halt stop forget relax

"i do get my dates mixed sometimes  think of how much i had a chance to forget"* DH recently recounted something from our distant past, some 28 years ago, and I swear I was not privy to that conversation,  so who is correct, him or me? There is no way of knowing for sure.   (This would be long term memory loss.) DH tells me to do something on the computer, then leaves the room, and I turn to my laptop, take a sip of coffee, go to the website and have no fucking idea what I am supposed to  do now that I'm there. (This could be recent memory loss.) Sometimes I am discussing something with someone and I hear a distracting bit of information elsewhere in the room (TV,  radio, any distraction) and I don't know what I was saying. (This would be short term memory loss.) Another turn of that same coin is starting to say something and simply losing my train of thought "Oh well, it'll come to me sooner or later." Then there's that darned prob...

Every meal I have had here has been, to put it in a word, awful.  I mean, seriosly , who the fuck can eat this shit? In the beginning I complained to my therapists, PT, OT and Speech, who always asked, "How was lunch, or dinner?" seemingly making comversation. I didn't realise they were reporting back to the head dietian every word I said!  Then the manager comes to visit me (not once, but twice) and asks how I like the meals --  what am I supposed to say?  That they suck?  No. I tell her that they are a far cry from what I am used to - which is true, and then I further soften it by telling her that I understand that she has to cook on a budget, and I don't expect organic food here, and she has to do what she has to do. What I didn't say and what I do expect is to get what I ordered from the menu. Oh, how I wish I had kept all of the lunch and dinner daily lists that came with my food. I swear there was a mistake on every single one of them! There were ite...

I  don't know how I will get there, whether by car or Shuttle, those are details to be worked out by othes, all I know is that I am getting out of here. Alive. I want some real food; I want to make a smoothie. Hell. I'll even put some whey into it to add some protein. I went head to head with a nurse today about adding whey to my diet. I asked her what they were going to put it in, and she had no answer. Juice, I offered? Or perhapss the Glucerna? (like Ensure).  So I declined. She had me fill out a form saying why I declined. On the form it said that by not taking the whey, my protein levels would go down. I told her that was not true -- that my protein levels would stay the same. She changed it, but didn't like being questioned (or corrected). I suppose I could have put it in my yogurt, but I kind of like being contentious. Damn, I'm glad I have (some of) my wits about me again.  Now I just have to work on getting stonger muscles. Good Day, TTYl, and Be Well, ...

Thus goes the story of my life. . . In my last entry, far too long ago, I warned you of the problems that can be caused by edema; most notably edema of the feet combined with tight fitting shoes which is what landed me straight into the arms of Dr. S at the Wound Clinic and on to her protocol of "no weight bearing" for the last 10+ months. MS is hard enough to deal with by itself; managing the secondary issues makes it all that much more difficult. My journey into this 'short-term rehab' facility began with a Staphylococcus aureus infection in the pressure sore in my right foot that migrated to the bone. At the same time I had a persistant UTI. Skip back to the afternoon of July 17. For the previous 20 hours or so, DH was worrying, taking my temperature, my pulse, and watching me sleep the sleep of the dead, until he finally tried to get me up and saw that I was slurring my words and not making much sense. My temperature was low for me at 95.5. My pulse rate w...

If I had only known then what I know now. Last Summer in the PNW was a warm one. Warm weather often leads to a swelling of the feet for me, and so it was last year. I had bought some cute slip on gatas from Land's End. They were made of a light weight canvas, and were not stretchy at all. I noticed, when I took them off at night, that there was a big imprint on my foot where the shoe had been. That puffiness on my foot was edema. It never occurred to me what kind of damage this was doing. I had noticed that the balls of my feet were sore during the day, but after having learned to sublimate pain that comes with muscle spasms over the 30+ years I have lived with MS, I just accepted the pain, not giving it much thought. What was happening, however, was that I was getting pressure sores on the balls of my feet that were cause by the swelling.  When I went to see a Dr. for something un-related, I mentioned the pain, and she examined my feet. The next thing I knew, I was referred t...

Hello dear readers; I hope I haven't lost all of you as it has been so long since I have posted anything. My thought was, if I don't have anything good to say, better not to say anything at all ... but that leaves me here trying to catch you all up on my current situation in which not all is bad. (Now wait a few minutes while I refresh my memory on what you already know - I'll be back in a few...) All right, then. So, in January I started getting a chore worker for 66 hours a month. I started out with Gayle, who stayed with me until the end of the month when she had to leave because of a paperwork snafu. In February, while she was gone, her replacement was Joanna who was young and clueless about the job. She would silently walk into where I was and just stand there. I would look up and say, "What do you need, Joanna?" "I just wanted to know what you wanted me to do next." "Well, take your pick: you could dust, vacuum, find  some laundry and put...

