Can’t take much more

wile-e-coyote

It’s one of those days I slogged through…and then crashed and burned. By the time I made my bed, showered and dressed, I wanted to go back to bed. But I couldn’t. I had an appointment for an ultrasound of my foot at the orthopedic center. I HATE going to appointments in research park…the boonies out back of the U. It’s very wheelchair unfriendly.

I took TRAX part way, then wheeled it the rest of the way. I did not want to get on the U’s short bus and be tossed around again. Figures. It rained all the way between the TRAX station and the orthopedic center. Good thing I had my big rainbow umbrella. I could see black clouds over the mountains and virga over the valley, but it never did rain again.

I hope I get a new power wheelchair before this one stops working! It makes strange noises and even a couple of miles brings the battery power down to half. The chair randomly swerves right and left and it rides rougher than ever. A few times I thought it was going to quit. Perhaps a loose wire to go with the bent axle?

First, a doc and a tech did the ultrasound of my left foot. In the beginning, he called it a fibroma. They did lots of pics and measuring. Then they brought in the head doc. They decided I have fat necrosis in my foot, which caused swelling that the steroids has brought down. They said they rarely see anything like what’s going on with my foot. What a surprise!😛

My understanding so far, is that we all have fat in our feet to cushion the bones. For some reason, my fat died😦 I then lifted up my right leg and showed them my lipodermatosclerosis leg where the fat has been killed off, and the scar below my knee where fat and calcium were removed. Somehow this is all related, as well as the fact that I have MCTD, which includes scleroderma. They were purposely vague after that. I am supposed to see more doctors for interpretation. I am unclear if I have plantar fibromatosis with fat necrosis or if there is some other name for the whole mess. More waiting for more doctor appointments. Sigh…..

On my way to orthopedics, I stopped at my NP/GP’s office and left a message with the receptionist. I suspect she is the same person I could not understand on the phone. I am not sure she got my message right, either. I have not heard from that office. I wanted them to know that my throat was spasming even worse and that I was numb on my whole left side. My voice was very broken, with each vowel being 3 syllables. Not so sure the non-native English speaker could decipher.

I feel toasted😦 Like an idiot, I again left my cellphone and camera home. Something about going to research park does that to me. I had to wait more than an hour before being seen at orthopedics. My face was neon red from the stupid lights. I was also having a real hard time breathing. I cannot sit around inside a building that long without getting sick from it.

While waiting, veins above the ones that were swollen yesterday popped out of my hand. It’s absolutely amazing how wicked painful such a small spot can be! Tonight I have that feeling in my right upper arm. It’s also still in my abdomen. I just want to barf from the pain😦

My tongue is extra sore.

ouch

I am too wiped out to make much sense tonight…..

Makes sense?

Everything about politics lately feels like a loss of common sense and a march towards mass confusion. I do not agree with everything said by this guy, but I found it to be a fascinating read. Democracies end when they are too democratic.

At 9:30 AM, I got a call from the doc’s office. The woman had such a heavy foreign accent, that I struggled to comprehend what she was saying. I tried questioning her, but it was obvious she was just the messenger, and knew nothing about what’s going on. She said a letter had been faxed to the hospital I was in a year ago February. The fax told either the hospital or my old neurologist to give me IVIg. Huh??? I already told the docs that the neuro said I was too complicated for his practice and was supposed to go back to the U. I cannot do that because the U has some kind of weirdness about people with MG. According to them, we all have conversion disorder. The neuros there are way more interested in ALS. Most people in Utah that I know, go find an MG-friendly neuro not in the U system.

So….what’s up? Why would the docs try to get my old (good) neuro to take me back? The poor guy bowed to pressure from his colleagues. I feel bad about the hardball my neuro, neuro-optalmologist and internist have had to endure on my behalf in order to treat my MG. And now the CNP and GP want the neuro to try to buck the system again? My first thought was how futile that is. Who can fight the U and their insurance? I already tried in court. Will any amount of arguing that I need treatment make any difference? Are my docs naive? Are they brilliant? Are they clueless? It will certainly be interesting to see what twists and turns this takes!

Yesterday I sent all the medical records from my good neuro to the CNP and GP so they had ammunition to fight for IVIg approval from my insurance. I did not expect them to try to recruit him in the fight! I explained how the U neuro told the judge that he was going to give the good neuro “a talking to” for treating my MG….and the next thing I knew, the good neuro that had fought so hard for my infusions and given me IVIg in ICU had dumped me as a patient….by order of the evil neuro at the U. I also pre-emptively forwarded the letter from my mental health counselor stating that I DO NOT have conversion disorder. I’m sure glad I ran to the mental health agency after all the BS from the evil neuro trying to avoid treating MG…by telling the judge that I had conversion disorder instead of MG. Funny that the U tries to pin Munchausen’s and conversion disorder on me (and many other MG patients), yet they never once referred me to a shrink.

