I can see the air

It’s not good to be able to see the airūüė¶ Got an alert saying it’s going to be a bad air day…high in ozone and other pollutants. Yuck! The smell of exhaust is nasty….and so is my splitting headache!

I woke up feeling refreshed, in little pain and feeling human! It has been very, very nice to sleep at night. No sitting up because of extreme pain or trouble breathing:-) The only PITA is that I get up every 2 hours like clockwork. Full bladder. Each time I wake up, I am soaked in sweat. The good part of that is….built up edema is sytematically leaving. I am thinner each day. I like that part:-)

breakfast

By mid morning, I was hungry and made breakfast of eggs, onion, sausage, mushrooms, zucchini, sweet potato, half an avocado with Sriracha bbq sauce. This is a pic of the same breakfast yesterday, but also with some red, green and yellow frozen peppers added. I forgot to take a pic today. I forgot I had peppers in the freezer today :-p

Once I finished eating, I spent a long time coughing up crud from my lungs. The pain in my head was piercing. I was sorely disappointed that even with steroids, I was feeling so awful. DUH! I had already forgotten it’s a bad air day. I remembered what was up when I opened the bedroom window and Olive and I hung out on the windowsill with our noses touching. The smell of exhaust was nauseating. Really….how can I forget stuff so fast?

bedcorner

I could not stand the thought of what was under my other dresser another minute! I moved it to find more cat toys and lots more cat hair. Then I moved the bed all the way to one side, then to the other side to clean under it. I decided since I can only sleep on one side of the bed, I would push the bad side against the wall. I also switched the bed end for end. Now I have a footboard rather than a headboard. I put the 2 green dressers together and switched the wicker drawers to near my head, so I have somewhere to put the CPAP. It will be interesting to see how this configuration works out. I think I really need to throw out the wicker drawers. They are pretty much toast.

wall shared with living room

In the funky little corner I have 3 IV poles from past home infusions. They make a good place to hang up clothes.

I have not been using one of my green sets of drawers because it has holes for 3 drawers, but only 2 drawers. I am now thinking maybe I could find two plastic trays that will slide into that space. Then I could have underwear in those and could toss the wicker. I could not use those green drawers because things plugged into the only electric socket blocked them from opening. I did not want to set up my bedroom the way it was with bed in the middle and a dresser on each side. The senior missionaries and Heather moved me into this apartment. Until right now, I had neither the motivation or strength to change anything. I am very surprised that none of this has hurt my hernia…..yet.

bed and dresser

Hmmmm….I could always empty the fully working green drawers, use them for clothes and find new homes for what had to be moved out of the drawers. DUH!!!

open space for wheelchair

Now there’s more room for getting the walker and wheelchair next to the bed, with room to turn them around.

OK, I did it!:-) I cleaned out the top drawer of the best unit….put in undies and nylon nightgowns. Cleaned out the wicker drawers and put stuff in the unused drawers. Much better!:-) I have the wicker ones by the door. Next is to somehow get the wicker to the dumpster. I am soaked in sweat, so the first thing I need to do is sit in front of the fan until dry. Feels good to sweat because I am working! Before I got real sick in Vermont, I could do a lot of shoveling manure or tilling dirt on a good day. I used to be stronger than most women and a lot of men. Stupid autoimmune diseases!

command center

My beat up, formerly comfy chair…with holes in the arms.

I still have to clean the dreaded bathroomūüė¶ It looks OK at first glance, but no matter how many times I sweep and mop the whole apartment, there is always more cat litter and cat hair to be found. The stuff gets around. Olive’s litter box is under the bathroom sink. I wipe down the sinks multiple times a day and keep the kitchen clean…so not much to do there.

living room TV corner

Olive acted like she wanted to sit in a chair, so I dragged it back over. I have not seen her sit on it yet.

Well….I got the wicker out. First I took the 3 drawers to the dumpster, then came back for the rest of it. While coming back from the dumpster, I stopped to talk to people who had just come back from DI. I decided to go over there. Meh. Nothing interesting. I suppose I could get a couple of padded kitchen chairs for guest seating. The most promising ones were $8-$10. Not today, though!

OliveBed

Olive’s preferred bed is in a suitcase with her zebra blanket.

It’s hot outside! Over 80 degrees. Coming back on the sidewalk, I went through the sprinklers on purpose. About 25 feet further and I was already dry! It’s a breezy afternoon. I was thinking that I have done more in the last 5 days than the last 5 weeks. And I felt good about being alive! I was not in a painful stupor just barely tolerating moving from place to place. I was enjoying myself!:-)

I have not felt this well since my last IVIg. I truly had forgotten what NOT being in pain was like. I am not sure which part is better…strength, or not being queasy. Love it!!!!!!!!!:-)

goodlifecat

 

I broke it…I fixed it

First off, I was at the doc’s office at 8 AM this morning. I told the CNP how much better my life is on steroids and asked for more drugs. He decided to put me on 16 mg of Medrol per day, which is the same as 20 mg of prednisone. I will stay on this until the side effects are worse than the benefits….or something else changes.

