Suelo is better at explaining how I think than I am.
Yesterday on the WNV group, someone asked if any of us have had trouble reading since gettng WNV. That would be me. It’s a huge comfort to know a few dozen people are struggling with the exact same issues as me. Often, a question about something simple will trigger a huge response. For the first couple of years after WNV, I really did not want to admit to a lot of my cognitive struggles. I used to be smart. I thought it would come back any minute now. Sigh…….
But on the flip side….I hate support groups. Someone will write in saying how bad they feel…..weak, drooped eyes, etc, etc. I feel all sorry for them and maybe relate a similar experience. Then the next post is about how they hiked 10 miles or went to the beach for hours or went out dancing and drinking all night. I feel duped….and pissed! Obviously their lives weren’t all that tough. Sigh…..
The one that got me today was a woman bitching about getting IVIg…..all the pain and inconvenience. I wish I was getting an IVIg today!!!!!!
Hmmmmmm…..my attitude sucks. Must be my empathy button is stuck on off.
I suppose a quadraplegic reading about me complaining how hard it is to cook, or shop or hobble to the bathroom is thinking shut up! I wish I could do those things! Sigh…..
I am never happy. Either my guts aren’t moving and I am miserable….or they are like today, and I have to go to the bathroom every hour or less, and I am miserable. All day today, I have either been crying or on the verge of tears. Do I still have enough hormones to be hormonal? Sure feels like it.
Last year I got on the FrontRunner train and explored Utah. I am still waiting for some energy to do that this year. The BEST news today is that the smoke is supposed to clear tomorrow!!!!! My ear drums have been swollen and aching all week. I hope there will be fewer allergens in the air. We still have very high weed pollen and high grass pollen. Sigh…..
So, I had been putting off 3 doc appointments. I called each one and now ended up with 3 appointments in one day. I will need a doc by the end of that day! :-p
You know what else ticks me off? I was reading the church paper and there was this article about being frugal. Every single thing listed would be extravagant for me. I have looked many times….I have never found a blog by someone who is disabled and with my income. I want to know how they do it! How does someone eat for 98 cents per meal? How do they get by with virtually no leftover money after expenses? I really, really want to know how other people do it.
The people here are not very good examples. I only know of a few people who live on my income. None of them pay what I do for rent. Most have been around SLC long enough to get “housing”. They only pay a third of their income. It’s up to about an 8 year wait for that. I know one guy with the same income, but he has a roommate. Even with 2 of them, they seem to specialize in not paying rent on time. They abuse substances and one of them keeps pawning his government funded new wheelchair. I see him gimping by my window and just shake my head.
Quite a few people buy most of their food at 7-11. A constant diet of pizza and hot dogs with chips and soda. Yuck! I watch those folks trudge by foot or zoom by in their chairs…..back and forth, numerous times a day. I would love to know someone who inspires me.
I guess it’s a bad mood, disgusted day. I took a nap this afternoon for a few hours. That helped a little. I still don’t feel well, though. Today I have done absolutely nothing useful…..for myself or anyone else. I would really like to be up-beat. My voice has been half broken. When people go by and yell hi, my voice keeps saying ha-eye. I get discouraged because so much in my life is either broken, or up in the air. I am still waiting for the judge’s IVIg ruling. I need a few things finalized so I can then move on to what’s next. I feel like I have been hanging in limbo with way too many things.
I don’t do well without a project to work towards. Watching and waiting makes me crazy.
Just for the heck of it, I looked around at various Craigslist cities to see how much a wheelchair accessible van would cost. OMG! Even old ones are pricey….like many thousands of dollars pricey….for a van a couple of decades old. I like to pretend that any day now I will be strong enough to drive and take off….far, far away from Utah healthcare. I need IVIg to feel OK. All my troubles seem like the same old vicious cycles as the other poor people around me. It’s a good thing that drugs and alcohol have no appeal to me. I can see how people fall into that trap to try to avoid feeling hopeless. In reality, that crap just makes it all more hopeless.
Sorry. I am not very inspirational at all.