It would be wonderful and amazing if this whole quagmire could have light shown on it by people capable of influencing the system. It’s not easy to fight big egos and monetary interests. Can it even be done? Will the U keep up the threats and coersion so that docs cannot treat me? Feels like a spy novel. Sigh….

All day I have had mind-piercing photophobia. Any light hurts my eyes and my whole head wicked bad. Closing the blinds just wasn’t enough. I took a 4 hour nap. When I woke up I was confused about time and place. It took awhile to feel cognizant again. Now this evening, the photophobia is just as bad as it was this morning.

In my past, the only times I have felt like this are when I had mono, aseptic meningitis after IVIg and when I had the worst WNV and it was presumed to be affecting my meninges. Anyone with the sort of symptoms WNV gave me is assumed to have had some degree of viral meningoencephalitis. I had a lumbar puncture, but from what I know now, it was not at the right time as WNV progressed. It’s only in hindsight that many of us West Nilers are labeled with viral meningoencephalitis. I’m not sure any of that matters. What matters is the photophobia happening NOW that has been getting worse for days. I have whole head pain at the almost unbearable level at some point each day. My 800 mg Motrins and the steroids aren’t even touching it.

Another thing I need to talk about is my fluid system. It’s nuts! I often talk about me being a bag of water. Medrol, unlike prednisone, always makes me pee more. This is getting ridiculous. No matter how much I drink, I pee out even more. My skin is dry. I am dehydrated. I have been craving salt like crazy, but it’s not helping to keep enough fluid in me. I have been putting obscene amounts of salt on my food. Usually that would gross me out…but now if I don’t get enough salt, I am very nauseous. The CNP says it’s my autonomic nervous system gone haywire. That’s what lots of docs in my past have said, too.

But DANG!!!!!!!!! Somebody has to do something pretty soon! I feel horribly awful today. It’s the old feeling that I have been kicked in the kidneys by pointy cowboy boots. It scares me that the cat wants to lay up against my kidneys and that she has gently pawed at the spasm in my throat. What does she know? How does she know it? Her little face looks very concerned and she meows. I think my kidney area is hot. She’s a heat seeker.

I have been having the same sensations in my hernia that I feel in the swollen purple veins of my hands. When I first stood up after my nap, the pain and weird feelings from that almost made me faint. Something is very wrong with my abdomen. It’s rigid, and when touched, sets off a whole flood of spasms.

With me, things are always getting better and worse. It’s hard to know when worse means I need to beg for medical care. I don’t care if this stuff kills me….it’s the in-between place of feeling neither alive nor dead, and in lots of pain that scares me. Tonight it feels scary.

wait

 

Thank you!

gifts

I went out to get my mail, and there was an Amazon box leaned up against my door. The driver never even knocked! As soon as I took the pic, I put the Healthy Feet on my feet and in the cracks in my palms. What a relief! The allergic bumps from the CeraVe are almost gone:-) It’s amazing how much less the cracked skin hurts with a nice lotion on them.

The chromebook is charging as I write. I am soooooo grateful for a cord! I kept pressing together the chewed cord and somehow kept it mostly working and did not get shocked. It’s headed for the trash bin.

And vitamins! Ironically I got them the same day as vitamins from the clinic…but their’s are tiny and of questionable pedigree. I am looking forward to taking Centrum Silver for the next 200 days. I wonder if it’s just a coincidence that things went downhill after I ran out of vitamins? We will see.

Thank you kind person….for buying things from my Amazon wish list. I appreciate you very much:-)

ow

I have a new pain today. It’s my right index finger. Twice now the pain has risen to the level where I thought I might barf and faint. How can something so small hurt so much? The palm side of the index finger joint has 2 purple swollen spots. My knuckle from the top to the purple, sometimes gets excruciating pain…and then it disappears as quick as it showed up.

purple

The swelling looks weird. I think my whole right hand is trying to swell up. The pain also radiates up my neck, to the back of my head. It’s similar to, but not the same as the left sided pain I was experiencing. Somehow it feels related to the killer thigh cramp pain because it radiates down to there. At the moment, I have no clue what it is….except that I am reasonably sure it is some form of vasculitis. After all, I do have a collagen-vascular disease. The pain is a lot like when the tops of my hands get swollen with purple veins. This used to happen in Vermont….before IVIg.