He says I should start feeling much better thanks to the combo of Medrol and Plaquenil. He was surprised I was right about steroids making my edema better. I went from horrible pitting edema to just a little edema. I can lift up my arms as easy as can be:-)

He’s not sure what my blood tests mean yet. I will go back in two weeks to see if they change on steroids. He told me stories about quality of life versus quantity of life. We agree it’s better to feel alive and die younger. I have already lived longer than my father and have been clinically dead twice….so it’s all a bonus anyways. I really like the CNP:-) Today I asked him how old he is. I was confused. He seemed to have lots of life experiences, yet looked young. He’s 36. I find the guy fascinating. If only all health care people could be more like my GP and CNP, the world would be a better place. It sure is fantastic to have them working for me….in the same office….a block away:-)

I came home, changed into my nightgown and then the Google guys came back. Of course today, they wanted to play in my closet! The guy took all the clothes from one end of the closet and put them on my bed. Then he used a drill bit at least a foot long and made a hole in my closet ceiling. The last guy to leave said they will be back later today. Gee…if I knew what they wanted from day to day, I would have been ready. Instead, I put everything back in my closet yesterday. Just can’t win with this project!

I took my extra prednisone when I got home, so today’s dose and the extra weren’t too far apart. Soon after noon, I started to feel energetic. I decided to change how my TV sits on the counter. I was shocked at how thickly coated in crud the TV screen was. Yuck! Then I accidentally dropped the converter box and the TV quit working. It took me about an hour to fix it. While poking around on the TV menus, I discovered the settings for brightness, contrast and color weren’t right. I put them in the middle of the spectrum of choices. Between fixing the settings and cleaning the screen, it’s like a whole new TV. I also took the TV down off the box it was sitting on.

My comfy chair has gotten considerably less comfy over time. I added a big, thick upholstery pillow under the regular cushion a long time ago…but I have sunk so low that I can barely see much in the parking lot any more. Both chair arms are threadbare and the stuffing is coming out. The coarse weave of the threadbare upholstery fabric makes my skin hurt. My back hurts more than ever from sitting here.

As I sunk, I had to tip my head up more and more to be able to see the TV. My neck always hurts. I realized DUH….time to lower the TV. When I moved the box from under the TV, I realized that’s where my old Christmas decorations went. They were in the pillowcase covered box.

My next project is to move the bright green bookcase in the far corner. Then Olive will not use that route to get up on the counter, walking by the TV and depositing cat hair on the screen as she struts by.

It’s really cool what steroids are doing to me:-) I have enough energy to both think and to make changes. I just moved stuff all around in the living room. Now the bookcase is near me. Everything is near me. My chair is my command center. It felt really good to DO something! I have been in tons of pain and too weak to move much…waaaaaaaaaaay too long. At least at this stage, steroids are a miracle substance. Who knew I could have my life back after a few pills? It’s not IVIg, but it’s what’s possible right now.

I wish I knew lots of things a long time ago. I thought for sure I was going to get out of Utah…..so I never applied for Section 8, or looked for other apartments or did anything to make my life here easier. I just sat here and suffered. Each year I thought I would be out of here. Each year nothing happened. I thought I had a way out. Turns out I did not. A lot of enduring down the drain. I suppose there was a reason for it? I had plenty of time to think.

The Google guy just left. He says they are done with this apartment and I won’t see them again until I actually get Google Fiber. I hung my clothes back up and swept up their junk. Since I was there, I pulled the dresser away from the wall and bed. Jackpot! That’s where a whole bunch of cat toys were hidden. You know what I really, really need? A new bed frame! I miss being able to sleep on more than half the bed. I tried to sit on the broken side today and could feel it wanting to fall down. Bother!

Screenshot 2016-05-03 at 3.18.50 PM

Screenshot 2016-05-03 at 3.18.26 PM

Screenshot 2016-05-03 at 3.19.20 PM

See how special we are? Not many places in the country have Google Fiber. Both Provo and SLC in Utah lucked out. Online, it says it’s either $300 for basic service, or $25/month until $300 has been paid. That’s it. If I were to want the really good internet or internet and TV, it’s a lot more. Here’s how it’s structured for Provo. It will be months before service starts in SLC.