Putting together the page about West Nile Virus was a marathon. I read every blog post from July to January more than once. Condensing it into a timeline was incredibly helpful to me. I was able to see my life unfolding….not knowing what was happening as it was happening….but making lots of sense when read as a story…..especially because of what I know today, three years later.
I am a lot tougher than I give myself credit for! I must have had some sort of superwoman complex. I was tired ALL the time. I was juggling many things while being wicked bad sick.
I was very excited to go visit my daughter and 2 grandbabies that December. I was weaker than even I imagined. I fell several times, I got a black eye. It was physically difficult. I was fighting having to use my walker. I was still on the edge between being able to wobbly walk and not walk for more than a few steps. I did not yet realize how disabled I was getting….and I did not want to face it!
There were lots of posts about church. Before WNV, I went to all 3 hours of church each Sunday that year, I went to the temple often and I enjoyed being both places. The sicker I got, the more often I made a spectacle of myself in church. I got sick from being there, I had medical mishaps, I had asthma attacks, I cried, I turned colors, I sweated, I sneezed, my eyes jiggled around…and none of that in moderation. People made comments, they worried, they looked horrified. Just reading how hard I tried to keep going to church and remembering how I felt, made me cry buckets. No wonder going to church has been so traumatic mentally and physically. I still have strong faith, but I do not like physically being there. It has been a long, long time since I could sit inside a building with other people. I can dart in and out of Temple Square….or a grocery store, but I can’t spend much time. Will I ever get better?
It was weird and sad to go from a fairly confident and gregarious person to a sick recluse. I cried for the confused person I was reading about :-( WNV wrecked my body and my brain. Each time I thought I was getting better, I got even sicker or crazier. I thought it would be over soon. Little did I know! Most medical people were nice to me. Others treated me poorly. My life feels like one battle after another. It has taken great strength to keep on keeping on.
I wrote the above earlier today. Then I sorted through all the clothes in my closet. I took most of what was in the closet over to DI and donated them. I took all the extra hangers and they went to the free table. Another ahhhhhhhhhh…..
Then I checked my mailbox. I just got a gut-busting, tear-inducing letter. A manager at the parent health care company of my neuro, just dumped me as a patient. Now I have no neurologist. The evil neuro told the judge that he was going to give my neuro “a talking to” for saying I have MG and prescribing IVIg. I guess it worked. That’s one way to get around the whole court and judge thing! The letter says I am too medically complicated and need to be seen by the big hospital and experts. Wow….that’s helpful…..NOT! I am still shocked at the expense, people hours and level of intimidation that has been used to influence what sort of healthcare I am allowed to access in Utah.
And I thought it was scary before! I am not doing as well on the new generic form of Mestinon Timespan and have nowhere to turn for help. Just great. My prediction is that next they will go after my internist again. They threatened his job for prescribing Mestinon last year. It should be interesting to see what the lawyers have to say about this tomorrow.
Can you guess where I don’t want to live? Apparently “they” win. My level of power, influence and wealth is like one person peeing on a raging wildfire to extinguish it. The game is rigged and I am insignificant. I would rather be me than them when the final judgement comes along. Way too many people do not feel responsible for what they did because it was “just business”. Remember Jesus in the temple with the money changers?
I wrote to one of my WNV groups and described how I felt with all the people, noise and movement from the parade. I got 16 responses saying that WNV left them feelig the same way. And then a couple of people said a curious thing. They feel like WNV is a lot like being autistic. Yup! The mild end of the spectrum….but very much the same. I have talked about Asperger’s a few times. Every sensory issue I had as a kid…and then some…has come back after WNV. I wonder how many times I have used the word “overwhelmed” since the stupid mosquito bit me? We all have a strange sort of anxiety we never felt before.
