Tuesday, April 30, 2013

Storm coming in and this may be a rush, but...



My glucose fluctuated on and off oddly enough from 269 down to 97, just yesterday and last night, which is just great, i.e. the 97!
Six units was given for the two occasions that I needed it for over the 250 and zero for anything below 150, even though when it hit the 150 which allows for two units, I decided not to bother and it cooperated and within a half hour it went all down by itself down to 128!
The 97 was after we got back from the gym, which I did go to today. Back at the same ten minutes on the arm cycle and two sets of twenty-five on the slanted board, especially with all those steroids in me I need to exercise to prevent this weight to go any higher! I am considering extending the reps or perhaps going three instead of two days a week and sticking with the reps as is, will have to think about it…
I was motivated and also very tired and that might be why I might wait on my current ideas for now…

I did make homemade clam chowder for lunch when we got home; clams are quite high in selenium and it does have anti-oxidant benefits, but be cautious in too, since too high a dose it can be harmful, here’s what I found about it on this site: http://www.webmd.com/vitamins-and-supplements/lifestyle-guide-11/supplement-guide-selenium
I thought it would be a help in healing me.

The storm is rumbling nearby and so this will be a shorty for tonight. On occasion we lose power and do want to post before that might happen and so… allow me to be the very first to wish all of you a very happy good night and to ask you to kindly count all your blessings and share those overages with you know who and we will too!
It appears summer has come early to Southwest Florida, and this is the pattern here until November thirtieth, so bear with me!

And next time please be here or be square, ya hear?!

Monday, April 29, 2013

All done with NO fun!





Whew! Happy that is over. Anticipation is usually high with such things. And in my judgment, at this point I am not quite clear if it has taken that is in the respect that it has entirely done what it is supposed to accomplish. My eye is still not the way I hoped for it to be, working correctly.

And my floaters are more often now, oh I suppose I forgot to mention that they were back before this infusion, yep they are!

This is all part of the diagnosis in keeping with the socket pain and blurriness indicating Optic Neuritis.



My last infusion was over around 3:45P.M., it had been started at 2:20 P.M. it took a bit longer and there was blood accumulated at the base of the needle which appeared to me as if it had bent, that is the needle and I was afraid it might have punctured the vein. I was squirmy in my sleep, but I did have a better respite last night and even napped for a while this afternoon. The sight appeared rather odd looking when the system was removed and so when it was cleansed with the alcohol swab I added in my own anti-biotic zinc medication on top, just to be cautious, having these things compromises your already compromised immune system ever so much more. And so most of these ways to aid in recovery from exacerbations from systemic ones to individual part ones like with your eyes and optic neuritis, are only done when all else has failed, actually the first go to for ON.

Just in: Peg, the nurse just called and said if the needle went through the vein I would feel pain, which I do not! WHEW! Nice touch, could have been wrong about her, wouldn’t be the first time… I don’t believe any of the others called back, but my memory isn’t always as good as it appears here, ha!

Another episode in the MS wars temporarily put on hold, I hope that it works anyway…low vision is also a part of this whole thing called Multiple Sclerosis and until my Momentum Magazine, from the National MS Society provides for us, came today. I did not know that was what I have been experiencing too. Many talk about it, but I did not understand it as well as I thought that I did. This article explains it much clearer than what was my thought on the topic. I suspect that I too have a bit of this low vision going on too. Hubby says during these last few days I have been a little more like a drunken sailor on my short jaunts with the walker from here to there, and my spillage has gone way up and knocking things I didn’t see over too…OH NO!

But in our world of MS, life goes on as with all life forms do, and as long as we breathe in and out we are here and know that there is a cure on the way, someday and soon, we all hope…!



On that note of a beginning for better days ahead, allow me to be the very first to wish all of you a very happy good night and ask you to kindly count all your blessings and share all your overages with you know who and we will too!



And next time please be here or be square, ya hear?!

Sunday, April 28, 2013

And the beat goes on...



Nice tune, but not mine…day two of IV steroid therapy.