I forgot to take my memory mint today, so, I'll post it again, likely with changes. Biggest joke (and disappointment) -- MS drugs. They are all "disease modifying" and not "disease stopping."  I guess there's no money in finding a cure for MS. Biggest rip-off - Ampyra.  This was available before the pharmaceutical company got hold of it and tweaked its formula to call it its own so they could charge $1200 a month for it instead of the original $40 or so when it was 3,4-AP [aminopyradine] and you had it made at a compounding pharmacy. [was that a run-on sentence or what?]  Also,  it was hard to get a Dr. to give you an Rx for it then, too. Wonder why? Biggest joy - Ella Minnow Pea. This was a totally delightful book an I still recommend it. Biggest Good-for-Me - Continuing  to do Zentangle despite my shaky and numb fingers.  I can see the difference from two years ago! Also am having some ON issues. Aaargh! Biggest  Obstacle - MS, and al...

Today, the day that sha ll remain "in inf amy," my computer went to bl ackscreen a t the auspicio us time of High Noon.  It is only because we retained my first la ptop that I bought i n 2000 (or so) , a Dell Inspiron 8000, that I am able to post at all. I ha ve, at leas t tempora rily, lost everythi ng -- and I can't tell you when I l a st ran a b a ck-up , becaus e that's not my job; I don't "ge t" computers a nd don't know of such things, and the powers tha t be , while adept at, say, gett ing this old thing to keep on working as our f a ll - back 'puter, isn't so current on ma intaining my other one. Life sucks; MS sucks, and I 've just dropped a bo a t-load of money on two new pair of eyegla sses. Sea rs d oesn't h ave the offers they used to. In s tead of letting me use my old regular frames for my new r eaders , they ha ve changed all of their len s-shapes so that you have to move on to a newly shap ed frame -- also...

  Yeah, that. Now, in addition to having pressure sores on the bottoms of my feet (which are getting  smaller with time), my tiny sores on my bum have morphed into one larger sore which, while not actually meeting Medicare requirements for the medical equipment they should have dispensed to people with worsening MS, but didn't, I now have  shown at least enough progression that my Medicare Supplement Policy has agreed to buy me a semi-electric hospital bed with an APP mattress, a RoHo cushion for this piece of shit chair, and a Hoyer lift.  Now the bed and mattress will allow me to lie on my side, relieving the pressure, and when I am back on my feet, the seat will be very welcome, though I am not sure how much time I will be "allowed" to sit each day. They should be here before 2 P.M. today. Can't wait, though my bedroom will need some major moving of dressers etc. before I can reclaim it as my own. 888888888888888888888888888888888888888888888...

HAPPY FALL EVERYBODY! Isn't it amazing how fast it has made it through this season? I used to love kicking though the leaves that weren't swept up on the sidewalks, and collecting horse chestnuts and buffing them to a nice shine. When I was a kid I planted several right next to the side of our house, and my Mom got mad at me because by then then, in one year, they were two feet tall! At least they were easy to pull out. 888888888888888888888888888888888888888888888888888888 I've had a rough patch lately with more optic neuritis. This is impacting both my blogging and my reading of all those mysteries and 1000 books DH loaded on my laptop.Talk about bad timing. Fortunately I have had the occasional day when the ON abates and I can read or do the Zen thing,  but I have to be careful because I am also noticing a bit of double vision. My MS sucks for sure. Right now I am working on a 9x11 piece which I plan to mat and frame to hang somewhere; perhaps in the...

Ever want to say, "Whoa, Willy!!"? Me, too. Life hasn't been kind to me lately, and it's not the MS I'm talking about. It's my new chair, and it's Medicare, and it's sales people who don't really give a damn, and it's Drs. who let orders sit on their desks because they are too busy to catch up on their paperwork which I imagine is tremendous. Well, MS did play its part in the story, I guess, because without it I wouldn't need the chair in he first place, now would I? But it now plays just a bit part in this drama. I have needed this chair for quite some time, at least according to my E-mail records, going back well over a year now, in 2012 when I was trying to get ahead of the game and getting a mobility assessment from a PT and being taken too literally from my doctor  (my PCP) who took me off that year-long list after I expressed my upset wait for one. [talk about a run-on sentence!] Really? And now she treats me just l...

