Wednesday I never unloaded the dishwasher and therefore never put dirty dishes in it. Thanks to the crockpot, there’s a big pile in the sink. I just didn’t have enough strength. When I went to bed, I felt guilty. I am rarely a slob like that.
I just woke up after 4 AM, dripping in night sweats. Really dripping! Even with the walker, I could barely make it to the bathroom. Soooooooooooo weak! I am only overdue for Mestinon and Motrin by half an hour. I felt feverish all day yesterday. I feel AWFUL right now 😦 What the heck???? I wasn’t just lazy yesterday, something was brewing. I am scared to get up and go back to bed. I don’t want to fall.
It’s an unusual night if I don’t have night sweats, but it’s also unusual to wake up dripping. The obnoxious, yet beloved sweats started in my 20’s and continue even now, well past menopause. Without night sweats, my lymphs stay swollen and my joints swell up and stay that way. I am uncomfortable with or without the sweats.
More and more, I look forward to my perfected, resurrected body. An eternity of NO PAIN!!!!!! It’s hard to imagine the absence of pain, but I know I am going to like it 🙂
Went back to bed and woke up with a start at 10:34 AM. Took a very quick shower, threw on clothes and raced out the door. I made it to the park before 11 🙂
I feel overwhelmed. I don’t have enough strength to do the dishes or clean the floor or cut up watermelons or cook a meal. I was struggling to breathe at the park. Got home and my friend met me in the lobby. I could barely talk. Tears stream out of my eyes, but I am not crying. There are elephants on my chest and I am still feverish. If I don’t sit very, very still, I feel like I am going to suffocate.
Wrote that and the stupid insurance social worker called. Her voice irritates me. Her demeanor irritates me. I have no clue what her purpose in life is. Whatever it is, she is not employed to help me. I told her that I thought the people who denied my IVIg belong in hell. She tried saying more smarmy, insincere stuff. I told her bullshit and hung up on her. I have had it with life sucking leeches who are only concerned with saving money by denying my treatment. I wonder what they are going to do to me now? Have me locked up for being an ingrate?
I wish I could go far, far away NOW! I am glad I am developing a plan. There is light at the end of the tunnel and it’s not a freight train, right?????
Well, I finally got it. A “Notice of Action for Denied Services”. It says a consensus of my doctors has deemed that IVIg is not medically necessary. What a load of crap. All my doctors, with the exception of the first idiot neurologist that I saw in Utah, want me on IVIg. The neuro opthalmologist who prescribed it has fought hard for me. Of course the letter is dated July 21 and I got it on the 29th. Took a long time to go 4 miles, huh? It says I must appeal within 30 calendar days from the 21st. This came from my insurance company’s Utilization Management Medical Director.
Now the question is…fight or flee this state? I have to go to a website and print out an appeal form. Sure, my cellphone does that! Sigh…
I haven’t done much in days. Mostly I sit in my apartment, struggling to breathe. As each awful thing has happened to me in Utah, it just gets to be part of my background. Being sicker and weaker without IVIg, being dizzy and ditzy from WNV, lupus flare-ups from heat and sun, lipodermatosclerosis, the hole in my belly, the huge hernia, the rectocele and cystocele, arthritis all over, holes in my intestines, the fistulas, edema, anemia, repeated infections, spinal degeneration, partially collapsed lungs, asthma…and on and on and on. Nothing really goes away. I just add it to how I feel. I endure and I adjust. And then I wonder why I feel like crap every day!!!????!!!!!
I wrote down a list of docs I have seen in their offices in the last two years. It’s more than 30. Add the ones I have seen in the hospital and it’s more than double that number. Do I feel jerked around? You betcha! Most of the time anything done to actually help me only came about after multiple ER and doc visits for the same issue. I had to tell the docs to test me for WNV. I had to keep insisting I had belly infections. I had to quit breathing to get help. I had to defy ER personnel to be seen for both the incision and intestinal infections. I had to insist on a blood transfusion. It has been nothing but a fight. I am sooooo worn out 😦 What good are all those blood tests and X-rays, CTs, MRIs, etc if they don’t ACT on the information? It has been both criminal and shameful. It would have been way cheaper and easier to just give me the IVIgs from the start. I wouldn’t have all this permanent damage. These are large corporations using me for their gain. It has very little to do with making me better 😦 On the other hand, one of the manufacturers of IVIg calls at least weekly to offer to try to help me get IVIg. I am just a pawn for both sides.
OK, I just got back from talking to the manager. I told him I would like to move to the PNW. He signed me up for senior housing info from there. I called the apartment I would most like to live in and requested an application. The waiting list is 6 months to a year. It sure would be nice to only spend 30% of my income on rent!