Last night was not a joy, foolishly I forgot one of the many rules while on steroid IV therapy, i.e. 1000 MG. Solu Medrol for in my case a three day jaunt do not drink caffeine, in my case it comes in two forms, coffee or iced tea. My first lost weekend was not my fault, when I was on my experience in the April 2009 attached to a bed for three days with meals and catheter. I knew enough to order green tea when given the option on the meal choices assuming at that time that all green tea was caffeine free, but I was oh so very wrong! I had it with each meal served. PS mine at home is caffeine free.

And found myself sleepless in the hospital for the all of the days I was there, thank goodness for HDTV, which was my pal. Many bad things happened with that stay, agony during MRI’s that lasted for an hour and an half with NO breaks, even though I was screaming and she the operator kept saying that she wasn’t done and I should stop moving!

Believe me when I say I have had other MRI’s before and since and none were like that!

My catheter left me with the worst UTI ever when I got home I had a high fever of over 102 and I called the hospital and they wanted me to comeback to now put me on antibiotic IV’s, and I opted out!

I went to the doctor’s office where they did a urine analysis and blood work and determined that they could not believe all the bacterium in me and had to repeat the tests and systematically put me on a heavy duty course of Cipro.

And it was soon resolved in a week or more. I also, while in there found out about my diabetic reaction and was given insulin while in the hospital.

And so here I am in the midst of my fourth, third at home IV therapy with 1000 MG. Solu Medrol and the fun has begun as of the wee hours of the morning, night, not being able to sleep… around one forty-eight in the morning the funk had begun and so I tested my glucose and it had risen to 199, and so I checked my now handy dandy chart of what if any dose I needed, but I didn’t want to take it if I really didn’t have to and so I waited an hour to see if it would go down and at 2:48 it had only gone down to 193 and so since my chart said just a mere 2 units and that is what I did and tried to go to sleep, but no, I was till unable to until around four-ish I suspect and the next thing I noticed it was seven A.M. time to rise and shine!Note: this is the chart schedule from not June of 2011; this actually was my first at home one chart from 8-12-10!


By the time I did all my usual stuff and foolishly drank two cups of coffee just thinking I have to be awake now! Hubby was up and we had breakfast and decided we would try and go to the Home and Garden Show and it was the same as the previous and so no pictures were taken I guess even though I had my camera in the state I was in I just plain forgot, oh well. I took my glucose before we left at 11:06A.M., and it was at 177 and so 2 more units were shot into me.

After the Home and Garden Show Hubby took me to lunch at Fishville to cheer me up, I think, at the Village Fish Market where this time I ordered steamed little necks from the appetizer menu as well as a side of a mini house salad which was NOT mini at all, big enough where it had to be dumped on the plate it was perched on and that wasn’t big enough and so the server brought a larger one and Hubby cut it up for me, since I was a sight with my brace on my right and my neatly covered IV on my left. And my usual iced tea un-sweet with extra lemons… up oh tonight will probably prove to be another up all night adventure, did I mention, steroids and caffeine don’t do at all well together!

BAD, bad, bad!

Anyone going to be up tonight to chat?



And we came home and had chicken sandwiches for dinner with left over chicken, but just before and a couple of hours after my second dose of my infusion I checked my glucose again and this time at five P.M. it was 219 and so four units were administered according to the chart’s document.



You see, the steroids release slowly and it seems that tonight shall prove to be one that will be, how shall I say it, interesting or not so… since I have heard that many actual diabetics have much, much, higher glucose levels and survive, my highest was only over 300 back in 2011 the last time I was on this therapy and here I am to tell my tale again, so as the chart says, unless over the 400 and than I will call my MD, not to worry… since we all know that does absolutely no good. PS, my eye pain is still coming and going as well as my blurriness I am hoping that this time my results are just taking a bit longer not like last time when it didn’t help me at all…!



On that way too scary for me note, allow me anyway to be the first to wish all of you a very happy good night and ask you to kindly count all your blessings and share all your overages with you know who, and we will too!



And next time please be here or be square, ya hear?!

Saturday, April 27, 2013

Raw and uncut!


