Wendy The Wanderer

Stories Of My Life

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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The Pied Piper

Interesting. Sometimes people want what I have. You just never know how you influence others.

I don’t think of myself as a very good example. I am often sick and confused and without funds. Turns out, those things are felt or experienced by the very people that seem fine and not under stress. I guess what makes me different is that I openly talk about it and am always trying to figure out what to do next.

I had a long conversation last night with someone who thinks I am brave. Ha ha ha ha. I don’t know if I am brave or just too clueless to be totally discouraged.

I have told countless people how to track down free food. I talk openly about going to see a shrink. I went to the shrink because I was so beaten down by the health care system, NOT because I was brave. But now several people think of me as the bravest one around!

Then there’s my faith in God. I have always had faith. So far, no matter what happens, my firm foundation has pulled me through tough stuff. I am a child of God, and His Son died to atone for my sins. Of course I love and respect that! I might not be able to go to church or the temple as often as I like, but the desire is there and I live my life accordingly.

On pity party days, I see myself woefully short of dealing with my health, my finances and my religion. I guess that’s why I need friends and acquaintances.

Turns out people see things in me that I don’t. They see me smiling. They see me coping and sometimes they see me crying. I sure don’t feel inspirational, but just by being me and being open and vulnerable, I have made a difference!

There are people going back to church, going to free food events, sticking up for themselves at the doctor’s office and signing up for mental health appointments. They wanted to do these things, but were scared or felt stupid. Somehow watching me bumble my way through has given others confidence to do the same.

I don’t have to be good at any of this to be a positive influence. I just have to be me and be real. Perfection would actually cause folks to give up. Because I am not perfect, but keep plugging along, that behavior helps others. So cool!

That’s kind of a breakthrough for me. I was too afraid of not being perfect. And since humans will never be perfect, I felt like my usefulness was limited. Turns out God uses us just the way we are. I feel better already 😀

The weather forecast is on. They say 50% of the country is covered in snow. We are so spoiled here! Yesterday was sunny and 40′s. Today is expected to be 45 degrees. No snow here in the valley. The first ski area opened in the mountains yesterday. The rest open this weekend. We haven’t had any accumulation down here. I don’t miss the lake effect snow I grew up with!

There’s still no word from my missing doctor. My newest worry is my left thigh. In my sleep, I thought it was a blood clot. The pain woke me up for a few seconds, many times during the night. I don’t know what it is, but it hurts deep down in my thigh. Geeze. I can’t keep track of all the owies.

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Last night I put the new plush blanket on the couch, in case Olive wanted to cuddle up with it. In the early morning I found her with her zebra blanket. After noon she had switched 😀

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Being a hermit

The only time I talked to a human today was when my neighbor knocked on my door to see if I wanted to go to FNB. Nope! They probably forgot who I am by now. It’s just too far and too much effort when I feel this sick. Lately I throw out way more food than I actually eat. Just looking at food starts me retching.

The chills and pain got so bad that I went back to bed and slept 3 or 4 hours. Olive woke me up by poking at my butt. I have no idea what she was really doing. It felt like she was running in circles. She seems to enjoy creative new ways to make sure I take my meds on time.

This evening I had creepy chills. Every time I yawned or moved the slightest bit, I was covered in goosebumps. I had the heat turned on full blast, too! 90-something percent of the time, I don’t have the heat on. Even with lows in the teens, I leave my bedroom window open a crack. But…one or so times a day. I get violent chills, so I turn up the thermostat. The heat never stays on long and then I go into the fever phase.

While writing that, there was a commotion in the hallway. I threw my poncho over my jammies and decided to get my mail. My hallway was full of various conversations going on. I talked to several people, got my junk mail and took a quick spin around the parking lot to cool down. Felt good. Tomorrow we will have a temperature inversion with stinky air. Bummer.

Ha ha ha ha. I dropped my blanket on the floor while I drank a mug of hot chocolate. Went to pick it up and the blanket was in use.

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I don’t know what I heard on the news, but it made me think about my reality. No matter how many times I talk about how little money I have, most people don’t really get it. Very few people truly live on the edge. It’s a national pastime to complain how things cost too much or how broke individuals or families feel, but few people are really lacking basics.

We need food, shelter, clothing. People forget that cooking cheap foods from scratch, drinking tap water, having clothes appropriate for the weather and having a spot to sleep is very far from what most people expect or want. There is usually a HUGE difference between needs and wants. You need water to drink…not beer or wine or soda or juice. You need a protected place to sleep…you don’t need cable TV or electronic devices or new furniture or granite countertops or decorations, etc. You need enough covering your body to be legal in public and comfortable according to the weather. You don’t need new stuff or fashion or many outfits or specialized clothes for each activity. Most people totally confuse needs and wants. Also, many people buy things even though they don’t have actual money to pay for it. That’s why most Americans have so much debt.