In my MG support groups, the subject of pain often comes up. It used to be widely believed….by doctors….that people with MG don’t feel pain. That always irks me. Finally the American Association of Electrodiagnostic Medicine surveyed actual MG patients and 50% said they had pain due to MG. Well, duh! When I struggle to breathe, my ribs hurt. When I am too weak to hold up my head, my neck hurts. When my eyes droop and I have double vision, I get very nauseous, my eyes hurt and I get a headache. When my arms and legs feel like someone attached lead weights, it hurts to lift up my hands and feet. If the muscles aren’t working right…they are weak….the weakness causes pain. BIG DUH!!!!!! So tired of idiot neuros who tell people they don’t have MG because they have pain! Hardly a week goes by that some woman is undiagnosed because of that. Grrrrrrrrrr…….of course, it’s always women :-(
And….one of the TV stations asked the question….what happens to all those parade floats? Some people said a part of them are recycled. One guy was very proud to say it was only meant to be used once and was going to the dump. When people have enough food, shelter, etc, they usually have no clue what the lives of the less fortunate are like. Makes me sick that all those hours and all that money…..most often raised by church wards or stakes, goes to stuff like this. I bet most kids would rather see real pioneer wagons, lots of horses and the simpler, older things. At least for me, I am tired of being glitzed out. Authentic things are more interesting. What if all those parts of the LDS church put that much money and effort into good food for the poor, dental care, medical care and other true and desperate needs in the community?
An article in the SL Trib says “For those who make floats, the parade is the culmination of more than eight months of work, Smith said. Stakes in The Church of Jesus Christ of Latter-day Saints are given a parade theme in October. This year, it was “Forging a New Frontier.” Then they draw up a plan and assemble a building and decorating team. In January, once they receive a float base, they spend the next four to six months completing it.” Geeze, reading that made me even more heart-sick :-(
I am glad it’s not just me who sees the whole thing as nuts. I like this story. Pioneer Day should reflect all of Utah’s people
Yes! What a waste of time! (And BS!) How about a real service project that actually HELPS others??? People will feel much more fulfilled when they do something useful. Deseret News story…Creating Days of ’47 parade float is ‘more about building people’
I am deeply disappointed in humans. There are real gems out there, though. Some people do good and help others. Imagine a world where we spent much of our life caring about others! I see so many people hurting financially, socially, physically and mentally.
The other day I was coming home from the grocery store. For the bazillionth time, I almost got hit at an intersection by a driver bent over their smart phone. I had started to cry behind my sunglasses. Some random man….probably homeless…..smiled with the biggest grin, said hi and complimented me on something or other. His smile made the whole world better at that moment :-) It doesn’t take money to make another person’s day. It just takes caring. If you have the means to help out temporally, so much the better.
At least Pie ’n’ Beer Day is honest about what it’s all about.
Olive does not approve of pie and beer. She would like some sour cream, though.
Are you going to share?
Mom made potato pancakes into potato waffles. One potato, part of an onion….put through the food processor. Add an egg, salt and pepper. Cook in waffle iron. Serve with sour cream and applesauce.
Seriously! Are you ignoring me!
I am cute and adorable! You cannot resist me!
Fine! I know there are cat treats in the suitcase.
While you are blogging, I think I will check this out.
Aha! I see a bag of cat treats!
If I look cute, can I have a treat?
I am not taking my eyes off the treats. I am trying to act cool and relaxed.
My patience is wearing thin.
Mom is reading this book to decide what to put in the suitcase. I know what to take out!
I got pics of the trucks, but I really wish I could have gotten a pic of the plane! A big plane went right overhead this apartment, while making a sharp turn and tipping its wings. Then it quickly dipped its wing low again and made a sharp turn to the airport, while at the center of downtown SLC. It sounded like it was going to crash or hit us. I could hear screams outside. It certainly seemed lower than allowed by law.
Earlier today, I saw 2 planes from my spot on my comfy chair. Both planes were lower than normal and quite close. They didn’t match and were going in opposite directions. Odd. Somehow the two plane incidents have to be related. I just can’t figure it out yet. Last year an old military B17 bomber did weird things like that. They came here to give vets rides. Maybe them again???
And what the heck is happening on the little stub road between the Department of Workforce Services and this building? There were 6 trucks out there. Not sure if they are messing with phone, electric, cable or what. The internet cable got wonky for awhile.
