May 31st

Can you believe that tomorrow will be June! Just doesn't seem possible that time goes by so quickly, any more.

Mel starts summer school, in the morning, and has quite the summer route. He also has a number of trouble makers—so it should be interesting.  There are lots of kids attending summer school, and Mel has the biggest bus in the fleet to haul the darlings. He might get a monitor aboard to help with discipline. They'll make that determination at a later time. Personally, I'm rooting for the monitor. You can only imagine what driving these winding, shoulder-less roads with 60 kids, in the heat, can be like.  And, his route takes about 75 minutes! Aarrgghh-- but he still loves it!

More soon. Hugs!

Will find list

I need to regroup in here. I've been so preoccupied at the farm. I need to check out some of the things on my "blog" list, and compose some stories.

Anyway—more later. Hugs.

good/ bad

The good news is that we had a good trip to KC, a nice dinner out, a great room, and got all of our shopping done. The bad news is that I did not get a treatment!

We were waiting at the clinic at 5:50 am, when Mel turned on his phone. A voice mail from daughter announced that we needed to contact the doctor, yesterday. (too late*sigh*)  At about the same time, the nurse who administers treatment showed up, and said that my last lab was not in range to be able to give me a treatment. We discussed options, and I'll be referred to a cytologist for evaluation. I'm not terribly concerned—I think that the messed up meds I took while off of my estrogen was the cause, and I should be back to "normal" soon.

Yes, Judy, the methotrexate is a chemo drug, but not given in chemo doses. Some have problems with it, but I never have had any trouble at all.

I'll keep you apprised as things develop. Hugs!

Treatment on again!

My treatment is back on! I'm currently in the process of repeating the lab test that got fouled up. It is a pain—but I'm grateful that it is underway. 

My new treatment day will be Wednesday. I made a new motel reservation for Tuesday night, and everything is falling back into place. I was really starting to have problems with flailing arms, and beginning to get worried. Mel was noticing my problems, too, and we're both relieved that things are rolling, again. It still amazes me that my body tells me so loudly that it needs more of that wonderful Methotrexate.

Lo—I'm sure today's picture will catch your attention! I'm sure having a blast! 

Hugs!

2nd post

Treatment was canceled. There was a lab screw-up, so I'll have to re-schedule. The good news--I'll get more farming done! lol  More hugs!

busy

Tomorrow is the last day of school. There will be early dismiss, and we will be leaving for KC, a treatment, and Mel will do our Costco shopping while I'm "hooked up". Today, I'm preparing for the treatment with the required 2 day ph regulating bicarb regimen, paying bills, (it's pay day) and preparing to leave my "farm" for a day. I'm sure having fun with Facebook's "Farm Town" game. I'm finally getting it all figured out, and making progress toward my goals, there. I've visited lots of others' farms, and have some awesome ideas. 

So, it's "off to work we go"! More soon. Hugs!

Broken arm

I had my first "treatment" in the summer of 1998. Lucky me—I fell and broke my right arm (just above the wrist) within a couple of weeks of the treatment. And, I'm serious about it having been lucky. I didn't think it was a good thing at the time, but retrospect shows me that it was vital to my getting so much use of my left hand back so quickly. I was forced into using that atrophied left hand, almost exclusively, for weeks! So, I regained strength and control in it at break-neck speed. I'd never have been able to do the things which I was doing with my left hand without the treatment, and I'd never have attempted all that I did if I hadn't broken my right arm. He works in strange ways, huh?

The abilities in that left hand/arm never got "perfect", but I'm able to do just about everything with it, now. Testings at the clinic where I receive the treatments show vast improvement right away when I began the IV Methotrexate, with a leveling off which has remained pretty constant for 10 years. My fine motor skills lag behind my right hand, but few people ever notice—even those watching for it. I drive "5 on the floor", (left foot working clutch, left hand controlling wheel while shifting) and have for years—a feat unimaginable to me in the late '90s.

I was able to go a full year after treatment before the left hand started to deteriorate a bit, again. My neuro had changed the treatment protocol, so we decided that I'd do best with half-dose treatments each 6 months. I've pretty much stuck with that regimen ever since. One time I went 8 months after a treatment—my right hand curled up and I could not open it for a few weeks. I won't attempt stretching the time between treatments, again!

