t expect it to be announced to all my doctors that I am in some sort of transitional program through * Mental Health. As far as I know, I don’t even have a mental health diagnosis.

I would like clarification of what the program is all about, what your role is and what you expect from me.

I’m not thrilled about some of what went on Wednesday. I am looking for someone to help me navigate through the health care process. Until you get to know me and my challenges, it seems premature to make assumptions about me, especially in front of health care providers.

I feel like I need more information to feel comfortable with this process.

I came to *** of my own volition. I am a capable adult. I expect to be treated with kindness and respect in a collaborative relationship.

I hope we can work out the details so I can feel good about being part of this.

Wendy Wyatt

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Whew! I feel better after getting that off my chest. I am rather burned out on “helping professionals”. It would be nice if they actually helped! I realize I am either the first or one of her first clients in this new program. If we are not equals, I have no desire to be part of this relationship.

SCORE! I found this woman’s rΓ©sumΓ© online. It explains a lot. She greatly exaggerated some of her past jobs to me, and she graduated from the university related to the hospital. I am trying to not lose all respect for her. The job she emphasized, she only had for 10 months in 2010. She had long gaps between jobs and she went from social work to a job at a 2 bit college being an admissions representative before taking the job she has now. Hmmmm….so many red flags on her part! ⚠️

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Whoa. Some guy on TV just said “money is only paper”. I had to cultivate that attitude when I lost thousands of dollars on the Florida “husband”. It must be nice not to count every penny and carefully ration it out. This time of the year is the hardest to be poor. They are always talking about presents and food on the TV news. I am soooooo tired of hearing about holiday parties and shopping trips. It’s like rubbing it in my face that I don’t have money or much of a social life. I am too young for the senior citizens center. Here in the apartment building there are movies on Wednesdays and bingo on Fridays. I have zero interest in that. Oh well. I’d rather pet the cat.

On all of my support groups, women are stressed out because they don’t have enough strength and energy to decorate the house and cook treats and buy presents. I am glad I don’t feel that stress. I am sad that for what seems to be the majority of people, the holidays are not all that fun.

I went over to DI right at 10 AM again. I splurged a few bucks on kid toys. I very much enjoy the leisurely hunt for special things for the grandsons.

By around noon, I was feeling wiped out. I slept 5 hours πŸ˜€ Dang! It’s wonderful to be able to sleep again! Within minutes of waking up, there was a knock on my door. It was the girl who came here and played the clarinet this summer. She brought me two bags of fruits and vegetables. Yes! I am psyched to eat the broccoli tomorrow. That was so sweet! πŸ˜€ The bummer was that my voice was broken. You’d think after the nap, it might work.

I am still tired. I guess I really do have to catch up on all the sleep I have missed the last couple of weeks.

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My brain is struggling mightily to stay sharp and focused. If you see my brain cells running around loose, please send them home.

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