I talked to the manager today. He would only tell me that there was an “interesting situation” here last night when the cops were called. Oh! For the people who don’t read comments….4 cops were here last night around 11:30. Scared me when they looked in my window! I have no idea what was going on. Cops are often here. No end of creeptoids for cops to show up here for.
Those Medicaid stickers to take Paratransit to doc appointments have never showed up. I called back, she said she would reauthorize them and still no stickers. What else is new?
I got a notice from Amazon Associates. That got me curious. I used to have a blog that was special for promoting books and objects that I thought were important for homesteading, food storage and all that. Over a 4 year period, I made $62.38 :-) One of my favorite blogs makes well over $1000/month. It helps finance her RV adventures. I had forgotten all about my blog and the huge sum of money I made. That’s around 4 cents per day for me!
In the evening, I made a run to the nearby Asian market. Alas, no sesame balls. They usually only have them in the morning. I got some buns to steam. I decided to try something new to me….green onion steamed buns. $1.89 splurge. I do like scallion pancakes that look sort of the same. Now I just need to be hungry for them one of these days. Here, you can make your own steamed buns if you don’t have an Asian store a few blocks away.
As usual, I felt yucky all day, then a bit better in the early evening, then yucky again. What scares me the most is continued bleeding from that fistula. I am still alive and kicking, even though I am a wreck.
I hope I did a fairly decent job of helping my daughter understand how important it is to have PASSIONS. I have always believed that if you set your sights on something, you can make it HAPPEN. And….it’s easy to be against things, but what are you FOR? Anybody can dream, but it’s what you DO that matters.
I used to be fairly good at following my dreams. I made notebooks about what I wanted to happen, and it was amazing to me that once I had a path to follow, the universe opened up a way for it to come true.
I wanted a homestead, an organic farm, a functional house, I wanted to unschool my daughter, I wanted to travel, I wanted to find a spiritual path. As I focused on those things, they became real. I rarely deviated from my dreams. What I did each step of the way helped to make those dreams become reality. Once I put my intentions out into the world, people and experiences popped up to help me. It was as if the way was made easier just because I visualized it and believed it would happen.
Today I watched a movie that got me fired up again. It’s called The Secret. You can watch it free on hulu. http://www.hulu.com/watch/235701
Many times in my blog, I have lamented that I am lost. I don’t know what I want. That’s still true at this moment in time. I need to figure out again what my passion is. I need to find focus. Once my Vermont ex became my ex, I left the farm, my daughter grew up and moved on and my health deteriorated, I lost focus. I didn’t even know what to dream about. This has bugged me every day since then.
I have tried to find what excites me and what I want to work towards. The obvious for me has always been traveling and camping. That’s the direction my heart pulls me. But I let all the negatives bog me down. Now I find myself unable to drive, too poor to go anywhere and dependent on medical equipment, doctors and hospitals. Can I break free from that? I am sure I could if I made that my priority. My problem is that I have lost confidence in myself and my dreams. I have settled for the status quo because to change has become scary. I hardly recognize myself.
I need to Visualize. Believe. Expect it. Now that I have two days of Medrol in me, it’s easier to think. It’s easier to dream. I have the answers within myself. I need to look for them. I need to find Wendy again. I have been thinking about this more intensely for weeks. When the student is ready, the teacher appears.
I made a video today. I look and act different, huh? I wish I could just take steroids forever. Too bad it has so many bad side effects over time. There has GOT TO BE a way to treat my autoimmune and neuromuscular problems long term. Sorry the video is so jumpy. I was just too excited about being able to talk.
The big thrill today, besides talking, was the non-stop rain. We got about an inch here in the valley. There was snow in the mountains. High today was 51, but it was mostly 40’s. Back to 70’s on Monday. The trees and grass look obscenely green :-)
My life has been changing every few minutes today. It’s hard to keep up with it all. I saw the old guy GP early this morning. I took this video of me in the examination room while waiting for him.
Do I look and sound in good shape to you? The doc was not amused that I wasn’t helped in the ER. He prescribed another Medrol dosepack and is putting me on Methotrexate next week. He had to do blood tests first, to see how my liver is doing.