General signs and symptoms common to most vasculitis types

General signs and symptoms of vasculitis include:

  • Fever
  • Headache
  • Fatigue
  • Weight loss
  • General aches and pains
  • Night sweats
  • Rash
  • Nerve problems, such as numbness or weakness
  • Loss of a pulse in a limb

appI will be anxiously waiting for the insurance company’s decision. I think it’s time they quit blocking all my docs and gave me IVIg. I want to hear accepted and approved!

reject

Always a new twist

ivig

I went over to the doc’s office/pharmacy to get the rest of the Medrol that had to be special ordered for me. I asked the pharmacist about other meds that I could get through his pharmacy. He told me I could get Miralax!!!! He also thought I could get most of my over the counter meds. No such luck with garlic oil, flax oil or krill oil…but I can get vitamin D, stool softeners, Zyrtec and vitamins along with the Miralax. I wish I had known this a looooooooong time ago. It’s only through the Indian tribe’s clinic that this is a perk. Who knew? Nobody ever told me before. I liked their pharmacy because if a doc there prescribed something, I did not have a co-pay like at my regular pharmacy.

flare

 

While I was in the building, I asked if there was any chance I could be seen today. I got in within half an hour to see the CNP. I showed him my tongue and mouth pics and described all the crazy allergic stuff. I told him about my throat trying to close shut and poked my finger in to show how I could force swallowing. That set the whole thing off all over again😦 My face went numb on the left side and the electrical fizzy feeling got going in my throat again. I thought he was crazy when he tried to feel…..but he could! He said my throat was spasming. When he left the room, I realized I wasn’t just feeling it in my throat, but could feel it in my fingers.

ivigwait

He ran for my GP. They decided I absolutely have to get IVIg. So….they are writing a new script today and are fighting insurance for me to get IVIg. I warned him before, and again today, of all their tricks and denials. He said he was going to work on the request all of the rest of the day.  I sure know by now not to get my hopes up….but I am allowing a sliver of hope and joy:-)

cure

Who knew all this was going to happen when I woke up today?!?!?!?!?!?!

good

I’ve been on a roll at asking for things. The manager said the maintainence man will put up my curtain rod this week:-)

keep

 

Carpe diem quam minimum credula postero

happy

I am glad that when I felt good a couple of weeks ago, that I enjoyed it. It was heady. I could do things I had not done for years:-) My life was not one giant glob of pain and disability. I had strength. I could talk! I could see well. It was magnificent! Even more than all the physical things going on with me, what cripples me is guilt. I feel guilty for being disabled. I need to work on that.

A few good days is definitely better than none at all. I am greedy. I want to feel that well again! I am surprised that things went south so quickly….and that I have not bounced back. Sigh…

Last night sucked. I felt strange. There were waves of feeling like I was going to die…but it was painless. Once I got flat in bed, it only got worse. I had to sit up until 4 AM. Then I slept until around 11 AM. There has not been a moment so far today that I have felt well.

Probably most people either know what MCTD is by now, or don’t care. I was researching MCTD and anemia when I found this page. I have read it before, but it seemed even more pertinent because of the flare that I am in.

side

Look at those stretch marks as the hernia grows😮

The connective part of MCTD has been on my mind a lot. Last night, when I first got in bed, there was a tugging on my belly scar tissue that I had never felt before. Also my whole hernia/belly area felt sort of electrical, with deep pain. As I was feeling the hernia with my hands, I realized I had new lumps and rips. I tried to take pics, but I just cannot hold the camera at an optimal angle. With the flash, there’s a lot of glare. Without the flash, it was dark and murky. Trying to show the tennis ball sized lumps coming off the basketball sized lumps would need Olive to take my pic. Not happening any time soon.

stretchmarks

To the right, if you look careful, are scalloped edges. Each bump is the size of a tennis ball, coming off the main hernia.

whitestreaks

The white lines, also called silver striae, are getting longer and more numerous.

Taking steroids is hastening the bursting of the hernia. My skin has already noticeably thinned😦

Oh!…..when I did finally fall asleep, I woke up at 6 AM with mind bending killer thigh cramps that went all the way down to my knee. Those usually happen from dehydration or doing too much. I have been drinking plenty…and did very little yesterday. Hate those! It feels like my blood supply gets cut off. Wicked, wicked painful.

Moroni

At 8 PM, this is the nicest weather we have had all day:-) Around 2 PM, a thunderstorm and heavy winds rolled through. Lightning hit the angel Moroni on the Bountiful temple. He got his head and back blown up. Yikes. Glad it wasn’t me!:-)

Carpe diem quam minimum credula postero means ‘seize the day, put very little trust in tomorrow [the future]’

carpe

Woke up sad

reality

What’s the problem now? In the middle of the night, when I got up to pee, my feet were on fire. It hurt like heck to put weight on them. Once I woke up for real this morning, they were OK. I feel very blah. The MG has got me severely bummed. All my MG symptoms are back in force. I woke up at 8 AM with a blanket of sadness. I had not even had time to think yet when I started crying😮 That’s weird.