I live in luxury compared to homeless, unemployed folks. There is sooooo much the average person takes for granted.

We are in the time of year when suddenly being kind to the poor is trendy. Life is tough all year, then boom! Lots of news stories about giving poor kids coats, turkeys delivered to families, dinners for the indigent, visitors to nursing homes.

I loathe all the Christmas present hype. People don’t hope for gifts, they tell each other what to buy. I know ads are meant to promote spending, but geeze! The people with money, or more likely credit, go nuts lavishing junk on each other. Their homes are crammed full of possessions that get in the way and need storage solutions. Most people don’t have a clue what they own.

When I go to DI, I read all the writing in gift books. The presents are often given as obligations, then become an obligation in their new home. Stuff is shuffled around until a move or a death. Then it’s dumped in the garbage or donated to a thrift store.

When people in this apartment building die or move to a care home, a huge percentage of the stuff hauled out is unread books, clothes with tags and unopened craft supplies. What a waste!

Obviously most people are getting stuff not because they NEED it for daily living, but to fulfill some unmet emotional need. I am soooooooooooo tired of hearing people complain about how poor they are while going out to eat, driving new cars, buying fashionably new clothes, drinking alcohol, smoking cigarettes or doing drugs. That’s not being poor, that’s making poor choices. This time of year always brings out these feelings in me.

I suppose if I turned off the news and ads and spent more time being a hermit during the commercialized holidays, I would have less reason to be a curmudgeon. I never seem to turn off my mind and ignore the irritations. Yup, I am far from perfect.

I want to be surrounded by people and actions that inspire me. Darn. I guess I need to start with me.

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Results are in

There is 2 mm retrolisthesis of C3 and C4 with degenerative disc space narrowing and posterior endplate spurring at every level below C2/C3 and above C7/T1. The most pronounced posterior endplate spurring is evident at C4/C5 and C5/C6. There
is a mild convex-left lateral curvature with mild multilevel facet arthropathy. Uncovertebral arthritis is worst at C5/C6 bilaterally. No fractures are shown. The atlantoaxial and craniocervical alignment are normal.

Those are different words than before. No idea what it all actually means.

I woke up at 2:30 AM, soaked to the bone in night sweats. I had to towel dry my hair. It’s always amazing to me how much better I feel after intense night sweats. I can walk and move around better.

This was just posted on one of my groups…..
Fact of the day: Myasthenia Gravis is considered a rare disease. A rare disease is classified as any disease that currently has under 200,000 people.

Depends on who you believe, but the number I see most often is about 35,000 folks with MG. That gives new meaning to rare. No wonder most doctors are so clueless!

Dang. Now that I have been awake for half an hour, the euphoria is gone. I feel real sick and my head hurts bad. Boo hiss! And my guts are queasy. Ick.

Now it’s real morning and I still feel icky. But wow! The day is looking gorgeous. I looked at my calendar and was very happy to see I have no appointments for the rest of the month, except Thanksgiving dinner. Still waiting for my doctor to return. My shrink was joking around and asked if he had Ebola. The clinic I go to is full of newly arrived Africans who need interpreters. Lots of signs all around asking if patients have been to Africa in the last three weeks. Hmmmm…hadn’t thought of that. I wonder at what point I should give up and go to the ER for a CT scan? I hope my doc is OK.

I am having bad chills already this morning. That’s not usual for me. Normally the chills wait until afternoon.

Here’s something chillier than me. Ice crystals at Glacier National Park. The pic was on their FB page.

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Those darn collar bones

This afternoon I had my counseling appointment. My voice worked!!! I took a shower, got dressed, gathered up garbage and recycling and went out. I was sooooo short of breath! Saw my favorite old guy and went over to say hi. That’s when I first realized my voice worked. I expected it to fade away, but it didn’t! YES!!!!!!

I told my shrink about the young woman with MG who was (falsely) labeled with conversion disorder. My counselor thinks we should start a group malpractice suit against the neuro and hospital.

On a more positive note, the counselor thinks I am a very resilient person with a good sense of humor, great strength and faith. When he said I was like Job in the Bible, I didn’t know whether to laugh or cry. That’s what Rhett always said about me.