By the time I got home, there was a voicemail from my “good” neurologist. He said he was NOT the neurologist on call, it was his partner. According to an email from the neuro’s nurse, the partner told the ER doc “to evaluate breathing, weakness, condition, and if needed admission to the hospital or transfer to U of U. If still not feeling well please go to the U of U ER. You need to followed by U of U closely given the complexity of condition and symptoms”.
Ummmmm….it was that hospital where the first Utah neuro said I did not have MG and in their ER, the last 2 times I went in looking and sounding just like today, I was told it was a panic attack and the next time, Munchausen’s. Would YOU want to go back there? Too bad Saturday’s ER docs didn’t follow through with these instructions. It would have been better than nothing. Maybe?
So, the ER docs at Saturday’s hospital lied by telling me they had talked to my neurologist. No wonder the woman ER doc was confused! She had a hard time reconciling my MG crisis hospitalization with being told I don’t have MG. But who told her I don’t have MG? The first ER doc wanted to admit me, but her shift changed. The next ER doc told me there was nothing emergent wrong with me. He said other neuros had said I don’t have MG, so it was unlikely I have MG. None of them tested my breathing. After I was told to go, the nurse asked weren’t they going to give me an ECG? Then he said there were abnormalities. Then the ER doc said I was fine.
Are you confused yet? I wonder how many layers of staff each message went through? It was truly a game of telephone.
The good neuro’s nurse wrote a whole bunch of emails to me today. She said I need a SFEMG at the U. Luckily I wrote back and asked if I was the one who was supposed to call them! She said yes. All the U’s websites give the wrong # for neurology. I got Children’s Hospital. After being transferred to and fro, I finally got the right person. Of course none of these people could understand me on the phone. LOTS of repeating slowly and spelling things out. As if I wasn’t exhausted already! and the biggest kicker? I have been sending my neuro pics and videos for months. Today his nurse said they can’t watch the videos on their system. Uh, thanks for FINALLY letting me know! Gee, do you think that might be part of the reason nobody worried much about me?
Hmmmmmmm…..guess what? More changed medical records. The first neuro I saw there was the one who did no tests, read no records and decided I don’t have MG. I saw him twice. Then my surgeon got me in to see his friend, the neuro, even though it was against policy. Today’s scheduler says records don’t show the first neuro at all, instead it says I saw the second one 4 times. I only saw him once. What the heck???? The reason this is important today is because the neuro who specializes in CIDP and MG and who is qualified to do SFEMG tests, is new to me. That means switching again. The second neuro I saw and the one my current neuro wants me to see, have to discuss me and agree to have me change docs. The scheduler says she will call me back in a day or two. Arggggghhhhhhh!!!!!!!!
Meanwhile, the current good neuro’s nurse keeps sending me emails saying I should go to the U, be admitted and get the tests done in-patient ASAP if I am still struggling. I know from all the past attempts, the U’s ER would come up with some new mental illness to pin on me rather than treat my MG. The “good” neuro has no concept of what it’s like to be me at that institution. He thinks his colleagues will gladly accept that he “suspects” I have MG…..and prove it for him.
There are people in my MG support groups who have positive MG blood tests, but inconclusive or negative SFEMG’s. There are also folks the other way around. Either test should be enough. And there are all sorts of possible diagnostic tests. Just looking at the symptoms used to be enough. Now more and more docs want every lab test positive at the same moment in time. For most people, that doesn’t happen. At the real live meeting, it looked like at least half the people raised their hands when the facilitator asked how many folks were serronegative. Official statistics say 20% are…..or less. For years docs believed there was no pain associated with MG. I think it’s like 80% of MG’ers who say they have plenty of pain from weak muscles. Someone finally studied real people and discovered real pain. Imagine that! We got talking on one support group about how many people experience muscle difficulty with our peeing and pooping mechanisms. A whole slew of people said yes. Literature claims MG does not do that to us. And on and on it goes…..
I wish I could give every jerk doctor a month of my MG. That ought to change their perceptions :-)
Oh, my gosh! No new phone calls or emails for a whole hour. Whew.