Screenshot 2016-05-03 at 5.01.46 PM

other side of me

Thursday is apartment inspection. So far most of the furniture has been moved and the area swept. Just a few more spots to do. I did a lot today! I keep this place fairly neat and clean, but I don’t often move furniture. It’s amazing how much cat hair collects in those spaces! And wow! I forgot Olive had so many cat toys. Good to find them again. She has been bored lately.

corner

The two above pics are on either side of where I am sitting. Most of what I need is within reach. Below is the blank, boring wall across from me. I need some sort of furniture for guests….and to cover up the cords.

wall across from me

Heather threw out my big old broken couch and bought a futon couch for her to sleep on. Turned out to be way too low, unstable and not very useful. She didn’t want to sleep on it. My old-people friends could not sit there….and get up again. I sure couldn’t. Then Olive tore up the futon couch underneath. I was glad to see it go. I put my camp chair there so guests had something to sit on.

I have mixed emotions about the things I gave away when I thought I was going to move into a vehicle. I like minimalism. I like less stuff in here…but I would not have given it all away if I had known I was staying. I am glad I held onto what I did! I’m most glad I still have the non-functioning salt lamps. I want to try cutting out the dimmer switches and wiring the cords back together. One good thing about me is that I forget fast. I have forgotten many items :-p I do miss a couple of my nice, woven baskets…but I can always buy more for a buck or two over at DI. I have not been to DI in weeks. No grandsons to buy books for and I did not want to be tempted by any more stuff.

I can only assume it’s OK to mention now. My kid is moving to China for 2 years. She’s pregnant with son #3. I will miss themūüė¶

A morning at the hospital complex

Well…I set my phone alarm for 7:30 AM so I would have enough time to be ready for the Google guys before it was time to take off for my neuro-opthalmologist appointment. I took most everything out of my closet and put it in a far corner of my bedroom, far from the current cable connections on both sides of the wall. I moved the wicker drawers from the cable wall to the outside wall.

Then in the living room, I folded up the camp chair and put it away. I took the red chair and put it under the little built in triangle table where cat food and water goes. The place was nice and clean and ready for Google. Then I made a sign for the door that said unsecured black cat inside. Don’t let her out this door!

I took off for TRAX and the Moran Eye Center. The neuro-opthalmologist’s assistant, an intern, then the doc, messed with my eyes. Not fond of eye dilation and the drops that make my eyeballs feel fuzzy. It seems instruments to measure pressure change at every visit. I liked today’s little zapper best of all. The punctal plugs were gone. YES! He wanted to put new ones in. I said NO. Then he tried to convince me to try some even creepier kind of plug. NO. I did agree to go back on Restasis for 6 months. I hope I do not regret that!

I have to give the guy credit. He got all excited when he found out I got 5 IVIgs last year. He is one of the docs who prescribed IVIg for me in the past.

My diagnoses:

 KCS (keratoconjunctivitis sicca) (HCC) [222868]  РPrimary
Type 2 diabetes mellitus with diabetic neuropathy (HCC) [385580]
Senile incipient cataract of both eyes [1045895]
Retinal drusen, bilateral [971818]

The doc did not explain drusen. I read up on it. It may….or may not be…related to macular degeneration. Who knows? I just wanted to run away. This doc was miffed with me. He keeps telling me I need to do daily flax seed oil. Each time I ask with what money??? He absolutely does not understand the absence of funds. He thinks I just don’t want to spend the money. Sigh…..

I then went over to the main hospital to use the only truly handicap accessible stall I know of. Then I sat in the cafeteria long enough to call the cancer center. I asked if I could come over to get my port flushed. No problem. Dang! That woman was great:-) I never even felt a speck of pain, and she was done in a flash. I told her about how my port had felt like it wanted to pop out of my chest last month. We were both relieved when the port worked great:-)

On the way home, I got off TRAX and went to Trader Joe’s and Smith’s. Used up the last of my SNAP. I would like a few more fresh fruits and veggies one of these days, but am OK for now. I totally forgot to buy some cat food even though I had it written down. She only has half a bowl left. But…I did stop on the way home and pluck a couple of fresh sprigs of catnip. Get her stoned and hope she doesn’t get the munchies, I guess.

Soooooo…..I get home and the Google guys are in the apartment across the hall. I ask if they had already done my place. Yup. I go in to find all the carefully stashed stuff from my closet, that I had put it the corner, now strewn across my bed. Everything that was in that corner was out. Looked like they hadn’t even touched the closet. Geezum Crow!!!!! Can’t win.

After putting away groceries and resting an hour, I put the bedroom back together. I hope Google is done with my apartment. There was a long line to see the manager when I was leaving for my hospital appointments. All were mad and confused about what they needed to do to get ready for Google….especially what to do with pets. I hope they got better advice than I did from the hangtag and newsletter.

I have done pretty well today. It took until 4 PM for the Medrol to start wearing off. I am just now starting to drag….but even so, I have tons more strength and energy than before steroids. I was thinking about my left foot. It is nowheres near as painful with steroids on board. It seems like every single thing wrong with me is related to inflammation.