I went out to the community room and for the second Saturday in a row, there is no pile of bread on the table. Must be that perk is dead and gone. The rain had stopped, so I went a block over to DI. I have been looking almost every day to see if there are any clothes my size. Nope. It was a fluke when I got my shirts. I looked it up. I got 7 shirts for $28 on December 9th, 2014. They were used when I got them, so some are falling apart now.

When I went to get dressed to go out, one of my shirts had a hole in it just from hanging there. I have sewn and resewn that shirt many times. The fabric is giving out. I bit the bullet and threw it out today…when even more fabric shredded while I was wearing it. I need to get more clothes. All of my skirts have numerous holes. It’s a hazard of wheelchair use. I am looking like my socio-economic status…that of a poor person with no resources. I need new shoes. I rarely walk with shoes on, but my Birkenstocks are pretty darn shabby and falling apart. I bought them online in 2011, on clearance, when I lived in the Adirondacks. Interesting wear pattern, huh? I wear out the outside edges.

pattern

Between being fat, having a humongous hernia and having that bump in my foot’s arch, it’s hard to buy clothes and shoes that fit and feel comfortable. Add to that having hardly any money, and I have no idea how to go forward. In the past, I tried buying Birkenstock knock-offs, but they hurt my feet. I keep wishing I knew the name of what was wrong with my mother’s feet. There were hardly any shoes she could wear, either.

wear

How I look has become more important to me. I guess it’s because as my clothes become obviously well worn, people treat me differently. The shabbier I get, the shabbier I am treated.  I am freaked out by how much shirts my size cost. I obviously haven’t shopped in a long time, but they seem to run $40 to $50 and up on Amazon. Geeeeeeeeeeze! I remember why I don’t look at new clothes. Might as well be a million dollars….cannot afford them.

I woke up thinking about what I lack, instead of being grateful for what I have. I have to keep chanting in my head at least I am not homeless. What I want is a wheelchair lift van to get out of Utah. Craigslist has nothing under $20,000 lately. If I didn’t pay rent, doc bills, food, etc for 2 1/2 years, I would have enough to buy one😛

This is probably why so many poor people drink and take drugs….to try to obliterate the feeling of hopelessness. But substances only make it worse😦 It’s weird that I woke up sad. Is it biochemical? Did I have a bad dream? Is something about to happen?

BOOM! I was thinking about sorrow….and booooooom…..rumble, rumble, rumble. From my chair I could see more blue sky and white clouds than rain clouds. There was another enormous rumble from thunder and a flash of lighting from the west, mostly out of my vision. I stood up to look out the window. A black cloud mass was coming towards us at a good clip. This weather certainly qualifies as interesting! It has been all contrasts lately.

curtain

I actually did something today. My missing front closet doors have been bugging me ever since I moved in. I have been promised them back numerous times. I still don’t see them after 2 years! The flip side to feeling bummed that I am stuck here is the knowledge that I am not leaving any time soon. Instead of being totally grouchy, I did something about it.

 

full

Now when people walk in, the first thing they don’t see is the vacuum, broom, swivel mop and other assorted stuff. It’s all behind the curtain…which is just one of my flat bed sheets.

thumbtacks

I put it up with thumbtacks…thanks to steroids:-) Usually I cannot lift my arms up very far. I wish I could tack up my bedroom curtains. Actually, I really, really wish I had a curtain rod. I need someone who’s tall, with long arms, or someone agile enough to stand on something.

chairs

I kept thinking my tenancy here was going to be short, so I didn’t care all that much about how things looked. When the missionaries came over, I made them get out the camping chair so they would each have a chair to sit on. I don’t like sitting here looking at the camping chair. I had it with me when I got bit by the WNV mosquito…but most of all, it reminds me that I am not camping😦 You know what I would like? A wicker love seat. Then I could fold up the camp chair and the red chair could stay under the cat feeding table until more seating was needed. It would be nice if there was something across from me that was pleasant to look at….and useful for guests.

wicker

I need a yard sale find like this:-) Not many yard sales downtown.