So, to summarize, my new good neuro is still good. He had nothing to do with Saturday. He sounded surprised and apolgetic in his message. I need a very specialized test at the U. I have been on the waiting list for a month already. Sounds like they did nothing towards even scheduling it, let alone getting the test done.
The GP, with all of his years of doctoring, and wisdom gained from that, thinks the quagmire I am in is ridiculous. He thought I should have been on IVIg all along. He was willing to wade into the fray and try to save me. He prescribed what I needed.
I see the good neuro on Tuesday. Stay tuned for whatever the next plot twist is.
I slept 11 hours. That helped! I spent the whole day Sunday, resting. In the afternoon, my neighbor, the one who asks daily if I am going to die, came to visit. She wanted to pet Olive. It’s a joke between us. If I die, she gets Olive. And….Olive loves her and makes an idiot of herself, rubbing all over my neighbor and showing off. At one point the cat went in the bedroom and rolled in catnip until she was covered. What a druggie.
When my neighbor came in, I started talking to her. Then I realized I was TALKING to her :-) All that resting brought my voice back. After an hour of talking, I was telling her how I had to pry my lids open and tip back my head so I could see to sign paperwork in the hospital. I opened up my left eyelid as I said that. Within moments, my eye drooped closed, my mouth drooped and my voice got broken. About 5 minutes later, my voice came back as if nothing had happened.
I am getting better and better at feeling and understanding when my voice is going to give out or come back. The way I visualize it, my tongue slumps in my throat, then I can’t talk. Then, all of the sudden it feels like the lump of tongue straightens and smoothes out in my throat, and my voice works. That makes sense. Weak muscles slump on my eyes and mouth, why not my throat?
Saturday I did my stupid talking trick. I showed a few people how I can either tip my head back or pull my head up and my voice works for a few seconds. Unfortunately, it usually makes me wicked dizzy and eventually I start coughing. The weaker I am, the fewer words I get out before the bad stuff starts. But I still feel compelled to keep doing it….mostly because it’s cool!
My neighbor is a retired surgical nurse. I told her to be brutally honest with me. She has known me for 3 years now, but it has only been the last year that we have been becoming closer friends. We often go to FNB together. She has seen me go through a lot. I asked her if at any time she ever thought I was faking anything. She said no and went on and on about my face melting so many times as we talked and watching my eyes droop the weaker I got, and this happened week after week and month after month. No, I couldn’t possibly have faked any of it.
Right now I need to hear that assurance over and over and over again. How can I be in myasthenic crisis one month and then 83 days later, be undiagnosed yet again? 83 days is: 7,171,200 seconds, 119,520 minutes, 1992 hours or 11 weeks and 6 days. Some of those minutes I felt fantastic after IVIg, most of those minutes I was weak and struggling.
I re-read Saturday’s post. It’s scary how pathetic my writing is when I don’t feel well. It doesn’t make a whole lot of sense. Maybe today’s won’t when I read it the next day? I also realized I wrote more than this, but a couple of paragraphs are missing. Sigh…..
Another very exhausting night. Went to bed tired, woke up tired. Just took my last Medrol. Since the generic name for it is methylprednisolone, you can imagine it’s pretty much the same as prednisone. Here is a hilarious song about taking it.
I think it rained most of the night. I heard the sprinklers come on during the downpour. Way to waste precious water! Some places in Utah are under water restrictions. I have been disgusted by the squandering of water at this property ever since I moved here. The first year, we had a puddle with algae in it right in the curb cut to leave the front door. Not only was it stupid for wasting water, it was a falling danger on the slick slime.
I want my breakfast to just appear. I am hungry, but don’t have much strength. I need one of those things the Jetsons had.
I am surprised to see the skies have cleared. Later today, the word SNOW is in the forecast. This sure is crazy weather! We had a winter with almost no snow, then once it got hot and flowers are everywhere, the snow keeps showing up. Not to worry, though, back to 80’s in a few days. I am just waiting to see what the horizon looks like in an hour to decide if it’s a FNB day.