I got my blood test results back today! I go in to see the CNP first thing Tuesday morning. I am looking forward to hearing what he has to say. This was the lowest SED rate I think I have ever had! It was actually within normal parameters. Normal is 0-40 and I was 36. Sounds excellent for me! But, then I got to CRP, another measurement of inflammation. Normal is 0 to 4.9 and mine was 42.8.¬†Neutrophils normal range is 1.4 to 7 and I was 7.9. Normal white blood cells are¬†3.4 to 10.8 and I am 10.7. Is it an infection? Is it something else? The more I look up, the scarier it sounds. It could be heart failure, liver cancer or an autoimmune flare-up. Loads of fun. Sigh….

OliveSniffingGoogle

The new Google thing-a-majig is the whitest box. Olive was licking it and thoroughly sniffing it. Then she switched to catnip:-) I am liking the minimalist wall better than the 2 chairs over there. Echoes in here.

Olive&Catnip

All weekend and today, the news has been full of pics and stories about wind damage. Turns out there was one gust of 91 mph. Lots of people without power and extensive tree and structure damage. Today, here in SLC, it could not have been more gorgeous! 70’s, a nice breeze, blue skies, full leaves on trees and the mountains are snow capped. Nice:-)

tamales

I have been eating only one meal most days. When I got home from the hospitals I had 2 tamales. I miss all those tomatoes and avocados!

Ugh….gut distress and sooooooo tired. It has already been a long day.

So many marvels!

I slept deeply and peacefully last night…with only one trip to the bathroom. When it was time, I woke up slowly and comfortably. The first thing I noticed was that I was not horribly queasy. I just sat up in bed! It was not like climbing Mt Everest. It did not make me short of breath. I stood perfectly still and put on my nightgown over my head, while raising both arms. I walked to the bathroom with only minimal pain. I lightly held onto the walker instead of clinging to it for life. I both sat down and stood up from the toilet without using both hands. I just moved in space without support. I shot up my insulin without being doubled over in pain. I easily drank down my juice with Miralax. There was no trouble raising my arm and no trouble swallowing! I was not mind bogglingly dizzy. I could see just fine. As I filled my weekly pill box, I realized it was easier to think. I was not doing everything in a stupor. The cloud had lifted.

The difference in quality of life is HUGE! It’s weird that I accepted all my difficulties and figured there was nothing to be done about them. I thought without IVIg, I was just stuck being permanently miserable. Unfortunately there are drawbacks to steroids. After awhile, the side effects build up and are as bad as what was wrong before. Steroids raise blood sugar, weaken connective tissue, cause weight and fluid gain, accelerate cataracts, cause a feeling of “permanent PMS”, etc, etc….

breakfast

I had gotten up at 3 AM to take my night dose of Mestinon and Motrin, so I wasn’t due to take more until 9 AM. I finally remembered at 9:30. Then I got up to make breakfast. I made hash browns, eggs, tomatoes, half onion, half avocado, 2 slices Provolone cheese and some Hatch Valley Salsa (for $2.33). About half way through I got SOB, it was painful to stand, I got wicked bad dizzy and I felt sick again. I sat down with my plate of food and gulped air. I struggled to breathe a few more minutes and realized DUH!!! I had not yet taken the Medrol and Plaquenil.

I got a good loading dose Friday/Saturday because I took 6 pills Friday night and 5 pills Saturday morning. Today I only took 4 pills. I hope the feeling of well being comes back. At almost noon, I don’t feel well at all. Boooooooooo……hisssssssssss…..

My neck/back of the head is swollen up, I hurt all over, I’m queasy. I am bummed! I found myself once again hunched over and leaning as far forward as possible so I can breathe. At 3 PM, the wicked bad headache hit, my right arm doesn’t want to lift and my lymph nodes in the groin area are back to being painfully swollen. I am starting to hate life again. This sucks. I need more steroids.

The good news is the lesser dose of steroids hit around 6 PM. I can lift my right arm again. I am in limbo between feeling OK and crying about it. I have been going back and forth according to how well my meds are working at that moment. I sure would love to be put on a daily dose of steroids to keep me feeling well and even. But…..all that would be unnecessary if I just got regular IVIg. Steroids have a lot of bad side effects.

I have come to realize how unimportant I am in the scheme of things. An old, poor woman is not worth very much. Few people want to waste resources on me. Utah sure doesn’t.

olivestares

Olive is my guardian cat. She is very conscientious about reminding me to take meds. It’s me who needs to remember what she means when she starts tapping me with her paw and meowing.

Expenses

Here’s an article about how much it costs a single person to live in a city. Poor and disabled folks like me need to live in a city for public transportation, sidewalks for my power wheelchair, access to groceries, nearness to hospitals and docs, etc.