Ah ha ha ha ha! The group that helps find senior housing was all syrupy sweet until they found out I am low income. Then she couldn’t wait to hang up. I am glad I already called the place I was interested in. I am sure the company gets a sizable kickback from the more posh places.
Now to figure out the logistics. I also need to do all the things that I can around SLC while I still can. I would love to see the zoo 🙂 Heck, 2 years and I have never been in the museum two blocks from here. I am glad I have made it to Temple Square several times. I wish I could spend more time in buildings. I would like to go to the family history library some more.
Interesting that one of the blog readers said I needed a ride to the PNW like a dog gets rescued…passed from person to person for each leg of the trip. The manager suggested the same thing 🙂
If I move to a studio apartment, I won’t need much. That’s OK, I don’t have much. If I gave away the clothes I have outgrown, the food storage I have amassed thanks to the free table, half my books, etc, what needs to go isn’t much at all.
So, the most excitement today was making a phone call and eating. I had a bowl of crockpot beef and a gluten free blueberry muffin for breakfast. I started the beef at 2 AM. By lunch I still had almost no strength. I decided to have a bowl of tomato basil soup from a can that I adorned with Parmesan cheese and freshly ground pepper. I got the can from FNB and it was way past the expiration date. I ate these crunchy things with the soup. Not bad! I would never buy something like that. Sometimes FNB food is a pleasant surprise 🙂 For supper I had 2 artichokes dipped in mayo with a fresh squeezed lime and sriracha sauce. Almost everything I ate today was courtesy of FNB. Thank you!!!
It rained hard here all morning. Then it stopped about 10 AM. I went to FNB with my umbrella. Good thing. It rained again right up until it was time to go through the food line, when the rain stopped 🙂 Then I made it home about 5 minutes before big, dark clouds came along and a downpour ensued. Now there’s thunder and lightning 😮
Strange selection of food today. I got apple-beet fruit leather. The turkey wrap sounded good until I got home and looked closer. Mold.
I was all excited about moving to the PNW, then got my bubble burst this afternoon. I am trying to get excited again.
Researching is tough because my phone is on throttled speed. I try to open a page, set the phone down and come back 5 minutes later. I wish I could live somewhere with free wifi or have enough income left over to afford internet. I tried using the library wifi today. It’s pathetic. I suppose I should make an appointment to have my port flushed at the hospital. They have good A/C and blazing fast wifi 🙂
It has been a fairly uneventful day. Not too sick, not too healthy. Lots of pain. Not much happening. I guess what I ate today was about as exciting as it gets. Breakfast was onion, zucchini, jalapeño, sweet potato, cut up meatballs, Romano and eggs.
Supper was the turkey wrap minus the mold, with cottage cheese and cranberry sauce.
I already found out I can’t eat even a tiny bit of water spinach. Now I know that regular old spinach is a bad idea, too.
I had 5 oz of spinach in a salad with bacon bits, onion, avocado, tomatoes, fresh bread cubes, mayo and sour cream. Then I had a slightly different salad with 5 more oz of spinach today. My guts are very unhappy 😦 I have been glued to the bathroom for hours. I felt hot, so searched for the missing thermometer. I am at 100.3, and that’s about 3 hours after 800mg of Motrin. The fistulas are painful 😦 I sure hope I am not getting any new intestinal holes!
I have been going through mental gymnastics today. The air here sucks. Almost every day has crummy air quality. If I can’t breathe, I can’t be alive.
One year Heather worked for the Student Conservation Association at Glacier National Park. I drove her there from Vermont. Then I drove up the the very NW corner of Washington. I loved it! I was impressed by Port Angeles and Port Townsend, Washington.
I keep notebooks of places I might want to move to. Today I added those two cities and started lists of pros and cons. It’s basically just a fantasy game. I can’t afford to go anywhere. I would like to live closer to Portland, Oregon than I am now. The cost of living in Portland is very high. The metro area has more than 2 million people. Some real estate page on the internet claims the value of Portland houses has increased 13% in the last year. Not conducive to living on $721/month.
There are several senior/disabled buildings on the Olympic peninsula that charge 30% of income for rent. Right now I am paying 71% of income for rent. I looked up air quality statistics and it was in the 90% or better range. Cost of living is 25% less than Portland. Washington has dental benefits. Who knows my chances of getting IVIg? At least I could breathe. It precipitates about 140 days/year. Rarely very cold. 4″ of snow a year. 10-25″ of rain between Port Townsend and Port Angeles. There’s public transportation. Port Townsend has a yuppy food co-op and a branch of Goddard College. I graduated from Goddard. Sounds like a PNW version of Vermont 🙂 They do have fog and gray skies.