2 onion bagels, 3 white onions, greens, strawberries, 5 tomatoes, 2 peppers, 2 zucchinis, a half rotten cucumber and some spices for Indian curry. I was in the first half dozen people in line and went through twice. I wonder why less food is being picked up by FNB volunteers? These things are perfect for me, though.
It was rather nice. 50’s with a mix of sun and clouds. I needed my sunglasses. It always amuses me that I go out in a short sleeved shirt in this weather, while other folks are bundled up in down jackets, gloves and scarves.
I was in tons of pain while gone. It’s back! My head/neck/back swelling with pain has arrived on cue now that I am done with Medrol. It feels worse than ever. What the heck is causing it? The doc just said lupus, but that’s a pretty general statement. It’s cry-worthy. I also had a dozen or more major myoclonic jerks while waiting in line. Those things make every body part crunch from the sudden all over body jerk. They knock the breath right out of me. Tired of it! And today is like yesterday. I went to bed with a drooped eye and woke up with one. The left eye keeps shutting all the way….even in the nice, cool air :-(
Oh, I got yesterday’s mail today. There’s another bill from the hospital, asking for the same money my insurance company says I don’t have to pay. Sigh…..more phone calls.
I got very sleepy after my lunch of 2 artichokes. Slept more than 4 hours. Woke up to find Olive had pulled the artichoke parts from the garbage. I forgot she always does that. She never gets into any garbage but artichokes. When I woke up, all my ribs were sore from struggling to breathe in my sleep. When CPAP and oxygen aren’t enough, my MG is not doing well :-( Now that I am awake and sitting up, my neck/head/back hurts soooooooo much.
This endlessly fascinates me. Twice a day, when I take Miralax, I pour water in a small juice glass. Then I add about a tablespoon of cherry syrup, then I dump in a capful of Miralax. It separates into layers before I stir it. Cherry on the bottom, then Miralax, then water. It looks cool :-) The cherry syrup is awfully sweet, but it has done a good job of alleviating gout pain.
Ever read Post Secret? Why are so many people afraid to say what they think or be who they are? After my crappy childhood, I realized that secrets are evil. If things have to be kept a secret, they fester. There are secrets about abuse. Secrets about stupid things we have done. Secrets about money. Secrets about feelings. I just don’t keep secrets….don’t tell me yours if I am not allowed to talk about them. There’s a blog in my feed reader that makes no sense to me. The person sanitizes what they say so much, that there is no substance left. I don’t even know what they are talking about. Passion, people! Where’s your passion????? Don’t you get so excited you are bursting to say things? Just do it!
I thought it was temporary, but it’s getting worse. I don’t have enough strength to blow my nose or cough deeply. It’s as if some of my abdominal muscles, especially near my diaphragm, have become disconnected. It’s not just the breathing out, it’s the breathing in, too. I am shaking all over. It feels like MG weakness teaming up with functional problems thanks to the hernia. I have to very consciously try not to panic. It feels like I am suffocating.
Of all the days, I have an appointment with the voice doctor, today. Last time I saw him, I could talk too well :-) Now I don’t have enough strength or air to even be trying to talk. I wish this was neurologist day and not voice day!
So, I started reading my usual blogs this morning. One had a link about food stamps. It’s always the same old crap repeated over and over again. One paragraph says “Currently, a household of one can qualify for up to $194 dollars a month, or fewer than $7 dollars day, as part of SNAP, according to the Department of Agriculture. For a household of two, it’s roughly twice that. For a household of three, it’s about three times the amount.”
Notice that says UP TO $194/month for one person. I want to know how to get that much! I get $3.25/day from SNAP. And you know what else sucks? The manager says the rent is going up. I just love paying 72% of my income for rent :-) You would think there would be more money available through SNAP when most of my income goes to subsidized senior housing. NOPE! Yet the Republicans think I am living too well and want to cut back on food stamps. How about they look at real live people like me instead of making up stories?