Be aware of what you are about to see it is not necessarily what you think you are about to see, or it very well might be, got that?
Below is my second or third dose of my 1000MG. of Solu Medrol IV infusion. Alongside of it is the one and only vial of old fashioned insulin for just in case, which has been used with my previous history, since the latter has three times before caused a diabetic reaction, and so that is that!


Below that is the installed IV by Nurse Peg from Matrix, nothing like her namesake my friend Mary’s and Joe’s and et all kids, eleven in all, Mom, who was also a nurse, and my second Mom who I did love, and my friend Mary is a nurse too…, this one though was  not a dog lover and so when Skipper licked her legs it made her not happy! My fault, should have mentioned we have a lover not a biter upfront, my bad, not really of course… Hubby took him out back to commune with his nature and then on a lead inside so that she could do her job, oh pooh! I prefer happy, dog loving nurses, don’t we all?


Again below is the cover-up for the public if I wish to leave our domain, and I hope that we will go with the Home Show still going on tomorrow too.

Right now I am rather pooped and spoke/wrote online in that FB group way too much today…with my BIG MOUTH and personal relatable experiences, as I have been known to do.
My eye has not healed yet, but I have two more days of infusions and I am hopeful, each infusion takes only about an hour.
So far, at this current writing my last glucose check was within the normal range and so we will check it tomorrow unless something happens that causes me to feel funky and need it checked earlier.
For a while there we had no idea for the distribution of insulin units, since this nurse had no information and last time my doctor installed it with the prescription info and so we called consult-a-nurse,who had no answers, except to go to emergency if I needed to and they could not prescribe and so we Google the diabetes.org, and they were closed for the weekend via their toll free number, and than Walmart where Hubby bought it and they too did not know, but suggested searching 'insulin dosing sliding scale', but there were too many variables…and my doctor is not available weekends  that is unless its an emergency, and I did not feel this was yet and I wanted to make sure it did not become one, and all I needed was the right dose info! At last I had a strange idea, Miss Mostly Clean Out Closet Lady, periodically, anyway. I said to Hubby let me look in that box up top if you would be kind enough to get it down and sure enough, on the very bottom of my Shared Solutions stuff was the print out, circa June  2011 with the correct dosing of the diabetes as per neuro instructions! WOW what a feeling!

So all is well in nearby to River City, as we are unincorporated, a pseudo town nearer the harbor…in many locations…on that note of a way high one, allow me to be the very first to wish all of you a very happy good night and ask you to kindly count all your blessings and share all your overages with you know who and we will too!

And next time please be here or be square, ya hear?!





Friday, April 26, 2013

It's not like talking about something makes it happen or anything...



Or is it? Nah, a FB, Facebook, friend has a site that we can let our hair down on and chat until the cows come home about our ills, mostly MS, Multiple Sclerosis.

And one gal was concerned since she would be going on IV steroids for a relapse, which is a usual method to get you out of it and fast!

Everyone was chiming in with their own personal experiences including me, been there done that… me at my finest, Miss Know-It-All!



Unbeknownst to the training conversers on that page and in that interim I was waiting on hearing back from my own neuro, since my lefty eye has been misbehaving and I even went to the eye doc last Friday for just that problem that had been causing me problems a few days prior to our visit then.

But as we have it he felt it was my dry eye and a slight case of conjunctivitis, but since I was having coming and going blurriness and socket pain and I was concerned about ON, Optic Neuritis, he asked me when I would be seeing my neurologist next, and I said next month, he said maybe I should move that appointment up. He said that he has no way to see my optic nerve, well duh doc. You see, it was a coming and a going… for the next few days until Wednesday when it appeared to be longer between those comings and goings and pain et al…

My neuro did call back this morning, I had been speaking to her nurse/tech and this is was odd because at first I thought that is who I thought called, but no it was her, herself my neurologist. She asked me again about my symptoms and she said it was better to err on the side of caution or some such thing and so she said she would call in the prescription plus add in the insulin.

Yep, my diabetic reaction and more weight gain just when I am trying so hard to lose it all!