Here’s a graphic about food costs in Salt Lake County.

slc

Sooo…let’s assume it costs $2.84/meal to eat OK, but not fancy. That’s $264.12 for a month. I get $91 SNAP, so I need to come up up with $173.12 in actual cash to eat. Just rent and food would add up to ¬†$723.12, leaving me $9.88 for everything else for the month. Not possible. The SNAP benefits formula assumes¬†other money is available. Ummmmm…from where???

I am going through my notes and trying to come up with a totally realistic budget. How much does it really cost to buy what I most need and want? There is absolutely no way I can pay for necessities on $733/month. It’s just not happening.

Rent $550/month. 75% of income

Medical co-pays and over the counter items @$60…prescriptions, doctor visits, generic Miralax, probiotics, generic Zyrtec, stool softeners, vitamin D. 8% of¬†income

Internet @$50…that’s scary right now. This is the last month before service doubles in cost and no one seems to know how much the lowest Google rate will be or when it will become available. With no internet I would not have much of a connection to the world. 7% of income

Supplies @$30…toilet paper, kleenex, dish soap, dishwasher detergent, cinnamon toothpaste, shampoo, hand soap, lotion, tea tree antiseptic, etc. 4% of income

Cat @$20…litter, dry and canned food, cat treats, toys, shots, vet. I feel better after reading this article. Everything I list as an expense makes me feel soooo guilty!¬†3% of income

Laundry @$20…soaps, dryer sheets, spot remover, machines¬†3% of income

Personal…haircuts, whatever else I might need…(only $3 left of $733)

What I have no money for…..many things people take for granted… dental care,¬†over the counter meds that docs tell me to take,¬†clothes, shoes,¬†replacing things that break or wear out,¬†restaurants, movies, Netflix, cable TV, make-up, hair coloring, a vehicle, gifts for other people, postage, going to an event, buying myself a present, anything frivolous, occasional¬†treats, decent furniture, savings, going on trips,¬†anything!

Food….with what money??? I already spent more than $733. Sigh….

Tithing….there is no money left for that.

chart

Approximate minimum cost for things, in dollars. My reality is depressing :-(

My brain cells must have taken a nap

This morning I got right up out of my chair and easily walked to the bathroom with my walker. I was pleasantly surprised. It has been quite an ordeal for a while now. Then I jumped up off the toilet. Really? What the heck? As I was standing there washing my hands without swaying back and forth I realized, DUH!!! I took Medrol last night and this morning.

Later I was in my bedroom and started stripping the bed. Again DUH!!! I finally had enough strength to do it. A bit later, I put all the laundry in containers and got ready to go to the laundromat. Then it hit me…the only reason I was absentmindedly roving around doing stuff was because I was in less pain and much stronger BIG, HUGE DUH!!!!!! Made me feel better about myself. I realized that there’s a whole list in my head of things I want to accomplish, but I never feel well. The second I do feel better, I start doing stuff without even consciously realizing why. Cool!:-)

braincells

I like that kind of absentmindedness light years better than what kept happening last week. I dropped my phone when it rang, because like an idiot, I quickly reached out and put it to my ear. Searing painūüė¶ I lost count of how many full or almost full cups of water met the same demise. I forgot my arm didn’t work until it was too late. And….there was a plethora of other objects that also got dropped or flung because, well, duh!¬†It’s interesting that although I feel great pain, my brain forgets to stop the rest of me from doing¬†stupid stuff.

Guess what I did?!? I did all my laundry…even the comforter. It took 4 of the big horizontal access machines. My right arm only felt slight pain. I dragged it all there and back with my chair. It seemed so easy:-) This must be what it’s like to be normal!

I made brunch…eggs, sausage, canned tomatoes, half an avocado, half an onion, 2 slices Harvarti with 2 hash browns and Hatch Valley Salsa. ($1.73) Never even thought to take a pic. I was not swaying all over, I was only mildly SOB and I was able to finish cooking without my usual bent over the counter excruciating pain:-) I have gotten so used to monster pain and my whole life majorly sucking, that I forgot what it feels like to only be in mild pain. Wow! I am going to make one of the docs prescribe long term steroids. I don’t care if it kills me. I have been among the living dead way too long. It feels like I escaped from a torture chamber. And….I am not queasy! I totally forgot what it feels like to not be nauseous 24/7. That’s doubly amazing because the first 2 weeks of plaquenil are usually gut wrenching.

By 3 PM, I was wiped out tired. Took a 4 hour nap and actually feel refreshed from it! Amazing:-)

stormfront

The forecast was for some wind. About 8 PM we got really strong gusts. As I felt the temperature drop, I looked up. Cool! There’s a dramatic front rolling through. I like the way the trailing edge is rolled up into itself. Beautiful! Even though it looks ominous, the forecast for Sunday is warmer temps and sunnier skies than today. We have already had 75 mph wind….and the forecast says it’s going to be more intense over night. During the biggest gust so far, I could hear big things snapping. TV news says trees and power lines are down….and that these are hurricaine force winds. Dang.

