I didn’t realize my cellphone bill made a difference. I used to pay $45.77/month for my cellphone plan with “unlimited” text, talk and data. When my phone got stolen, I switched to internet for $50.68/month. Well, turns out my cellphone bill is a legitimate expense and internet isn’t when it comes to SNAP eligibility.

Then my rent went up from $515 to $525. My rent is 72% of my disability income.

Now my SNAP (food stamps) has gone down to $91/month from $101. That means I only have 97 cents per meal to spend on food.

I lost $24.91 per month. $10 more rent and $10 less SNAP, $4.91 more for internet.

And I was just lamenting that I chose to buy food this week with cash….and now can’t afford a haircut. Things are already precariously tight and difficult. Each time the pool of resources shrinks, I wonder what the heck I am going to do?

There are millions more like me out there. Sigh…. How are all the other people doing it? It’s not just food being hard to afford, it’s everything. I haven’t bought a new pair of shoes since 2010. I have been wearing the same pair of white Birkenstocks since then. They are falling apart. Two years ago I saved a little money each month until I could buy my coat. I love my purple coat 🙂 I really need more skirts. All of them have holes. I lucked out finding 7 shirts last year at DI for $28! I cycle through them between laundry lady visits. I just bought 2 tops and 2 bottoms of my undergarments for $4.75 each. They are sooooooo much more comfortable! I need to get more.

I was taking special supplements….like garlic oil for WNV, vitamin E because the doc said so, cinnamon pills for diabetes and calcium for bones. I guess I will drop those. I need vitamin D, stool softeners, probiotics and cherry pills more. I can beg for just so much.

Then there are the things like toilet paper, kleenexes, garbage bags, diswasher pods, dish soap, cleaners, etc that I need regularly. The laundry cost is $10 for each time she does it, plus about $10 in quarters for the machines, plus laundry soap and dryer sheets. I try to only need my laundry done once a month because I just can’t afford more than that.

I have an $8 TV and get free antenna TV programs. The internet is my almost constant companion. I cannot imagine life without it. I have a free phone with something like 250 minutes/month. I hate talking on the phone, so I never use many minutes. I don’t go to anything that costs money…like movies or concerts. Even if they were free, I am too sick to go. My public transportation is free if I go on TRAX or the bus. If I were to go on Paratransit, it would be $4 each way. I cannot afford that.

I used to get fairly decent food from FNB. That is getting sketchier by the day. I probably end up throwing out half of what I get, because it’s rotten. I get a monthly box from the food bank that is delivered right to my apartment building. Most of what they give out is not what I would choose to eat. I am diabetic. I just cannot chow down on all those free carbs. I already eat way too many carbs because they are free.

My counselor came to visit today. It rained while he was here. I am soooooo glad he has switched from seeing me at his office to coming to my place. This way I don’t have to trek over in my power chair during all sorts of weather. Geeze! When he got here, the clouds hanging over the Wasatch Mountains were pitch black. Lots of thunder and lightning was going on, but the worst part of the storm stayed on the other side of the mountains.

I get my counselor to reassure me each time that he does not think I have conversion disorder or any other mental illness. He and my GP doc are adamant that I don’t. I am still shook up about the evil insurance/hospital system trying to undiagnose my MG and instead label me with conversion disorder. Here I was feeling sorry for all the Utah women it had been done to, not knowing I was next. Sigh….

Writing that made me realize that nowadays my world is pretty small. I go a block to the doctor and my counselor comes to me. Sure makes my life easier 🙂 Once a month I go up to Huntsman Cancer hospital to get my port flushed, but I try hard to avoid the big, bad hospital. I am overdue for my mammogram, but that’s at Huntsman, too. I hated being shuffled from specialist to specialist at the big hospital. Lots of time and money, but the buck never stops…..it’s an endless round of “maybe this”, “maybe that”. And much of what they have said was later either ignored or proved wrong. It’s a lot easier to be miserable at home than miserable in the healthcare morass. My internist doesn’t even notice that I am missing….and he is one of the good guys. I am just an insurance card #, I am only a whole person at the GP’s office.

I have to say I am disgusted with the voice docs. Today my voice is working again because my fever has come down. I still have a fever, but it’s not so intense. My belly is still intensely hot, though. Whenever there’s an infection, my MG gets worse. It’s textbook. Last night the night sweats kept me soaked. I hope that means I am getting better!

My next door neighbor moves away on Sunday. Here’s hoping it will be my turn to move someday soon.

Could you hear me scream just now? I got up to pee and discovered I am bleeding vaginally again. Since I had a complete hysterectomy, the only guess I have is the colon to vagina fistula is acting up. Well, that would explain the fever and the hot belly. At this point, they say there is nothing to be done that won’t kill me. As usual, I have no idea what to do or who to talk to. The GYN said he couldn’t do anything last time when it was worse. Two times ago the gut doctor said the same thing. What was it? 80% chance of dying if they operate?

Yup….it’s my lot in life to grin and bear it, whether it’s money or health.

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