Today's picture I stole from a jigsaw puzzle page. I just had to get in on the iris sharing.  Hugs! 

1997

1997 was a year of research and exploration into this crazy MS disease, and trying to figure why there was such a radical difference in my symptoms between Wichita and Cedarcreek. Those symptoms most affected were endurance and fatigue. I could stay awake most of the day, and actually make a few trips up/down the stairs to do laundry rather than spending 2 or 3 days to do one load. Physically, there was little change. My left side was much worse than my right, and I had little coordination with my left hand/arm. I could not scrub my head (shampooing) with both hands—had to use my right hand exclusively. Mel had to cut my food, and I needed assistance with any 2 handed job—though I got very inventive in ways to achieve what needed to get done. I'd read (in 1994) that oral Methotrexate helped with upper extremity abilities, and had started it in 1995. A note in my 1996 journal thanked Methotrexate for delaying early right hand spasms—giving me a several month reprieve.  

Meanwhile, I was in chatrooms, meeting lots of people with MS and learning new ideas, & treatments. I was feeling particularly low one day, and was violently taken away from a self-pity party by a lady (since passed) who invited me to her web site. It turned out that she was a quadriplegic using total voice control, and striving to receive a drug available only in Greece at that time. The drug was Mitoxantrone. It is now approved in the US for MS and known as Novantrone. She recommended to me that I call a Kansas City physician who had opened a trial for high dose IV Methotrexate. She even gave me the telephone number.

I called, and asked if I could be considered for the trial. They told me that I sounded like a candidate, and they sent a lengthy questionnaire, which I completed and mailed back. The next I heard was that they were very interested in me, and they set up an appointment for an examination. The exam went well, and I was accepted into the trial.

More to follow!  Hugs.

PS The picture is of a Puffin—another of my favorite birds.

1996

1996 was a pretty tough, and scary year. MS wise, my decline fluctuated between bad and worse. In looking back on my diary, "worse" was while I was at home. I had already noted that I did better when away, but I never rationalized away from "what". Hindsight being 20/20, the obvious factor was the house. As my abilities declined, I was forced to spend more and more time at home—the more time I spent at home the faster my decline—a vicious cycle. At the then rate of decline, I figured I'd be a quadriplegic within 2 years.

In the fall of '96  (Oct. 18th) my 2 sisters met me, we borrowed Danny's van, loaded up my w/c, and the 3 of us went to a timeshare in Missouri for a vacation together. We never unloaded the w/c! I did pretty darn well without it! After a week, we returned to Wichita, and as witnessed by several—there was an instant and visible decline the moment I stepped in the door of that house!! We vowed to get me out of there ASAP! 

We were moved by late January '97 (under 3 months—to view, buy, & close on a house)!  The positive factors in our new home were as dramatic as the negative factors in the former house had been. We never found out what the negative factor was, but my suspicion is either mold or radon. (or both).

More to come. Hugs!

close/open chapters

1995 brought continued decline in my MS, (I'd applied for SSDI, and was approved) and in our work income because we had to pay others to do the work I had always done. It hardly paid to keep the restaurant doors open, but we continued to struggle, primarily because of our employees (including our kids) many of whom had been with us since 1978. Sister and hubby arrived on this scene on the white stallion (actually, in their RV), and assessed the situation, recommending liquidation, giving the employees a nice severance check, (cutting the kids' apron strings) and take a well deserved vacation before beginning anew. They offered to help with the closing, and take us back to AK with them in the RV.  We accepted this generous offer, and closed the "restaurant" chapter of our lives.

The 4 of us had a fantastic trip to Alaska, pausing in Yellowstone where we met other sis & hubby in their RV. The 2 sisters & hubbies had reserved a room at the Yellowstone lodge for Mel and Me for an early 20th anniversary. It was a pleasant and completely unexpected surprise. After arriving in Alaska, (on the longest day of the year—20 hours of daylight in AK) we fished,  (deep sea, fly-in, salmon) and had the full tourist treatment, as well as indescribable fun and adventure—a "to-die-for" vacation. 

I'd done well in Alaska, but when we returned to Wichita, my progression renewed. Mel avoided going back to work in restaurants, and took a promising position with O'Reilly's in management training. But after he'd mastered all of the training, they backed out on the position, and salary they'd promised. Their loss!  

More to come!  Hugs.