Well…At 6 PM I felt well enough to go to Smith’s. I got a curtain rod for $4.99…but I really got it free:-) I never told you the bacon story. Last time I went shopping, there was cheap bacon for $3.99 a package, or manager’s special uncured bacon for $3.99. I bought the yuppy version. But when I got home, I had been charged $8.19. You can imagine I was NOT amused to have bought 12 ounces of bacon for that price😮 I immediately emailed the company, but they did not respond. I went to customer service today….and instead of giving me the overpayment, they refunded the entire price and tax! I got a $8.44 refund….and that’s how I paid for the curtain rod. Win! Soooo cool when things actually work out in my favor:-)

I might have felt well enough to go to Smith’s, but I felt awful once there, and on the way home. Oh, well….I got the curtain rod! That’s all I bought….so I made money by going to the store:-)

hernia

Back to the hernia and feeling awful. Some of the very puckered skin is quite thin. It’s still ripping easily. I can flatten out to the left of my wound, but the right is almost too tight and too big and too heavy to even lift, let alone flatten. It’s the lopsidedness from the hernia weight that keeps ripping my skin. But….this is the most healed it has ever been. There’s still a raw spot at the top of the pucker. That’s my belly button just below my pinky’s knuckle. I am amazed I lived through this. It has been 1083 days since I was cut open. Not much longer until the 3 year anniversary.

I am a snot. When I am reading support groups, I want to smack some of the women with barely anything wrong with them who are on massive amounts of pain pills and complain bitterly at stuff I scarcely notice. Sometimes it’s hard to dredge up the empathy I should be feeling. Not very nice of me. I quickly rediscovered this about myself this week. Not very nice at all.

My other pet peeve is people who complain how poor they are, then get into specifics. Oh, please! Having your cellphone turned off because you racked up over $300 in charges last month, sounds like more of a discipline problem than a real one. Yup….feeling snarky. I unsubbed from most groups again. I got told one too many times that I would be healthy if I just ate organic fruits and vegetables and gave up grains. If only. It’s always the militant newbies who say that. After awhile they either die because they refused to take steroids that will make them fat, or they refuse Mestinon and take herbs and croak. The old ones know better.

As I used my last 2 pieces of bread to make a pb&j sandwich, I was remembering back when I ate low carb. The taste of breads and sugars grossed me out. Now I eat them on purpose and am lots fatter. No brainer to eat pb&j now….free bread, free pb and free jam. Well….there was free bread. I went back to the community room several times today. Nothing. I started thinking….are peanut butter cookies really much less nutritious than pb&j’s? I have the ingredients:-) There’s a backlog of food bank peanut butter in my cupboard. I need to make more peanut sauce for steamed veggies and rice. Mmmmmmmmmm……

Gee….I have been good at rambling today. Anything to take my mind off of what is really bugging me. So tired of crying……

suck

Wild night!

slcfire

Here we all were, expecting the wind storm to be the big deal. Ha! Soon after I published last night’s blog post, the power went out. I feel bad for all the appliances in town. The power did not go off and stay that way. About a minute of off, on, flicker and then gone. That was around 10:45. WOW! An already dark night and the power goes off. If I stand up and look northwest, the closest big building is the Grand America hotel. No lights as far as I could see and none to the east, either, except the red lights on the roof tops. To my north is the parking garage. One emergency light was on there. Only 2 of many emergency lights were on in my hallway.

As usual, the automatic battery-operated under-cabinet lights in my kitchen scared me. I am grateful I bought those when I first moved into this apartment. It was so dark in here that I could not see my hand in front of my face. I knew just where to reach my battery operated radio and headlamp without even moving. Soooooooooo quiet with no power. I headed for the bathroom very slowly, with the headlamp on my head, but not turned on. Got to where the motion detector could detect me and a bright light came on. Startled me! After that, Olive turned the light on many more times.

The silence was both wonderful and eerie. TRAX was still running, but all traffic lights were out. I could hear TRAX tooting their horns all through the city as they went through intersections. I sat here with the window open, soaking it all in. When the power went out, there was no wind and only very light rain. I tuned the radio to a local station that is actually staffed. Nobody seemed to know what was going on. Rocky Mountain Power said they did not know the cause of the outage. I knew right away that it was not a neighborhood problem, because there was no big pop at the transmission station.

refinery

Lots of reports of a fire at the refinery north of downtown. The refinery had to shut down because of the power outage. The fire was just burning off gas while offline to prevent a pressure build up. This made the outage feel even more other-worldly.

I could not go to bed until the power came back on. Without my CPAP and oxygen concentrator, getting flat would mean not breathing. I sat up and enjoyed the silence. My place had the power off less than 2 hours. Not everyone was so lucky. 82,000 people were without power. I watched the lights come on from north to south. One of my salt lamps blew. I seem to lose a bulb for every outage.

This morning, most people have had their power restored, but some traffic lights are not working. TRAX trains are needing UTA police escorts to go through intersections. The SLC police department says tough luck at regular intersections, they don’t have enough cops to direct traffic. Reporters are saying lots of near misses for the morning commute. Cops claim that all those sirens for hours on end were just “normal” first responder calls. BS! I have never heard so many sirens both before and during the power outage. There has got to be more to the story.

