Unpleasant reminder

Been home sick with a bad cold for the last few days.  As anyone with MS can attest, common illnesses like a cold are that much worse because they worsen existing MS symptoms, and this is no exception.  I'm having increased numbness, weakness, and incoordination in my arms and hands.  Typing, especially with my left hand, is difficult.  Forearm, wrist, and finger strength is significantly degraded.  Leg strength is also degraded, but I think that's just illness.  Some of this today may be worse because I didn't get much sleep last night.  Hopefully it'll all clear up in the next few days.  My next Tysabri infusion in on Monday.  It'll be interesting to see how they respond to these symptoms, as this would represent the first significant increase in symptoms since starting Tysabri, over three years ago.

I suppose while I'm here, I should also update other topics.

Eczema is much improved, once I started using memetasone.  Used it consistently for the first week or so, then as itching increases since, which amounts to maybe once or twice a week, and even that with decreasing frequency.  So, much happiness there!

On the house front, since I've moved in with Kym, I rented out my house.  My first tenants moved in in October, having moved into the area from upstate New York, and have already turned in their notice.  I've been using a management company for the whole thing, which makes it all really, really easy.  They've already found a firm prospect to move in when the first tenants move out.  I had a lot of anxiety about renting the house out, but now I'm very happy with it.

Kym and I have been preparing for our wedding in September.  This last weekend, we attended a "wedding salon" (show) in Atlantic Beach, NC.  Got some good ideas, met several prospective vendors, and interviewed two potential officiants.  I gotta say, if most of the smaller wedding show are like this one, they're great romantic get-aways even if you're not in the market for a wedding.  For the price of tickets (less than $40 each), we got a discount room rate at the (beach-side) hotel, free full, hot breakfast both days, a cocktail reception the first evening (with alcohol), a full wedding reception (alcohol, full dinner, cake, DJ and dancing) the second evening, and had an opportunity to tour local wedding venues (which also included alcohol and food).  We're considering going to additional smaller shows with the hope they offer the same amenities!


This Memorial Day weekend has been a milestone--a HUGE milestone--with my MS.

My Heart, Kym, has been harassing me about my house, which is vacant since I effectively moved in with her six months ago, and actually moved in with her last weekend with the help of Richard, SteveDave, Ted, Gene, and Mitch.  Kym (rightly) wants the house on the market and sold so we can move on.  It'd be a huge plus for our finances to get rid of that anchor.

So Saturday we spend a good four or five hours straight cleaning up and packing the few remaining small things.  The latter half of the day, we went out looking at furniture.  My master bedroom set went into Katie's room, and Kym felt since I provide a bedroom set, she should provide one, too, so she wants to buy a new set.  So we hit Rooms to Go, The Room Store, Haverty's, and Klaussner, and found something at Klaussner.

Sunday, we returned to my house and continued the cleaning (she's a stickler for detail).  We both worked continuously for another three of four hours.  Though not done, we wrapped up and headed home, where she decided she wanted to work on the yard there.  I was wasted and really wanted to take a nap, but just ended up relaxing for 30 or 45 minutes 'fore heading out to help her.  We were given a mound of mulch by our neighbors (who had purchased too much), and she wanted to use it on the bank by the lake.  I shoveled and she spread.

Today, again we returned to my house and (mostly) finished (it's amazing how many details materialize while you're working through the process), so that was another 90 or 120 minutes of activity.  After that, we went  back to her place, dropped off the stuff we collected, and went to Klaussner to make our purchase.  Then, with all of our chores out of the way, I got some downtime at the office, programming.

The amazing thing about this weekend is that it was full of diverse physical activity in long. continuous stretches of time.  Although I fatigued, at no time did my MS rear its head!  The fatigue I felt was solely--SOLELY--muscle fatigue.  Yes, I'm out of shape because of my MS, but the fatigue I felt wasn't MS weakness, it was just a lack of muscle tone.  Even with the fatigue, I mostly kept up with Kym, kept active nearly the entire time, did substantial work...  It was AWESOME.

And I really didn't even think about my MS until Sunday evening, sitting in a chair out on the patio, while resting and reflecting on the two days.  MS wasn't an issue!  MS WASN'T AN ISSUE!

I really feel like I'm living my life despite MS.  MS doesn't dominate my life anymore, and I'm so glad I get to enjoy all that my life has to offer as a result.  I'm so glad I get to share it with someone like Kym, who is so accepting of all this, and who pushes me just enough to draw me out and push my limits, without overdoing it.

Life is good right now.  Thank you..

Monthly status report

It's been several months since my last status report.  Happily, because things have been well!  No new symptoms, only continued improvement.  MS is not a primary day-to-day concern and is, in fact, well down the list.