My mind felt more alive while thinking about moving, my body just wants to continue sitting very still right now. There are LDS churches and a temple is about 40 miles away from Port Townsend. There are hospitals and clinics all around, with big deal hospitals in Seattle.
(Monday) I woke up at 4:30AM to take meds. I would love to go back to bed but am sooooo queasy! Last night and this morning there has been some sort of sickly sweet smoke in my apartment. I have repeatedly gotten up to look out the windows, but haven’t seen any people out there. It’s reminding me of the nasty smell in the Adirondacks. It started out sickly sweet last night and today smells like very stinky cat litter. My gums get numb and I want to barf. I have no clue where it’s coming from. Yuck!!!! And speaking of yuck, I woke up with even more sores in my mouth.
I decided to take out the garbage and recycling so I could try to figure out where the smoke is coming from. My hallway is absolutely disgusting 😦 There are a couple of new tenants in my hall and they must both smoke. There must be 4-6 smokers in my hallway. Gross. I still can’t figure out where the sickly sweet smell is coming from. The skies were looking like a storm was imminent. We are supposed to get rain the next two days.
One great thing about Washington is the apartments do not allow smoking 🙂 I wonder how well that’s enforced? I don’t want to spend what’s left of my life moving from place to place trying to find breathable air.
So, how can I make this happen? The biggest reasons I am still here are that I never want to be homeless again and that I can’t afford to leave. In the past I financed my moves by going homeless for awhile so I could spend that money on moving. I am just plain too old and too sick for that strategy any more.
I went back to bed and slept until almost 2PM. Woke up to the smoke in here again. Grrrrrr……
My belly is absolutely humongous today. Guess what that means? The incision had been healing and now it split open again. Almost 14 months of a hole in my belly 😦 I feel really yucky.
At least researching possibilities gives me something positive to focus on. Most of what I think about day to day is how to survive the next day, week or month. Trying to get food, going to doctors, fighting for IVIg and decent medical care, it gets old. I want more. Getting my teeth fixed is a really big deal. I have several cavities along with broken and chipped teeth. Vermont and New York provided dental care. Utah doesn’t and so far the church hasn’t helped me, either. For me, living in Utah is like living in a third world country. Economic status means everything here, and I am at the bottom of the barrel. Time to go back to a society that cares more. I am tired of hearing how caring this place is. Most people are busy patting themselves on the back while stomping on the less fortunate. Reading comments on Utah news stories is an education in hate. I am tired of being hated for being sick, which causes me to be low income. No matter where I move I will face some of that, but Utah SHOULD be a place of love and compassion. It’s interesting that the PNW has the highest rate of people who are atheists or not affiliated with a church, but they take better care of the vulnerable. Yup, this whole experience has been educational.
I spent my whole life trying to help myself by having a homestead or gardens, trying to move around to find a healthy spot, using a service dog, then a wheelchair. I seek out good deals, I go to the park for free food. No matter how sick I am, I am always trying to DO something to improve my life. Sometimes my choices are good, sometimes not, but I never stop trying.
I have been near death’s door so many times. So far, each time, I have found a way to get better, get help and keep pushing forward. I feel like right now I am treading water. That’s better than drowning. Now I want to do more than barely survive. I am ready to try something new. What I am doing now isn’t working for me.
Lots of soul searching, planning, dreaming and action to come….
Of course it’s important. Now I will have to see more docs 😦 I already knew I had severe spinal stenosis. None of my docs ever talk about it, so I don’t think about it. I sure know my spine hurts, though.
Tonight my spine was crunching and making my legs give out. The more my spine hurt and did weird things, the less I could breathe. I decided to start Googling for info. Many of the things I have complained about lately are most likely from my spinal stenosis getting worse.
Great. Another thing that might kill me. I have quite a collection.
This is from April last year.
“The CT scan says severe endplate sclerosis in L2-L3. The MRI says severe bilateral foraminal stenosis in C4-C5”. I have other bad spine stuff, too, but I need to look it up. Sigh….
Squishing C4-C5 affects….
C4 Diaphragm; a muscle below your rib cage important to breathing
C5 Deltoids; shoulder muscles
T spine problems with breathing are even worse 😮
My breathing sucks. The not being able to breathe while standing is terrifying. I don’t even begin to know how to separate out the asthma, allergies, COPD, MG, lupus, bad SLC air, WNV and squished spine reasons for my breathing problems!