There was a hangtag on my door from Google. They want me to clear out my bedroom closet, secure my pet and be ready for a 2 hour installation any day between May 2nd to the 16th….from 8 AM to 7 PM. Whoa! Major impositionūüėģ ¬†Ummm…where do I put all my clothes? Where the heck do I put Olive? And it all has to be done every day for 2 weeks? Are you kidding me? I am anxious for Google, but certainly NOT excited about what they want from me and every person in this building. Geezum crow! And on top of that, apartment inspections are all day May 5th on my floor. So I need to mess up my place by taking everything out of the closet…then get inspected for cleanliness! Grrrrrrrr……..

For a couple of years, and more intensely for the last 6 months, I thought I was going to be moving away from SLC. I thought I was going to move to a special small dwelling unit just for me. That fell through and then I was going to get a wheelchair van. That fell through and I was supposed to get a used mobility bus. Now it is officially all out of the question. At first I was devastated. Once the shock wore off, I realized just how much of my life has been put on hold because of those plans.

I was saving certain foods for the road. I was not buying things in bulk. I was disconnected from people here. I hated Utah more than ever when I thought I was escaping. I quit trying to push for better health care since I thought I was leaving. I totally put my life on hold and anxiously waited to be saved. Now that I am bereft of that hope, I feel incredibly free. I can go back to crafting my own life. I can quit waiting and hoping….and get back to being captain of my own destiny. All along I knew depending on other people was a bad idea, but I tried it anyway. Ironically my rent went up just when my other plans fell through. But….now that I am sure that no one is going to sweep in and save me, I can look for other solutions. I made no other plans because I thought it was a done deal.

I like the combo of feeling immensely better along with lots of possibilities to explore. I have more hope now than I have felt for a long, long time.

survivor

What next?

life-throws-curveballs

It has been one of those days/weeks/months when too many curve balls have been slung at me. The bad list:

Thursday Olive chewed through my computer cord…again. I let down my guard and bam!

Today I discovered Olive chewed into the lamp electric cord so many times that it’s holey and ruined. I am glad I noticed before turning it on! Why isn’t she electrocuted? Apparently she has beaten the odds so far ¬†:-o This is new behavior!

OMG!!! I just checked many of the cords. She laid bare the extension cord for the fan, too. I threw out the lamp and extension cord. Sigh…

I got confirmation that my hernia can not be repaired.

I found out that angioedema is a much worse disease than i thought it was…and that many of my medical problems involved angioedema.

The rent went up to 75% of my income.

I am still too weak and in pain to do my laundryūüė¶

The sleep center called to give me the results of my overnight oximetry. I was bad. I stay at 5 liters for now.

There’s something strange wrong with me. I don’t know what it is yet. I sent an email to the CNP’s nurse this morning. He said they already have the blood test results, but the CNP hadn’t reviewed them. I waited all day for an email or call. Nothing. The pain is wicked bad intense. I left a message that since I have not heard back, I am going to start my meds. I downed 6 Medrols from the dose pack and a plaquenil.

And there’s a whole bunch of private, mental angst is woven through everything..

The good list:

GoogleTubing

Today I found out that this building is being wired for Google. I already assumed that since the orange tubes are sticking up, ready to be connected to the building, but today the manager told me it’s for sure.

I am supposedly going to get a new and more functional wheelchair.

IgM

Structure of the pentameric IgM: 1. Base unit, 2. Heavy chains, 3. Light chains, 4. J chain, 5. Intermolecular disulfide bonds.

I discovered a better way to search for info about low IgM. The code for it is under Selective¬†deficiency¬†of¬†immunoglobulin¬†M [IgM]. I have become real curious about my deficiency of IgM ever since my insurance company decided to give it the (HCC) designation. That’s¬†Hierarchical Condition Category (HCC) coding. By having this coding on 4 of my diagnoses, doctors and hospitals get a higher rate of reimbursement when I get treatment. I am still trying to grasp how they picked out these 4 out of the 33 diagnoses from the major hospital/doc group I see.

Myasthenia gravis (HCC)

Diabetic neuropathy (HCC)

COPD (chronic obstructive pulmonary disease) (HCC)

Decreased Immunoglobulin M (HCC)

I am thinking they get to lump many of my problems under the umbrella of these 4 categories….especially the low IgM. That can be for every one of my infections and autoimmune issues.