And, in the article it says SNAP is doubled for two? On what planet? A single person gets $733/month SSI disability. A couple gets $1100 ($550 each). As a single I get $101 SNAP. A couple gets $17/month ($8.50 each) from SNAP. I am really tired of the spin put on news stories.
I am grouchy this morning. No eggs are left. Of course, I want to eat my usual vegetable egg scramble. Tough luck. I had ramen noodles, instead. I am hoping I have enough strength to stop at a store on my way home from the voice doc. The forecast is calling for thunderstorms around that time. I soooooooo don’t even want to go! There are no curb cuts on sidewalks out there. There’s a bus stop out front of this doc’s office, but no way for a wheelchair to get into it. There is no shelter where I have to wait for the bus at this end of the trip, either. Bah, humbug….
Yes, I feel very whiny. I am worn down from a zillion little problems.
It was nice to have a warm February :-) I would like to switch for summer. Let the east have record temps and the west have the coolness. We have snow in the forecast on Wednesday. It won’t amount to much. I hope it snows a lot up in the mountains. We need more moisture.
There are certain people who whine all the time, about every tidbit of their lives. Then there are others who minimize real pain and suffering and try to make everything sound great…when it isn’t. I fall somewhere between those two points, and must admit that already today, I have been annoyed by both camps. I looked up forced cheerfulness and found this study….
PEOPLE who smile a lot and say “have a nice day” are headed to an early grave while the grumpy stay fit.
Researchers at a German university – a land where surliness is an Olympic discipline -say enforced jolliness on the job is much more likely to make people fall ill.
They cite flight attendants, sales personnel, call centre operators, waiters and others in contact with the public for extended periods of time as being at risk of seriously harming their health.
Psychologists at Frankfurt University said the fake friendliness led to depression, stress and a lowering of the immune system itself, which in turn can trigger more serious ailments.
“Every time a person is forced to repress his true feelings there are negative consequences for his health,” said Professor Dieter Zapf, a researcher into human emotions.
Yes, this was Easter weekend, but I am not going to pretend I had a good time just to make someone else feel better about their good time or their fear of conflict or sorrow. Sometimes support groups are helpful, sometimes they are annoying! I liked this online article about forced cheerfulness :-) I feel like I am an overall happy person who also goes through times of physical and mental pain.
Ha ha ha ha. I want to do the food stamp challenge!
Food Stamp Challenge Guidelines
1. Each person should only spend a total of $31.50 on food and beverages during the week.
2. All food purchased and eaten during the Challenge week, including fast food and dining out, must be included in the total spending.
3. During the Challenge, only eat food that you purchase for the project. Do not eat food that you already own (this does not include spices and condiments).
4. Avoid accepting free food from friends, family, or at work, including at meetings or social events.
5. Keep track of receipts on food spending and take note of your experiences throughout the week.
According to the U.S. Department of Agriculture, which is responsible for administering the Supplemental Nutrition Assistance Program (SNAP, formerly known as food stamps), the nationwide average monthly benefit in FY 2012 was $133.42 which breaks down to approximately:
$31.50 a week
$4.50 a day
$1.50 a meal
It would be an improvement over my real life challenge. To go with this, you also have to shop by powerchair and only be able to buy from places you can get to by wheelchair or public transportation. Don’t forget….you are a senior, you don’t feel well and it’s hard to do just about everything….like shopping, cooking, breathing, moving, sitting upright, etc. Ahhhhhh ha ha ha ha ha ha. I want to see real people do this real challenge. And…it’s not fair to eat out at all. In my whole life, I have only been in one restaurant that took food stamps. That was in Oregon. Keep track of each meal and snack and have receipts for what you bought.
In a 31 day month, there are 4.43 weeks. That means $101 has to be divided by 4.43, which is $22.80 week. OR divide $101 by 31, which is $3.26 and multiply that by 7 days, which is $22.80 week. I rounded off a few decimals. $31.50/week would be great! :-) In my challenge, you only get $22.80/week. Once you have done that for 3 meals a day for a week, multiply that by weeks and years and try to imagine your life. Could you do it?
I get tired of people who don’t have a clue thinking that I am a whiny wuss. Let’s see YOU do it!