Today is scary. I woke up numb. When I stand up, I immediately begin to black out. My chest hurts and I am extremely SOB. It’s another one of those days that I have to sit very still to keep from setting the whole thing off.
Do you ever notice the joint that goes down the middle of your chest? Mine has sharp pain 24/7. Then there is a muscle spot between the collar bone and breast that aches fiercely 24/7. This isn’t new, it’s been happening for as many years as I can remember. When the elephants sit on my chest, they make those places extra painful. Today I feel like my chest is going to explode. That, in turn, gives me a horrible headache. All that makes me even weaker than I usually am. It’s not easy to endure all this.
Earlier, an ambulance and fire truck were here. They went upstairs. No idea who they took this time. The ambulance showed up first, then the firemen. The fire truck came in the wrong driveway and blocked in the ambulance. It was like watching the Keystone cops as they prepared to leave. Geeze.
I keep catching the cops out of the corner of my eye. When the parking garage is otherwise empty, they sit on the second level, taking pictures and doing some sort of surveillance. I keep hoping they will stop the drug trafficking here! Sooooooo many creepy people coming and going who don’t live here 😦
As if I didn’t have enough pressing things to worry about, I keep trying to figure out how and why WNV has made everything so much worse. This was interesting. My lipase was 1901 the first time I went to the ER with what I would later discover was WNV.
For breakfast I had a salad that used up some of the things thanks to FNB like the cherry tomatoes, fresh mozzarella and last of the salad dressing made from blue cheese I got from them. I also added half an avocado, half a white onion, some Parmesan cheese and LOTS of freshly ground black pepper.
Spinach often makes my mouth feel weird, but today I got red marks that look and feel like paper cuts. It also made the lining of my mouth swell up.
Is there ANYTHING I can do without pain??????? It gets sooooooo old!
Last night, after I got home from Ogden, I had a heck of a time making something quick for supper. Each time I stood up, my spine pain was excruciating. I couldn’t breathe while standing. If I bent in half, with my arms on the counter, I could breathe. When I stood straight, I couldn’t. I don’t think it was just the immense pain, it was more than that. Somehow my spine stuff was turning off my ability to breathe in and out. Scary!!! I soon went to bed so I could suck down oxygen and use my CPAP. I slept solidly for 5 hours, until I needed a bathroom break and another dose of Mestinon and Motrin. I love deep sleep 🙂
This morning I was way better than I thought I would be. I got antsy waiting for it to be time to leave for FNB, so went to the park early. I was struggling for breath in the apartment and figured there would be more oxygen in the shade of the trees in the park. The breeze was nice, too 🙂
We desperately need reliable people with cars that will commit to picking up expired foods from a store or stores one, two or three times a week. There’s plenty of food out there, but hardly anyone to go get it and bring it to the park. There’s never enough food to go around lately. There are more and more people showing up in line. I think the anarchists need help organizing. It’s a real bummer when nobody picks up food and we all go home empty handed. Stores want people to show up consistently.
I forgot to take a pic today. I got a chicken Caesar wrap, 2 small cheesecakes, cherry tomatoes, a zucchini, an apple and a cupcake. Here was my lunch 🙂
We (my next door neighbor, me and my weird friend) stopped to talk at the small park on the way home. It took about twice as long for my voice to give out and the gasping for breath to start. We came home and sat in the lobby, underneath the ceiling fan. The A/C felt soooooooo good! We sat there about two hours, right smack dab in the middle of everything. I wish there were more places with A/C and a fan!!! I perked up a lot 🙂
I ran out of all energy a few hours ago. All that talking wiped me out. Olive is tired, too.
9AM and it’s only 70 degrees. Nice 🙂 I turned off the A/C and opened the window. There is still a peculiar smell after all those people camped out. Makes me queasy, but so far no breathing issues.
I had an awful night. I never slept more than an hour or two at a time. Each time I woke up, it took a long time to fall back asleep. All my joints hurt, it was hard to breathe and that stupid buzzing, quivering, spasming thing was going on all over. I often wake up with numb arms and legs, but today they didn’t want to move. My fingers were so numb, they were stuck as claws. I feel like I have a hangover. My head is tender and my guts are very not happy.