I am still thinking about a real post for you, but in the meanwhile I am linking to another giveaway. I want to win this manila art journal from Greene Earth Originals. I  did start writing my "real" post but my husband barged in to give me a DVD and unplugged my computer in the process, so I lost everything I was doing. Er, argh!!  When my fingers wake up and I have had a ccup of coffee, I promise you I will write that post.   n the meanwhile, Good Day,  TTYL and Be Well,

I am entering a contest to win a Halaby Aero Flightbook... “Notebook Stories”has   a wonderful collection of various  notebooks to choose from, of this being one. Wish me luck.

 Yesterday I watched Mrs. Doubtfire  "I saw him; I think it was a run by fruiting" ; today it was Dead Poet's Society, in memory of Robin Williams. What a fantastic performance. I don't know why, but it surprises me how rigid and ignorant many people are. This movie brought me to tears in the end. I couldn't help it. Sniff, Sniff. I guess it's on to another one on the list. I will check to see what's available on www.tubeplus.me   where I go to watch TV and movies for free. Makes me wonder why I am paying $20 just to be connected to regular TV which we so rarely watch. TTYL,

First, I turned 59 on the 24th of July. No cake, no presents, nada. It was a little disappointing. Next year had better be different!! It will be a landmark birthday after all. ** We have celebrated another anniversary! We were married on the hottest day of the year in 1987; It was August 8, 1987 -- 27 years ago. Sometimes it feels like 27 years, and at others it feels like no time at all. We both have brought baggage into the relationship. With me, it was MS; and with him it was his predisposition to depression. Together we are quite the match. I am a Leo and he is a Taurus, which is why we are stubborn enough to make it work. I have other thoughts about that which I will keep to myself. ** Last Saturday two friends from sorority dropped by to deliver a free Canon printer that was left over at the yard sale. I wish I had known which model it was, because it turns out that it is one of their cheaper models, and it was not like the one that we had that has a messed up printer head...

While I am  glad that I got this lovely new chair, it is not without its problems, the latest being the back seat cushion. Basically parts of it are a piece of shit   cheaply made product. I have had it for, what?, four  weeks,  and the back cushion which is attached by velcro strips slips down so that the bottom of it is behind the seat rather than above it. That means that the lumbar support, which is also attached with velcro is not supporting my low back. Any other options that were available weren't presented to me because it was being paid for by Medicare and Medicaid, and therefore not covered. Oh well, it is what it is: too big for my house, and too cheaply made. All the money went into the technology for the tilt and recline functions, which are pretty darned cool. I can take a comfortable nap in this thing. Well, the hot hot weather that was predicted turned out to be just cloudy and hot weather, and perfect for the family BBQ/Picnic that I had arranged...

After several hours of  dealing with the timesuck that Google+ presented, my dear sweet husband has fixed my long lost (to me, amyway)  entrance to my blog. This means that I will no longer be using my blog of the same name over at WordPress, as I don't want to climb the learning curve it presents to me. So welcome me back dear readers, all seven, or so, of you. Now I get to go to my reading list and catch up on what many of you have been up to -- so check you comments (hopefully they show up in your E-mail). TTYL and Be Well,

Yes, today's the day. It is supposed to be delivered at 1:30 PDT. House is a mess and DH is sleeping, but what can you do? More later. Webster

After all this time and angst I finally got notice from my insurance company (but not from the sellers) that my Quantum Edge has been approved. Now the sellers got their notice too, but are waiting for hard copy to proceed. My letter came two days ago, so I assume they got theirs then as well. Now they have  to send it to the purchasing department. and from them I will find out how much my copay will be, possibly as much as $5000! Since Obama care has required all uninsured people who cannot afford an insurance policy to go through DSHS, DSHS has cut off certain services they were paying for me. I don't think they are going to pay for my co-pay since I was just billed for the one when I saw my PCP. I have been using a Jazzy 600 that was given to me by the guy who bought my brother's 1980 truck. It's too big for my house. I have to take one arm off so I can make it through the doors, corners are tight, it's a bit uncomfortable -- but it was FREE! It  also has some soup...

My brother likes to wheel and deal; it's just the way he rolls. So when a neighbor of his expressed an interest in buying his old pickup truck, he said, "So what do you have  to trade?"  It turns out this guy has a wheelchair (brand unknown) that he says is worth about $50000.00 and he offered up that. My brother took him up on it and it will be brought over to me on Saturday. I don't know his story behind the wheelchair, but I will find out some of the background then. I have no idea how old it is, just that it is an electric chair and has some super-duper type batteries and will go up hills with  no problem. I HOPE it will fit my rather large butt comfortably, and will work out well for me.  If not, as my brother says, I can always sell it. As for the Quantum Edge -- It is still is review by the insurance company, and I'm not due to have a response until July 3. I looked over the paperwork that was sent in by my PT and my PCP, and things have changed with me...