I-80 was closed for awhile last night because a tractor trailer of ammunition was on fire somewhere near the NV/UT border. I only heard it on the radio. Nobody is talking about that today. Why? Geeze. I was googling “tractor trailer of ammunition on fire” and see it happens way more often than you might expect.

I went to talk to the manager about the guy getting high in front of my window the other day. He’s the “adult” kid of a woman upstairs, who has a husband. I told him not to tell me more….because I would inevitably like that person a little less. I will probably find out anyway. I have my suspicions. I can only think of five couples upstairs. The reason the manager abruptly turned around by my window when he saw the guy was because he went in and told the mother. The guy had already been kicked out of here and was not supposed to be on the premisis. Pffffffttt….I hear his car here several times a day.

Which reminds me…quite a few more people in this building have gone over or gone back to the dark side. Drugs are a big deal here. All the creepy people clump together. If one quits drinking, smoking or drugging, it doesn’t take long until they are sucked back in again. I watch it all happen daily, in front of my window. They get skinnier and skinnier on each trip past on the sidewalk. Even from several feet away, I can see their sunken eyes and protruding cheek bones and the meat is falling off their bones. It happens pretty darn quick. Some are suddenly covered in sores. Usually their hair has big changes. Who needs TV? It’s like my own sad reality show.

I DID get good news! Supposedly within the next 2 months, Google will start service. And the best part? We get the basic Google Fiber free for a year. No $300 up front. Of course….I will believe it when I see it. Sounds hopeful:-)

Tonight the boom car was out there again. As always, the noise hurts me. It goes right to several places I have scar tissue and it also makes me feel sick to my stomach, besides giving me an earache. I wondered if I am the only one who feels this way, so looked it up. As I have suspected all along, the noise it makes…just like the ice cream truck that didn’t really sell ice cream…are ways to let people know that drugs are for sale. The guy will just randomly go through the parking lot. Next thing you know, people are meeting up with nearby people and cars. Then soon after that, the zombies appear. Such a waste of money and humanity😦

tongue

Nothing strange happened to me today as far as allergies go! I ate OK. My throat still feels sore and swollen, but it is not so scary. My mouth and tongue are OK. The bumps on my hands are still there….but smaller. Hmmm…I took this pic, thinking it would look better. Not much. At least it’s not as painful. Little victories mean a lot.

serenghetti

The excitement of the day was the landscaping crew. They did major thinning of the red leaved trees out front. All bushes were thinned out so fewer homeless people can hide there and creepers have a harder time finding a spot to ambush from. Ahhhh…..realities of the city….

After the landscapers left, I took a couple hour nap. The stupid photophobia was making light pierce into my skull. By the time I got up, my eyes felt better. I wish my head pain would blow away with the wind tonight. The newly trimmed trees sway differenly in the wind than they did yesterday. I hope they are tough, yet supple. I wish I was:-)

wood

Scary stuff

towel

There are medical things going on now, that were happening a year ago February when I went into myasthenic crisis. The left half of my tongue is numb. It started with a soreness in my neck . The soreness became stiffness. I can swallow on the right, but not the left. Three fingers away from the hinge of my jaw, into the soft part of my neck, that’s where it won’t swallow. I poked around and massaged that area. If I kept my finger pressed in there, I could swallow. But….messing with my swallowing seems to make the numbness and tingling worse. On that side, on the inside of my throat, I keep feeling a sensation like fizzing/electrical/tremoring. When that sensation is the worst, it feels like my throat is closing shut. You can imagine this is an unpleasant and scary thing.

The numbness and tingling at my jaw goes into my shoulder blade. The pain also goes the other way…up my neck to the back of my head. It hurts most when I turn my head to the left. Weird and disturbing.

Whenever things get dicey, I try to stay distracted. I was hungry, but afraid to eat. I decided to go grocery shopping to keep my mind on other things. My back/neck/head were painful the whole time and sometimes my throat tried to shut. All day long, my throat has been doing the fizzing/electrical/tremoring thing. I just plain cannot smile. My facial muscles are toast. My eyes keep trying to droop shut. At first, I could not talk. Ech time I tried it went like this ha-a-eye. I hate it when I open my mouth and hi is a 3 syllable word😦 That’s almost always how I discover my voice is broken. The next most common is Ah-uh-luv. The cat doesn’t care how I say her name.

Ugh…it feels like my head is being pulled to the left and down. Hurts. I had my doubts about leaving the apartment like that, but wanted to get a few groceries before the extreme wind hit. Just north of us got a weather service warning on TV…with winds hitting 70 mph. Sure has been a windy spring! Any plant still hanging onto its leaves, flowers and fruits is well attached. The ground is littered with baby leaves and fruits. I was surprised to see cherries on the ground already.

