It’s no secret that I am an oddball. What’s scary is that I am getting odder. West Nile Virus changed my brain. It has been more than 3 years and the damage is ongoing. Then there are always new things from chronic illness in general and meds I have to take. I refuse most pain meds. I don’t like the side effects. Pain is preferable most of the time…..unless I just had an operation or something super-acute is happening.
People with my neurological problems all seem to take the same stuff. Gabapentin, Cymbalta or Lyrica, narcotics/opiods. Been there, done that, don’t want to do it again. I am now remembering the miracle and bad stuff about high doses of steroids. And darn those antibiotics!!!! I need them, but we don’t get along very well.
Most of my life I have had allergies. What might just be annoying to some, makes me very sick…..like cigarette smoke, chemicals, pollens, smog, etc. My lungs and guts have always been my weakest spots. Some of my most prized possessions are my salt lamps. They do a fairly decent job of clearing the air 🙂 I also love my fans! There is one each in the bedroom, living room and bathroom that are going 24/7. Usually the bathroom exhaust fan is also on. I turned it off for awhile Friday….and soon the bathroom had filled with cigarette smoke 😦
I tend to buy products that aren’t strong smelling. I have had way too many asthma attacks from chemical fragrances. All my life, if I walk in a store with tires, or down the detergent aisle, my lymph nodes instantly swell up. The ones in my neck and jaw are the most reactive. It gets hard to breathe and swallow.
After all these years, the products I choose to buy are second nature. I don’t think about them much. Last year someone sent me cheap dryer sheets that gave me several asthma attacks. I finally got smart and put them on the free table. Friday I was given some household supplies/chemicals. My neck feels like a chipmunk 😦 I forgot how allergic I am to this stuff. On one hand, I am grateful that people are thinking of me and want to be nice. On the other hand, it’s torture.
Here I go again…..please do not give me things that I don’t specifically need or want. I suppose I come across as being a snob because I only want certain sorts/brands of products. But truthfully, I would rather have nothing than to have things in this apartment that cause me distress. Right now I am very distressed.
I try to minimize carbs in what I eat. Every time I get baked goods from the free table, I feel guilty. My blood sugar is way too high. But…..sometimes I am so queasy that I crave something like pretzels or toast to calm my stomach. I try not to spend much money on carbs. I try to spend my limited food dollars on fresh fruits and vegetables, meats, dairy and condiments. I get canned stuff from the food bank. I generally don’t eat stuff from bags and boxes. I often wish I had chicken soup, though, as that’s something easy to fix and slurp when queasy. I never buy any. I wish the food bank gave us stuff we liked or wanted. I think I have 8 boxes of cream of chicken soup in the cupboard. I have a plethora of tuna, too. I tend to put the food bank cans on the shelf and only eat them as a last resort.
As I have said many times before, I am in no danger of starving to death or having empty cupboards. I have a ton of dried beans and other things that the government commodity program thinks I should eat. Definitely last resort food…..but it’s there, just in case. I typically get 8 or so cans of food such as fruits, beans, corn, tomatoes, tuna or salmon. They also sometimes add giant bags of dried cranberries or raisins to the food boxes. If I ate all the foods from the food bank, I would be way worse diabetic than I already am. It’s a common lament in this building because most people both have diabetes and get the boxes full of carbs. The boxes become more of a burden than a blessing.
A mystery person with MG sent me a necklace a few months ago. I don’t wear jewelry. I looked up the cost and it was around $40. I cried. That much money would have bought me a new skirt or some chicken noodle soup. I don’t know how to stop people from wasting money on me. There’s a secret sister thing on the MG support groups. I don’t sign up because I don’t have the money to send presents. Sometimes people are “angels” and send their MG sisters presents even if they are not signed up. In an effort to stop people from randomly sending things, I put this under my name in the wishes file.
If you really want to send me something, I prefer practical over gifty things. I don’t want to own anything I don’t actually need. When I need stuff, I put it on my Amazon wish list. If it’s not on the list, I probably don’t need anything right now. It’s very kind of folks to think of me. Just call me a minimalist. Really, thank you for caring 🙂
Who ever thought it would be such a burden to get presents? I feel like such a heel. I am constantly trying to pare down what I own. It’s amazing how fast a small apartment can overflow. There’s not much storage space. Plenty for what I need, but not enough for stuff I don’t need or want.
If you have been reading this blog long, you might remember the canned tomato incident. After the hysterectomy, I could not bear the taste or sight of tomato soup or tomato/spaghetti sauce. I just kept being given more in my monthly food box and I did not want it. Each time I opened the cupboard, hoping for chicken noodle soup, I saw the danged tomato stuff. I would start to barf. Just seeing the stuff was grossing me out. I felt sooooooooooo guilty for not being grateful, but I finally packed it all up and took it to the free table. It was a humongous relief!