What is incredibly ironic about the MG and neuropathy HCC designations¬†is that the idiot neuro I first saw in Utah, vehemently denied I had those diagnoses. And when it comes to selective¬†deficiency¬†of¬†immunoglobulin¬†M, the immunologist said there was nothing to be done about it, he knew very little about it and he downplayed the diagnosis. COPD is a diagnosis I have had for decades. I suppose that is what my supplemental oxygen is covered under. That’s expensive.

Another very, very ironic thing is that IVIg is used to treat MG, angioedema, IgM deficiency and some of my other autoimmune diseases….yet Utah does everything possible to make sure I do not get it. It’s handy for them to put HCC after those diagnoses without spending any more than they can get away with.

I went to bed at 7 PM Thursday night. I felt physically and emotionally beat up. I was rudely awoken at 3 AM when the power went off, so the CPAP and oxygen concentrator quit. The o2 concentrator lets off a piercing screech. That gets my heart pounding. Well….my chest hurt so bad that it went down the front seam of my ribs and right through to my spine. It was too painful to stay in bed. Soooooo, here I sit, trying to occupy my mind to try to ignore the pain. My arm got on the bandwagon.

The swelling of my underarm lymph nodes keeps getting better and worse over time. When swelling goes down, I am surprised at how deep the pit in my armpit really is. The whole thing induces waves of queasiness. The worst thing is that when some of the lymph nodes drain, others swell up even more.

Huh…an article about MG popped up on my FB feed. Glad I didn’t miss it. ¬†Rare Insight: A Physician‚Äôs Perspective on Myasthenia Gravis

There’s a lot on my mind. I am feeling knocked about by the bad list.¬†Here’s hoping I can add some things to my good list!

Lied to

The manager said there would be no rent increase since we got no cost of living increase from Social Security this year. Bullshit! I just opened my door to find a letter clipped out there. It says that beginning June 1st, my rent goes from $525 to $550. That’s the largest incremental increase since I moved here. That means that rent is now a bit over 75% of my incomeūüė¶

My armpit is still exuding sticky stuff on my right side. It hurts like heck. Can’t wait to hear what’s decided about thatūüė¶

Just shoot me now….

Now that was interesting!

My regular GP had no appointments available, so today I saw a guy who’s a certified nurse practioner. I was thinking he would be scared by someone like me….and that he would not know much. It was just the opposite:-) That was fun!

I told him¬†about my arm being so sore and that it started with swollen lymph nodes in my armpits. We went through a bit of my recent past history and then my life. He kept suggesting meds and I kept shooting them down. I explained that most meds just make me worse and the only thigs that make me better are steroids and IVIg. He suggested Cymbalta, Neurontin, Lyrica, methotrexate, lidocaine gel, tramadol, various opioids, etc. He decided I need IVIg. Ahhh ha ha ha ha ha. I had to explain Utah, me and IVIg refusal. He wanted to know if the GP had gone to bat for me to get infusions. Yup….wrote me a prescription for IVIg and tried to fight insurance. He said he valued his income and job, so he was going to hold himself back from doing bad things to the powers that be. Snicker….

I never told him what meds I had in mind. It was all his idea. He prescribed a Medrol dose pack and Plaquenil. I now have a great deal of respect for the guy. We spent an hour together. I messed up his 15 minutes for an appointment schedule. Seems I do that at most doc offices. Sorry.

The CNP traced the path of some nerve on his arm. I told him that was exactly how the pain in my arm is. He thinks lymphs are pushing on the nerve. He found the exact spot between pit and elbow on the inside of my arm where there was a swollen blob under the skin. He touched lots of places, but when he got to there, I screamed and flinched and jumped. Sorry. He did not get personal with my pit. In there are a bunch of lumps.

A woman came in to draw blood. Amazingly she got me on the first try and I felt absolutely nothing. I have to wait for the results of the blood test before starting my new meds. The theories are flare up of my autoimmune diseases, an infection or lymphoma. He confirmed my stupid angioedema everywhere. I was surprised how much he knows about angioedema!

The guy was a good sport. I was happy and cheerful most of the time. When he found the sore spot and when I moved my arm later on, tears burst out of my eyes. It was a very fine line between my cheerful veneer and the wicked, wicked bad pain. He got that. He must have asked me half a dozen times if I was sure I did not want narcotic pain meds.

Since I have been home, the left side of my neck and up my head has become painfully swollen. There are painfully swollen lymph nodes all over me. He says they hurt because they get so big and push on other things. Ack! Just make it stop!!!! I am looking forward to getting back on medrol and plaquenil. If I cannot get IVIg, I desperately need something.

freaky

Geeze! Now it’s after 5 PM and the right side of my face has drained. Now it’s thinner than the left. Nice lopsided look! Put your hand or a piece of paper over one side…then the other. Two different people, one head. Also, my armpit has been draining. I think all that poking at lymph nodes got the ol’ lymph flowing again. You know what’s really creepy? My right pit is exuding some kind of odorless, sticky substance….nothing on the left. I feel a bit feverish. My head hurts pretty bad. Finding all this interesting is absolutely a coping mechanism. It’s better than non-stop crying!

meal

I’d say one meal is enough for today. This was brunch. Eggs (free), sausage (free), onion.50, zucchini .50, mushroom .34, tomato .30, Mexican cheese $1, 2 hash browns .38, Sriracha bbq sauce .37. That costs $3.39.