The nurse will be coming here tomorrow with my delivery from the pharmacy of the IV 1000 MG. Solu Medrol shipped overnight and this time the better deal for the over the counter insulin was at Walmart! Injections via Walgreen’s as well as the Solu Medrol, nurse from the Matrix, and yes, that is their company name. My out of pocket expenses were again a better deal than that ridiculous insurance by a few hundred bucks! And I just paid them their $432 again, for next month, crazy?

As you can well imagine this is not that easy to do with one eye gone and the other playing hide and seek.



So now that you are up to speed and I wish that I weren’t, denial works for so many.

But if I were two for two, eyesight loss I wouldn’t be able to do this and that would make me oh so very, very sad… darn that Dragon of mine, with its autocorrect mentality!

At least than I would have an out.



Any-who, on that note of me, my, mine business of what you see is what you get, allow me to be the very first to wish all of you a very happy good night and ask you to kindly count all your blessings and share all your overages and we will too!



And next time please be here or be square, ya hear?!

Thursday, April 25, 2013

Gym, gym, gym, gym, gym... REHAB!



We go through life thinking that what if…?

Is it irrational thoughts to want that what if to be to physically improve you?

Even when you know that you have an illness that can’t be cured?

Perhaps, the only not logical thinking is thinking that you can go backwards in time to be what you used to be? We all know that is impossible? Or is it? One can only try to prolong their life with every tried and true methodology available that is legal and logical, hmm?

And so with a healthful diet, as always, and an exercise plan in the works, I am on a journey that I have been on before… and it did work, but not with all these obstacles in my way…all any of us can do is try. And since I received an award for Perseverance in Business way back in 1968 from the Berkeley School, perseverance is perseverance and it has worked for me in all aspects of my life before and so here I go, continuing…with my determination!



Any-who… today, I went back to the rehab in spite of my collapse on Tuesday; you know, you just have to do it, Nike!

Knowing that even  though I had a nasty morning this morning of hip pain going down the left leg like sciatica, which I have had many times before, but not recently.

Had to look up what to do for it since I forgot, used to be an issue with my discs pinching the sciatic nerve in the tushy but with the MS it is usually an issue with my nerves demyelination in the spinal cord in the same area though. But the care for it is the same, rest, and, alternating warm compresses with ice packs and a warm bath seemed to help by the time I wanted to leave. And probably the fact I had my daily Copaxone shot and two doses of about half my eighteen pills for the day done by then, couldn’t hurt and it didn’t any longer and so we went!

One of the slant boards was available, but here they both are, due to Hubby taking this shot after the woman was all done. This is on the side where the treatments are for PT and OT, specifically; in the area where the arm cycle is, is as well as all the other equipment that is for independent users and patients too.
Foolishly at first, I was going to wait for the arm cycle because someone was using it and it was how I had been doing it, the arm cycle first than the slant board. But I reversed my usual, doing the slant board first than the arm cycle and it all worked out just fine. Still at ten minutes on the arm cycle, and 25 reps and repeat with 25 more on the slant board. Hopefully soon I will be capable of moving up to more reps on both. Today was sixth visit.


This is the arm cycle with the seat slid off to its left, removed, to pull my wheelchair in.


Now the arm cycle being demonstrated how it works, while sitting in a wheelchair.
Sadly, that is me, but you all knew that.
Hubby blurred the photo, which is good, not my best side; the additional weighted look is due to me wearing my cooling vest.

On that note of some note of minutia… allow me to be the very first to wish all of you a very happy good night and ask you to kindly to count all your blessings and share all your overages with you know who and we will too!

And next time please be here or be square, ya hear?!





Wednesday, April 24, 2013

Clear-cut...