I didn’t used to be like this. But I am now. I am in the strange position of not being able to afford good, fresh food, but am innundated by pantry items I don’t want. Scarcity among plenty. Right now I am stressing because I am too queasy to eat up my fresh foods in a timely manner! I sure am stressing about everything. I guess I hate it when I don’t have choices. I like some things to be up to me.
It pains me to keep writing this sort of post. I know that people who give me things, do it out of love, caring and concern. I, of course, am very, very touched that I am cared about. Really, I am! I just don’t want random stuff. I want to leave Utah, not stay. I don’t want my cupboards full of any more random free food. If I have a choice in the matter, I would rather have a bag of fresh veggies than a case of cans and boxes. PLEASE don’t send me stuff!
A very nice lady sent me some random things from Amazon a couple of months ago. It broke my heart that the money was wasted on me. I took 90% of the stuff to the free table. Then yesterday, another extremely nice woman sent me random stuff.
Amazon should be shot for how they sent it!!! Food and non-food, breakable and unbreakable items were all jumbled together loosely. A big jug of detergent leaked, things got broken, food got smashed. And the kicker was that I neither needed nor wanted most of what showed up. That kills me! I have to be mean and tell the senders that….and then I have to deal with the mess and moving junk around. I get to cry because I am an ungrateful bitch and the nice people get to feel like crap because they thought they were being nice….but thanks to my big mouth, they found out all the money was wasted 😦
I don’t know what’s worse….sitting here alone and poor….or sitting here poor but surrounded by random stuff I don’t need or want. Oooops! I know the answer. I’d rather skip the stuff. You have all seen pics of me. I am NOT starving!
It’s very different being cash poor in the US, than being poverty stricken in some third world country. If a person knows where to look, there is always free food to be had. The biggest problem is that it’s not necessarily healthy….but a body won’t starve. Because we have zoning and building codes and all sorts of laws like that, if we have housing, it’s generally expensive, but adequate. I have fans, I have A/C, I have running water and a functioning bathroom. My healthcare is hard to get, but eventually I get help from somewhere, somehow. Not always what I need, when I need it, but I am still alive. Thanks to thrift stores, I have a TV, a microwave, a vacuum cleaner, etc…..all for less than $10 each. Sometimes large sized clothes even end up at thrift stores 🙂
I am reasonably intelligent and frugal. I still have enough working brain cells to get things done on my good days. Luckily I eventually find a day with enough strength to shop or get my haircut from time to time. Nothing is easy, but I am managing. Do I wish it was easier? All the time! But somehow I have made it to almost 60 years old 🙂
I am having a tough time today. The fever is back. I feel yucky! Good thing I switched to sticky rice so I would quit aspirating rice when I eat. Today I made the last of my sticky rice with pork stirred in, veggies steamed on top and the last of my pb/coconut milk sauce over that. I am shaking a great deal from no more prednisone. The veggies shook off my fork, but the rice, for the most part, made it from plate to mouth without shaking off 🙂 See….I can almost feed myself correctly.
I am sooooooooo mad at Amazon! Yesterday I got a box with liquid laundry detergent leaking. It got on other things in the box. It soaked into the box, it oozed onto the counter, it dripped as I took it to the shower, it oozed all night and the smell made me miserable. I decided to toss it. I washed off the bottle, the shower and me several times. It sloughed off a layer of skin on my hands and it stinks! My lymphs are swollen like rocks. I have had to wipe down the counter, my walker and the bathroom numerous times because somehow the darn stuff has gotten on anything it even remotely got near. I now officially hate liquid laundry soap 😦 And I have choice words to say to whoever at Amazon packed that box! I still need to take out the garbage and recycling. The packaging stinks. I have spent all my energy today schlepping around the things touched by laundry detergent and things I don’t want. Yes, I am crazy and mad!
I started thinking I should not still be this crazy from prednisone. I read up on doxycycline. I found a bunch of people who said it makes them cry and have mood swings. Then I discovered another woman MG’er who had the same week as me….CT scan and contrast, premeds and doxycycline. She wondered why she was dreaming of murdering people. I was able to tell her it’s “normal” under the conditions of our last few days. As usual, it’s good to know it’s not just me!
The last month or so has been pretty rough with the infections and fevers and weakness and healthcare challenges. It wears me out! So today I got a wonderful letter from Paratransit. They weren’t impressed by the letter from my doc asking for unconditional rides for me. It says “eligibility for Paratransit service is not based on your disability”. They say I am functionally able to travel. Sigh……and I thought I was the crazy one. Could someone snap their fingers and make me always functionally able? That would be a great gift! 🙂