Yuck. I don’t feel well. Can’t think any more, either…..

Please send sleep!

Monday, I stayed awake until after midnight and went to bed. Lots of popping sounds. Next thing I know, the cops are here. So much for sleepūüė¶ I was twisting and turning anyway. Too much pain. My armpits are grossly swollen. There is NO comfortable position. The pain makes me feel like barfing.

A Democrat is going to run for governor of Utah. He announced his wife is being investigated because she uses marijuana for medical reasons. Stuff like that has been in the news so much that I have wondered if it could put a dent in my pain. I refuse to take narcotics and I already take massive doses of ibuprofen. Of course, no Medicaid program is likely to fund medical marijuana¬†any time in the near future. Sigh….

I am going to have to go begging a doc for something. My life sucks. I loathe tramadol. What else is there that won’t have tons of side effects? At this point, pain is consuming a huge chunk of my life. This is crazy.

I got up around 8 AM, less than 5 hours of snoozing….and it was very fitful sleep. My arm was much worse this morningūüė¶ It was to get excruciating. There was less and less that I could do with my right arm. The pain was so intense that it gave me a pounding headache and supreme queasiness. This is a different pain than what I believe was bursitis/tendonitis. What the heck???

brunch

Brunch was 2 hash browns .38, 2 eggs (free), zucchini .50, half onion .15, 1 large mushroom .34, Mexican cheese $1, Sriracha bbq sauce .37 for a total of $2.74.

At the most effective time after Mestinon and Motrin, I was able to make brunch. It felt like a Herculean task. I have discovered that I need to force myself to eat, or the queasiness only gets worse. The only way I can eat is by plastering my arm against my side and only moving it from elbow to hand. But….the pain got way worse.

By 3 PM I could not deal with another second of pain. I went to bed. Around 5:30, my phone rang. I ignored it. Then there was a knock at my door. I ignored that, too. When the phone rang yet again, I hid it under my pillow. Then there was a long time of insistent knocking. I got up and slipped on a robe. It was 2 guys. I had bed head, was wearing a less than fresh robe, had to pee really bad, so told them to give me a minute. The door automatically slammed in their faceūüėģ

I went back when I was ready, and let them in. It was the usual man from Medsource and some guy who was more dressed up and started measuring my doors, me and the chair I have now. It was extremely embarrassing. I was whimpering in pain, with tears leaking out. I kept trying to smile while crying. Not only did my arm hurt collossally bad, but my back was crunching….sending sharp pains down my spine and also making me numb. I just wanted to crawl in a hole.

Made me happy when they asked what color chair I want. I picked pink. Told them my younger self would roll over and die at that choiceūüėõ The new guy went over the PT’s component choices and changed a few…to more expensive and more comfortable options. I will believe it all when I see it.

My voice was totally broken the whole time. I showed the new guy how I could briefly talk normally by lifting my lid. He was taken aback. Snicker…¬†I hate, hate, hate my broken voice! People tend to think of me as mentally challenged. If I can talk normally for a few seconds, it changes their perception of me. Makes me feel a little better.

sandwich

Since I was dressed and in my chair, I went out and got my mail. Just grocery flyers. I fled back to my apartment before I cried in front of anybody. I kinda went crazy trying to figure out what to eat that I could prepare quick and eat with the least effort. I made a deconstructed tomato and bacon sandwich….and had to throw out most of the loaf of bread I got off the free table on Saturday. It was full of several kinds of mold. Ick. I just cut out good parts from a bunch of pieces for supper. ($1.40) That’s $4.14 for the day…plus snacks.

tamales

Here’s what I had yesterday. Tamales for brunch ($3.74), eggs and veggies for supper ($4.20) Wow…a pricey $7.94 for the day…plus snacks.

supper

Update on messages. I discovered the wheelchair guy sent me an email at 4:20, a text at 4:21 and a call at 4:22. Then he called and texted again around 5:30. I must have slept through a lot of buzzing and ringing! I thought it was less than 5 minutes between calls. I must have deeply conked out in between.

So…how long will I have to sit up tonight before the sleepiness overcomes the pain? I woke up to find an email from a nurse saying they will get me in to see someone on Wednesday…but by the time I saw the message it was after 6. I hope he gets back to me early tomorrow. Honestly, I think I am reaching the end of my endurance. So far, each time I thought that, I have gotten better. We will see….

 

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