I went to Trader Joe’s first. I got ice cream, fish, tamales, 3 kinds of salsa, Sriracha bbq sauce, olive tapenade, coconut oil and a box of cream for $42.76. Then I went to Whole Foods and got 2 bottles of flavored lemonade for a grand total of $3. Next, Smith’s for chocolate syrup, salsa verde, sw cond milk, sliced cheese, milk, pie crusts, 2 ears corn, celery, frozen burritos, cat litter and Iams cat food for a total of $50.60. $81.42 of it all was from my $91/month SNAP. The rest was cash. I bought chicken-turkey grain free Iams for $13.99 on May 5th. Today they had a bunch of the same 4.3 pound bags on clearance for $6.99…so I grabbed another one. Less than $10 left from SNAP to last until June 15th. Doesn’t seem like a whole lot of food.

When I got home, I had half a glass of chocolate milk and the whole throat and tongue thing started all over again and is still happening. Seriously. I am afraid to eat and afraid to drink anything but water. Not feeling too well tonight.

Outside is ominous. The sky is dark, the wind is gusting. So far, all of the worst weather is just north of us. We are supposed to get hit here in SLC later tonight. We had about one minute of driving rain and then it turned into just plain old rain. The worst is yet to come. They say 60 mph wind here in the valley tonight.

I wonder what’s going on? Lots and lots of sirens between 9:30 and 10 PM….then quiet…..

Is Utah in the national news about the TRAX worker and his truck? The guy was found dead in Wyoming and his truck was stashed in the woods 100 miles away…near where 2 kidnappers from Utah were caught. A father/son kidapped a mother and her kids in Centerville, UT. Very long and convoluted developing story.

Thursday I went through where the TRAX guy was last seen while I was on TRAX….same time, same day. At that station, I looked at a man in a white TRAX truck and had an odd feeling. Lately it seems that whatever I get that feeling about, then goes on to be part of a news story. This used to happen to me all the time in my 20’s. Shudder…..

Afraid to eat, afraid to look around. Hmmmmmmm……

afraid

Allergic cascade

It has been building up for days. Each day new allergic reactions happen and intensify. Ever eat something really salty and feel the inside of your lips get kind of rough? I noticed that feeling for a few days. Then, for several nights, my tongue got more swollen and sorer. When I woke up today, my tongue would not fit in my mouth…and it hurt a lot. I rinsed my mouth with cold water a bunch of times to try to mitigate the pain.

breakfast

Late this morning, I decided to make breakfast. It was my usual sort of scramble with onion, mushrooms, pepper, zucchini, tomato, potato, avocado, eggs and cheese, with red salsa on the side. All I did was touch the fork to my mouth and the left side of the lining of my mouth was on fire. Instantly the lining changed texture and got rough. Bumps popped out and the burning was intense. Soon my gums hurt even more than the lining of my mouth. Water did not help.

redhalf

Sorry for the horrible picture. I was frantically taking pics to see what it looked like. Most were worse than this. To the right in this pic, there are 3 white spots against the angry redness. My whole mouth was full of those bumps😮 It was hard not to flip out.

 

I remembered that in the past, the awful sensation went away if I kept eating or brushing my teeth. I very reluctantly ate a few forkfuls of breakfast. It worked. After awhile, the pain stopped.

otherside

I spent the next couple of hours with roving hives all over my body. It was the same last night. Lots and lots of hives with big red welts on the back of my neck. I even had hives on the soles of my feet and touching my eyes. This is while on steroids!!! What the heck? I still have the hard bumps on both hands and my head is a mess of raw, itchy sores. My face looks bad, too😦 These tongue pics are from tonight. I have not eaten since breakfast.

crazytongue

It’s as if part of my tongue sloughed off. I found pics just like mine by searching “allergic tongue”. Tonight most of the pain is on the under side of my tongue and the base of my tongue down in my throat. This is a combo of my regular geographic tongue, mixed with something new.  Arrrrgggghhhhhh!!!!!!!!!!!

I did almost nothing today. The best part was a 2 hour nap! But…I woke up thermonuclear hot…especially my head and feet. The erythromelalgia in my feet was blazing red and burning. I poured cold water on my feet and legs. I soaked my head in cold water, poured cold water over my arms, had the A/C on cold and had the floor fan pointing at me on high. It took more than an hour to cool down. I had been napping with the A/C on, so it was already cool in here!

Oh….the biggest reason I took a nap was because the photophobia had gotten so awful. Any bit of light burrowed deep into my head with wicked intense pain. This has been happening at random times for at least a week now. There have been a couple of days that I kept my blinds closed. That’s not usual for me.

I’m entertaining the idea that I am having yet another West Nile Virus flare. A lot of this feels like it. I just don’t know…and unfortunately docs are virtually useless for long term WNV guidance. I reactivated my WNV support groups today. Definitely the best source of real life info.