An hour goes way too fast. When I put on my coat, I realized my collar bones hurt like heck again. Also my neck and back of my head. When I got home, I poked along the collar bones. The lymphs were all swollen. A lymph poke on my left collar bone caused my arm to do that weird muscle flutter with electric shocks. Hmmmmm….so is my problem swollen lymphs or a pinched neck? Or both? This is getting interesting and complex….just like ALL my health issues. The stupid swollen lymphs in my neck are making swallowing painful 😕

My appointment was at 4:30. By the time I came home, it was dark out 😯 It was scary crossing roads in the dark. Several near misses by people not expecting a wheelchair when they turned right on red. I am going to add some lights to my wish list! I don’t ever want to go through that again. Yikes!

My head and my lower back have weird pains. The aftermath of going a few blocks and talking for an hour aren’t very nice. Mestinon and Motrin aren’t helping. I had extra cold chills, now extra hot fever. It doesn’t take much to tick off my body. Back to rest, rest and more rest….

Here’s my philosophy of fixing objects

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Excellent Sunday nap

I was miserable from the myriad of problems Sunday morning. If I could have just snapped my fingers and been transported to the hospital, I would have gone. When I couldn’t bear another moment of pain, I went back to bed. I slept four whole hours 😊 It was fantastic! I woke up because the guy upstairs was thumping things around.

For a while, I felt much better. But, then the misery hit again. Same old stuff I have been writing about. Then chills and fever and gut distress. I might as well live in the bathroom. Now it’s evening and I wish I could go back to sleep, but I am not tired. Sigh… At least when I get flat, there is a lot less abdominal pain.

I eventually went to bed. Had a fitful time thanks to night sweats.Olive woke me up to take meds by bopping the CPAP hose against my nose with her paw. When I opened my eyes, she was staring down and meowing . How did I ever survive without a cat???

Monday, so far, has been more of the same. My chest hurts more than usual. When I move around, I am very SOB. It’s afternoon and still no email or call from my doctor. I feel yucky. This whole health care thing continues to be a nightmare. Never did get the promised paperwork from the insurance company, either.

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Itching and sweating

That pretty much sums up my life, other than the many trips to the bathroom.

Something has changed. The itching also feels like burning. At night, the sweats are keeping me marinated and damp. When I wake up, the skin in my fat folds is bright red. I take showers, I put tea tree and lavender on it and now I am trying bag balm. The rash doesn’t want to give up. I took Diflucan a week or so ago. Gahhhhh!!!!

The itching and the rashes are not the same thing at all. The itchiness is all over and random. I can’t emphasize enough how awful the itching is! It gets worse and worse all day, then at night it becomes unbearable. The only thing I can do is go to sleep. Even then, it wakes me up. Last night each time I woke up was from choking and simultaneously I was wicked bad itchy, plus the rash hurt plus I was soaked. It’s a big deal to sleep three whole hours straight. Then when I sit up, the nausea takes over.

This afternoon my left arm was itchy. With an open hand, I rubbed back and forth and frightening amounts of dead skin went flying. Gross!

I went to bed because of the itching and a new pain. Woke up three hours later when a fire truck and ambulance screamed by my window. I stuck my head out into the hallway. Yup, my old next door neighbor again. She goes at least weekly.

I believe I have a new fistula. I already have one from colon to bladder. Now I think that one or a new one has attached to my vagina. That would explain the blood 2 weeks in a row and now the newest symptoms. I have pee and air coming out of the wrong place. It also hurts and stings.

My intestines and what’s left of my pelvic organs are acting like baby zucchinis in the garden. When the squash are near each other, sometimes they knit together and become one. My intestines are misbehaving pretty bad in the last year. It’s all the aftermath of a hysterectomy. I soooo don’t want to end up in the ER with this 😕 Unfortunately I might. It seems to be getting worse fast. I have been realizing something strange was going on for days. Sigh….

I don’t know how I am still alive and kicking with all this stuff going on! It’s not unusual to have one or two concurrent health issues, but this is ridiculous.

I did have something nice happen! There was a knock on the door in the afternoon. It was the mailman with a package for me. The return address said it was from an MG Secret Sister. Every month, two of the MG groups I am part of do this thing where someone assigns participants a secret sister. Each person buys something and sends a gift box. I don’t participate because it’s $25 and shipping. I got what’s called an angel gift. Someone decided to send me something even though I didn’t sign up. It’s a very soft and nice throw blanket for when I am sitting in my comfy chair 😊 Wasn’t that nice?