Improvement hasn't been big jumps, but a slow, steady march.  I think the biggest factor preventing big improvements in my endurance, stamina, agility, and strength is how little time I spend exercising.  In other words, I'm limiting my own improvement more than the MS is.

I'm not exercising as much as I want: about two or three visits to the gym a week.  Kym and I have taken several walks over the weekends, though, which is nice.

In other news, the skin condition persists, but isn't as noticeable.  I still use the steroid topical every couple of days, but frequency is way down.  Done with 21 days of erythromycin, and saw a reduction/elimination in the tiny, itchy bumps on my arms.  Still have itchy lesions on my lower legs which look nothing like the tiny bumps the e-mycin helped.

Warts appear to be gone.  Have an appointment with Dr. Stylski next week and I expect him to declare them gone.  Feet still have some healing to do, but they're probably better than they've been since at least college.

Allergies have been noticeable for the last two weeks.  Started Alavert last week.

I'm trying to increase the time between my infusions, hoping to find a longest effective period, to minimize the amount of medicine I take and the burden on insurance.

What do I want?

Kym posed the question to me:  What do you want, really want?  What are you working toward?  This was my response.

Every once in awhile I think about this.  I've found that I'm not one for big dreams, and I too am pretty happy with my life as it is.  I have a stable home, a steady income, reliable transportation, a job I enjoy, hobbies I can readily pursue, friends and family I can count on, and I'm healthy enough to be independent.  I have a steady girlfriend that I care about, with whom I'm comfortable and physically compatible, and I'm not secretly debating whether I should be looking for someone else.
So what do I want?
My health.  There really is nothing else that even comes close to this.  I want to not wonder when my next flare-up is going to happen.  I want to not be so frickin' stiff when I stand after sitting for any significant period of time.  I want to not worry about the cost of my medication, and what would happen if I lost my health insurance.  I want to not wonder if today's minor odd feeling is allergies, lack of sleep, a side-effect of my medication, normal MS ebb-and-flow, the start of a flare-up, or PML finally come to take me.
Beyond that, I'd love to go to the gym more and be in better shape.  I've never been thin, or even "average" sized, and I'd love to get to that point.  Just over five years ago, I was layed-off from Nortel, and spent eight months out of work.  In that time, I went to the gym twice a day, four to five days a week.  I felt great and was in the best shape of my life!  And I could jog for a hour straight!  I'd love to get back to that, but I don't have nearly the time it takes to do that.
I'd like to live in a house that isn't a bachelor's pad.  I like neat and tidy just as much as the next person, but I hate the effort of keeping it all up, because it keeps me from things I'd rather be doing.  I've considered hiring a maid service, but have trouble justifying the cost to myself.  I also can't justify to myself the cost of hiring a handyman to finish my DIY projects, even as little interest as I have completing them myself.
I'd like to hike regularly, and perhaps camp.  I loved hiking as a kid, and frequently enjoyed camping.  Fishing--in the right weather--is very pleasant.  I'd like to go on another canoe trip, and even just tool around in a rowboat more often.
I'd like to see Australia, Hawaii, and the Grand Canyon.  I'd like to try diving, ideally in some tropical setting with lots of marine life.  My physical limitations discourage these, though.
I want to never be a burden on anyone.  I want medicine to keep my MS at bay so that I can die of mainstream causes related to old age, or of causes related to factors I have control of (e.g. my diet and exercise), so at least I can say I did it to myself, instead of leaving it to random chance.
I want to enrich the lives I touch.  I don't need or even want to touch a lot of lives, but when I do, I want it to be in a way they appreciate and look back on fondly after we part.  Unless it was someone who pissed me off to begin with, in which case I want them to think back, "damn, wish I hadn't pissed him off!"  :)
So what am I working toward?
I'm doing the best with the health I got.  I am exercising (at least some) and I'm not gaining weight.  I'm on the most effective medication available for MS, and I stay abreast of developments in MS treatments.  I'm aggressively attacking any other medical issues that arise.  I'm exposing myself to activities I probably wouldn't otherwise have been exposed to, challenging me physically, and thus pushing me to adapt and better myself.
I'm aggressively ensuring the stability of my domestic life by paying down my mortgage, minimizing my debt, and saving.  I'm aggressively trying to catch up for lost time with my retirement savings.
I'm ensuring my earning potential by remaining engaged in my work, by pursuing excellence, by remaining current with my skills, and by exercising leadership.


Haven't gotten to the gym much this week: went Monday and again today.  Today, walked/ran for just over 15 minutes (only 1 mile, ugh!).  Didn't have umph to do any more.  Haven't gotten enough sleep for the past week 'cause of the new relationship...  :-D  Also, hadn't eaten much 'fore the gym today, so just didn't have much energy.  And, had been outside for some time this afternoon in the heat of the day at the flea market, which sapped whatever energy I did have.