It sure hurts to breathe tonight. I might be visiting the doc sooner rather than later for that. It’s scary to have my swollen tongue and throat trying to cut off my air. Sigh…..

Back from the doc

Well…that was interesting. I reported on my palmar and plantar fibromatosis. I asked the CNP to tell the GP about it when he gets back from visiting the Goshute reservation. I looked like hell today and there was no hiding it from anyone. Everybody brought it up first. My eyes were way drooped down and my oxygen saturation was 91. The BP taker asked if I was on oxygen at home. I could not smile and my face looked melted. The CNP looked in my ears and said my right drum was dull. I told him thanks. Snicker…

I explained that my left ear was “stuck”, my lymphs swollen, my breathing weak, etc. I even had him feel the allergic bumps on my hand. I told him my breathing tanked when I had the allergic reaction to the CeraVe from the podiatrist. When I showed him a sample tube, he burst out laughing. He says I really am allergic to everything. He already gets my personality and knew I would find that ironically funny. Sigh…

He asked me if I was on any inhalers. I said yup, albuterol. He said he was about to prescribe it for me. I said good….because my last one had expired. He asked if I take Zyrtec. I said yes, but I was going to run out this week. He said he could prescribe it! I love the little pharmacy they have. When I get my meds there, I don’t owe a co-pay. Perhaps I should switch all my meds to them? I will ask next month. They could probably make a decent amount of money off my prescriptions. Because the clinic is owned by the Goshute tribe, there are different rules for Indian health care clinics. I can get some of my over the counter stuff like Zyrtec for free! I did not know that before. I have got to have a serious discussion with them about everything I need. Maybe I can get a few more things there?

So….the CNP decided I need more steroids. I didn’t even need to tell him or beg😛 It’s as if this guy knows me better than I do! I don’t know as I have ever had such an empathetic and intuitive doc before. I want to know how he got so smart. I just took my extra Medrol. 24 mg of Medrol is equivalent to 30 mg of prednisone. He said he is willing to go a lot higher if I need it. He mentioned up to 200 mg😮

I told the CNP about my erythromelalgia getting worse. He never heard of it. I bet he looks it up, though:-) He was appropriately intrigued and grossed out.  I said it mystifies me that despite steroids, my allergies, asthma, erythromelalgia, MCTD and MG are all flaring up. He was mystified, too. He chalked it up to me being me. Ummmmm…..great.

I feel soooooooooo wiped out by the internal war that is waging. I stripped my bed this morning. I hope I have enough energy to put the new bedding back on before I am ready to crash again. Soooooooooo exhausted……

I just did a very bad thing😦 I have not been hungry lately. Well…I suddenly got ravenously hungry out of the blue. This is embarrassing. I nuked 2 franks and was still starving. Then I nuked a hamburger, onions and mushrooms I had already prepared that were in the fridge. Then I felt like I was going to die if I didn’t eat something sweet. I made a pear dump cake. About half an hour later, I could feel the bloat. Plaquenil causes lots of gas….and then I filled my stomach with all that food….which was like 2 or more days worth compared to how much I have eaten lately. Ohhhhhhhhhhhhhhh….self inflicted pain…… It was as if another force made me do it, and then I woke up. That was weird!

While cooking, I realized I forgot to ask for more Plaquenil at the doc’s office. Oooops. And then I realized that 2 weeks ago, the CNP said he was going to do more blood tests today. Neither one of us remembered. Then I wondered how much he is allowed to do when the GP is out of the office? Utah is a limited practice state for nurse practioners. The clinic seemed empty today. I will get around to asking my questions…one of these days. I have an appointment in a month and he said to come back in sooner if things change.

The pharmacy delivery company showed up at the exact moment that I was going through my pill stash. I was thinking they should have delivered my meds by now. Just like last month, they forgot to give me my Motrin. Grrrrr! The more I think about it, the more I want to switch to getting all my meds one block away.

And….another knock on my door! I knew there was a reason I wore PJ bottoms and a t-shirt instead of my usual flimsy nightgown. It was the missionaries! I have not had any of them visit me in a long, long time. We talked about my money dilemma. Pay tithing and be able to go to the temple, or use that money to live on. Both looked like deer in the headlights. Probably neither one has ever had to worry about money. They fled within 5 or 10 minutes. Quickest visit ever. Eternity is nice to think about. Making it through life seems awfully darn complicated.

I never did have a time of feeling OK today. I hope I do tomorrow. My head is not happy. Owwwwwwwwwww…….

stuffed-up

Oh, look! A picture of me. Right down to the red rimmed eyes and itchies on the hand. I am definitely cranky, too.

 

 

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