I was hoping I would feel better over time, but it’s not happening. Ugh. I want to go someplace, anyplace away from here. I started pouring over my new maps and tourist info that I got while in Provo. What I REALLY want to do is visit a national forest. Cool air full of oxygen, a lake, river or creek. Ahhhh….that would be nice 🙂
I did it again. I started for Rancho Market. Instead of going there, I got off one stop sooner and rolled onto FrontRunner bound for Ogden. Again, I had no idea where I was going and had no food or water. Never did eat, drink or buy anything in Ogden. It was a fairly short trip. I went from the FrontRunner station, straight ahead until I was on the street with the newly rebuilt temple. I went all the way around the temple and went along what looked like the main drag. That’s when I saw OMG…Ogden Memorial Gardens. I saw a guy “rock climbing” on a building. After the gardens, I came out at an amphitheater. I sat in the shade, cooling down and went down 25th Street until I got to Union Station. I went around the side and the back, taking pictures of a train store and museum. I figure Ingrid and her family would like those pics 🙂 Then I went into the FrontRunner station to use the bathroom and collect bus schedules. Took the train back to SLC and got onto TRAX until the Rancho stop. Got a Vietnamese haircut, then spent $3.88 on avocados, tomatoes and onions. Came home and can barely move. I had a fever when I left home and am burning up even more now.
Now I will have to pay. I keep sticking my head in the sink to soak my hair in cold water. It dries in minutes. I am sitting in front of the fan on high. Humidity was down to 15%.
I needed to go back to Ogden. I had to face some demons. That’s what town Rhett and I stayed in when his oldest son got married. While going around the temple, I recognized the apartment his parents and aunt had lived in. I half hoped I might bump into Rhett in that town and was half scared to death that I would. I have no idea where he lives. I liked the OMG park. I didn’t find much to draw me to Ogden. I am glad I didn’t move there. I felt like I was supposed to move to Utah. Maybe someday the whole plan will become clear.
Or is that fight for food? I was on the wrong side of the food. The parade was between me and FNB in the park. That’s OK, I have plenty for now. The only thing critical is no avocados, no tomatoes and only half an onion left. Maybe those things will be at FNB on Saturday.
Last month I bought some burgers…chicken, turkey and beef. I am not impressed with the preformed hamburgers from Whole Foods. Those suckers are tough! So far I have had three of the chicken lime burgers from Trader Joes. I love those 🙂 Never had one before. At first I thought of them as too expensive, but they are 87 cents each. I get $1.05/meal to spend. As long as I get bread, fruit and veggies at FNB, that’s a good deal. I haven’t tried a turkey burger yet.
I don’t eat much meat. I would guess maybe 3 pounds a month? I miss when I was able to eat more. Now I eat way too much bread and other carbs.
Wow! The universe acts quickly! I wrote that, then went out to get the mail. The apartment building BBQ was going on. At first I wasn’t going to go. My two favorite old guys and my weird friend were sitting together at a table, so I went in. They said the food bank donated the meat. In that case, I intended to have some! I ate a bratwurst, then the BBQers brought in some STEAKS! I thought I had died and gone to heaven 🙂 I brought a steak and a brat back for dinner. Dang! It was good 🙂 I can feel my iron poor blood getting a little less tired! 🙂
I got so excited that I forgot my mail. Oooops! It didn’t take more than a few minutes of talking and I was gasping for breath. I wonder if the atelectasis will ever go away? Both of my lungs are still partially collapsed. That’s getting really old! Now my shoulder hurts when I breathe. Darn 😦 It’s all OK, though….I got to eat steak 🙂
I love nice people one or two at a time. I HATE being in or around crowds of strange people. It’s even worse after WNV. Too much movement overloads my senses. Add lots of noise, smoke and smells to that and I am an instant wreck.
All night long I woke up every two hours to pee. Each time, I looked out the window for a while. There were always dozens of people walking, biking and milling around for the entire night. There were also sirens and bullhorns and lots of emergency vehicle lights. I went out and took pictures around 8AM. Geeze! It’s a full scale invasion.
The parade started at 9. It got to our building about 9:45. I turned off the A/C, opened the windows and listened. I tried looking out the living room window, but don’t have enough strength to stand for long. So, I pulled my bed over to the bedroom window. It hurt too much to sit that way and within a couple of minutes, I was struggling to breathe. Nasty air! People stink. Motorcycles stink and make noise. Bah, humbug! I closed the windows, turned on the A/C and zoned out. Then I turned on the TV to channel surf. KSL didn’t have the Today Show, they had the parade!
I am even less impressed. I don’t feel social or cultural solidarity. Lots of meaningless glitter and glitz. The shows of force always bother me with motorcycle cop demonstrations and military vehicles. The only part I like is listening to the marching bands and seeing old timey pioneer stuff like handcarts. I am such a curmudgeon 😉 Even with the windows closed, the A/C is pulling in the outdoor stench. Yuck. No respite for my lungs. I hate cities 😦 I need a handicap accessible cabin in the deep woods.