As I grow older, in life that alone is as ridiculous a statement as any, where else would I grow old, in death, I think not!
Any-who, I am learning daily that nothing is as simple or as clear-cut as one may think.
Tonight, for example, someone asked what people in our little secret group that discusses our chronic ills if any of us felt more like victors or victims. (Please now I am not telling tales out of school or naming names… Just generalities.)
Too simplistic and there is no right answer as of yet.
Most in that train of always thinking adults said as we all know that no one ever, with a chronic condition wants to feel or wants anyone to think that they are a victim, Geez that’s a given with just about everything. Although, I suppose some crave that negative attention.
But any illness that has no cure, as most referred to can’t be considered to be a victor of that disease either, until it is gone off the radar and is finally CURED!
It’s the same way with people’s takes on their own life’s issues, including how they approach their health regime or for that matter anything.
Many, won’t admit it outright, but subtly recommend to others that their way is the better choice in dealing with an ill or particular problem caused by an ill or a situation.
Sure, we all know they mean well.
And again, they are speaking from their particular vantage point and of what works for them or what their needs might be at that particular stage of their health or life experience in a similar situation or lack there of.
I have also found that many who chose certain methods to treat their chronic ailment or problem even if it is not working for them they appear to have the idea of no matter what, they are going to continue in that mode as if they have a life sentence decreed by a court of law and not by what their own health issue is telling them? In other words, if it’s not working… FIX IT, I say!
Baffling.
After last night’s kindness how-to, I feel that my hands are tied to intervene, but isn’t it like a child picking up a loaded gun and shouldn’t we all be our brothers and sisters’ keepers, when their life is at stake? I suppose with acquaintance adults we have no other choice than to be polite and say great. It’s their lives.
Gosh, when is it really none of our business?
Why my chat was with a very nice person who assumed that I needed to have what they had, but their circumstances are more severe than mine, and this is proven by their diagnosis!
We have different types of  MS and hers is much more in need of additional equipment, while yet, I do not need her suggested item so far… I am over supplied by some standards, many may think… Let’s take inventory; I have several canes, at one time they were my fashion statement, two walkers, one standard metal no frills issue and the other, fancy with a cushioned seat with a compartment to stow things below, an electric/battery scooter, and one wheelchair! All bought new and paid for out of pocket. Too much to think about at this time… and I should thin the supply, but not quite ready to donate, but hopefully soon.
I responded that for her that piece of equipment was appropriate, yep, not supposed to say that, but she started it with suggesting I should use what she had…
You see it is more than likely my own fault for relaying what happened to me yesterday at the rehab and yes, I went again, good for me!
Anyway, I did do ten minutes on the manual arm cycle, three more minutes than last time, hopefully I will be wearing sleeveless blouses before the summer is over…but then Hubby and I did the slant board all by ourselves, which was fine and the transfer went well.
My new way of attacking this manual machine, pushing with your legs in that slanted lying down position was determined that two sets of twenty-five with a few minutes rest in between to be a better idea. Did it! But getting off I collapsed and I told her this, but some how with Hubby’s help and my own strong will I did make it back into my wheelchair!
Oops, probably should have kept that one to myself.
I too have after all these years of dealing with people with ills, forty years of volunteering on and off, and taking classes to help myself and others as well as experiences of being in PT, OT, NMT fourteen times and I even was a volunteer for a few months in the same rehab where I am going now, during a wellness period, not counting when I taught Aquatics in their indoor pool for a couple of years… and being in management for thirty-two years and training people etc. I do have a tendency to tell people instead of listening to them.
No excuse, but it is what it is…
So to tame that in me it needs time.
But what do you do when others assume they know what YOU need.
I know excuse yourself or change the subject, gotcha! (Wink)
On that note of being allowed to be whom you really are has nothing to do with a standard that others may feel is the only way… wiggle room for all ideas is what we should understand that we all know what is right and true if we have any brains in our head and should realize that personal experience is one of the best teachers and we all should be respected for sharing that… and also to understand that others who don’t want to change and feel that you are the stubborn one than we have stalemates, sadly, so leave it alone.
In closing all ways should be examined, in my opinion, and no one way always works in reality.

We all need to know that it is okay to think how we think because we are who we are… and that is a very good thing! Another good thing is allowing me to be the very first to wish all of you a very happy good night and ask you to kindly to count your blessings, and share those overages with you know who and we will too!

And next time please be here or be square, ya hear?!

Speaking My Mind: Interesting familiar diagnosis for one and horrifi...

Speaking My Mind: Interesting familiar diagnosis for one and horrifi... :   But these are MINE! Not Hubby's! What he has is not contagio...