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I feel like a lady finger again

Do you know what a lady finger is? It’s a rather bland sort of cake like pastry. Its main purpose seems to be a bit of structure in a dessert that will soak up tasty flavorings.

Well, I keep feeling a wooziness pour over me. Kind of like a lady finger in Tiramisu. Somebody is pouring alcohol over me. My head gets numb, my ears ring. At first I just feel strange and then it soaks all the way in. The wooziness in my head flows down to my arms and guts and legs. Pretty soon I am in a very creepy stupor.

I have no idea what is hitting me. Blood sugar? Blood pressure? Pure weakness? Heart stuff? It does make my heart beat weird. At some point, the ringing becomes silence. I can’t quite hear things around me. It’s like going down a tunnel or falling in a well. I hate the sensation of falling or spiraling down. I am close to fainting. I very slowly come out of it, but feel like the stuffing is knocked out of me. My vision gets even blurrier, my muscles twitch. Eventually I realize I am holding my whole body in a clench. I have to consciously relax. That’s kind of scary because relaxing sometimes brings the whole thing back. What the heck is going on????? My heart has to work hard to make me feel alive and alert again. It feels like if I relax my body too much, I will die. Then, inevitably I have diarrhea.

I looked up panic or anxiety attacks. That’s not it. I don’t feel scared or anxious before it starts. Instead, I rather calmly sit there and analyze it. Reminds me of my strokes. I was fascinated by what was happening to me, but realized it wasn’t good. The feeling of doom comes later.

For the last few days, I have to make sure I am holding onto something when I dry my face. The brief loss of vision makes me fall. I also have accidentally shut my eyes while standing and taking meds. I immediately fall like a rock. This happens when my MG is in tough shape. It’s something neurological. I think it’s all related to dysautonomia….something I just don’t want to deal with. Sigh….

Around 1 PM, I decided to go shopping. The hour by hour forecast was way wrong. I got rained on. Our temps rose all day. It was 48 degrees when I went out. Good thing I brought my umbrella. I first got a much needed haircut. Then I went to Rancho Market.
I bought 10 red and white onions for $1.92. I figure they should last a few days 😊

Until today, I hadn’t bought much this month. $4.50 on kid stuff at DI, $2.69 for fries and $26 for doctor and medicine copays. That’s it. I almost forgot how to shop 😉 The meds are easy. The pharmacy delivers right to my door. I have had 4 deliveries in November. I almost fell on the poor guy today. I opened the door and my eyes were rolling around like a ride at the fair. I wonder if he thinks I’m drunk or high? I hate that people think that!

How can so many places itch so bad all at once? This morning I accidentally ripped off a patch of skin. Tonight my fingernails cut into my skin. Last night my thumb was bleeding and wouldn’t stop. I don’t feel very good 😦 It sure was a PITA to go from shivering to sweating in a few minutes. I have been having some doozy shooting pains. Maybe I should just give up and go to bed. I can’t take much more!

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It’s baaaaaaaack!

Oh, how quickly I forget. I don’t even remember when it went away. I woke up with my tongue all swollen and sore. I guess it went with my other weakness and the difficulty talking and breathing. Bummer 😕

I really, really want to go buy some groceries today. I just went a whole week with no eggs or onions. The last time I bought those things was October 28th. I got up early and took a shower. Now all I need is energy. Ha ha ha ha!

I also have to hound the radiology department about getting my CT scan. This is ridiculous.

I am SOOOOOOOOOOOOOOOOO pissed off!!!!!!!!!!!!!!!!!!!!!!!!!

I called the clinic and asked if my doctor has been gone. Yup…ever since I saw him! That’s why my tests haven’t popped up and why no one has OK’d the CT scan without contrast, or if I get contrast, I have to be premedicated with Benadryl and prednisone. Other doctors in the office have been asked to sign off on it, but they refused. I have suffered all this week with incredible pain, chills, fever, night sweats, weakness, breathing problems, loss of voice, etc because of these idiots! Over and over and over again, the health care system has been paralyzed while I suffer. I sat here day after day in a daze, hardly able to move. I am boiling mad!!!!

It’s obvious I have an infection that’s getting worse. This whole ordeal sucks big time!

Yes, I am madder than I have been in a long time!!!!!!!!!!!!!

Crap. You should hear me wheeze as I slowly exhale. It sounds like a police siren. At first I couldn’t believe it was coming from me. We are back in nasty temperature inversion season. The air is gross! I turned up the TV sound real loud. I can’t drown out the weird noises coming from my lungs.

I need to do something physical before I explode. Not easy since just sitting here feels like a work out.

I need to learn tact!

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