After the flea market this afternoon, I was struck by how worn out I was.  (Normally--believe it or not--heat doesn't adversely affect my MS symptoms.  Exercise will, but I've never really felt heat hurt.)  Today, what stood out was my core muscles.  We'd walked around the market.  As usual for a casual stroll, the pace was slow, which I actually find more fatiguing that a faster one.  But it wasn't my legs that were tired.  My back and my abs were tired.  I think this is again shows that the secondary effects of MS can take a toll, and suggest that many MS people (if my experience may be taken as "typical") may have lingering problems that can be readily resolved with exercise.  I've worked on my legs, and have seen significant improvement.  Now a days, most of the problems I have with my legs at the gym ('cept for today) are due to muscle and cardio fatigue, both of which can be addressed by more (regular) exercise.  The core fatigue I felt today felt like *core fatigue*.  It didn't feel like MS fatigue, it felt like my muscles were fatigued--not weak, not tired, but just exercised beyond their level of fitness.  That's a joyous thing, because it's something I can do something about!  I wish MS doctors would emphasize exercise more, and explain this phenomenon.  I suspect too many MSers attribute all fatigue to MS, when in fact some/much/most of it may be due to a lack of conditioning resulting from inactivity resulting from a flare-up.  Yes, overcoming that deconditioning is difficult and takes effort, but it's positive action you can take for yourself, by yourself.  And no matter how effective the drugs are you take, they alone won't overcome any physical deconditioning you've experienced.  I've found exercise tremendously effective.  I won't say it's more important than my Tysabri, but it's a close second: it's allowed me to really maximize the benefit of the Tysabri.

In other news, the itching persists.  I briefly had a theory that the sausage in the Sonic breakfast burrito I so frequently enjoy may have poultry in it--to which I'm allergic!  But I didn't have one today and the itching was as prevalent as ever.  Still, I'm going to forgo the SEC burrito for awhile and see what happens.  I've also thrown out the Target brand scented dryer sheets, just in case.  That'll take a week or two have an impact.

Saw Dr Stylski the other day about the warts.  He admonished me for not using anything on them (I'd stopped the formalyn thinking it may be causing the itching, which it clearly isn't).  He also gave me a prescription for an acid paste to use on the common wart.  I need to go to a special pharmacy to have it specially formulated for me.  Yikes!

Noticing spasticity a little more, but I've also been trying to use up the remainder of the Hyzaar I have, so I've been cycling them in here and there.  I strongly suspect the Hyzaar is responsible for the bulk of my spasticity, since the spasticity fell off dramatically after I switched to the Cozaar.  I also continue to see ED problems, which may be somewhat attributable to the Hyzaar.  I hate the idea of wasting the unused pills, though...  Restless legs have been the thing this weekend.

No work on the house recently, and likely won't be any for the next two weeks.  Then, with K otherwise occupied for three weekends in a row, I should have some time to progress on the bathroom.  K has all the makings of something long-term, so getting the bathroom fixed is pretty much a requirement.

Car's paid off and the title's in my name now!  Two months, bay-bee!

Recent movies: Iron Man (very good, lot's of fun); Hulk (good, liked the homage to the TV show); Made of Honor (cute); Fool's Gold (cute, but very slow); Hancock (good, not entirely what I was expecting, kinda disappointing climax).

Fireworks in Garner on the 3rd w/K & friends: very good.

Long weekend with K: priceless!

Jury duty tomorrow.  I get promoted to foreman!

Monthly MS update

Per usual, I write this during my monthly Tysabri infusion.  Today is #14.

Tomorrow, June 28, is the seven year anniversary of my diagnosis, by Dr Carnes.  It's been a wild ride, to be sure, but seven years on, I'm stable or even improving, I'm active and enjoying life, and optimistic that things will continue to improve.

This past month has been a good one.  The big news is my dating life has really blossomed.  ED continues to be evident, but things are at least functional enough for occasional intercourse.

I continue to go to the gym.  Not a whole lot of improvement, but not a whole lot of loss, either.  I haven't been going as much as I'd like, but there seems to be so much else taking me away from it.  Last week, walked around Lake Lynn, which is 2.4 miles around.  That's the farthest I've walked in several *YEARS*.  Was fatigued and stumbling by the end, but very happy!  I've been able routinely run for five minutes continuously the few times I've tried in the last two weeks.  Last month, I'd intended to do more weight work, but haven't done it.  I really need to.  Day-to-day routine walking isn't a problem at all.  Have done some more work on the house.  Am happy by the amount of physical labor I can do without significant loss.  Improvement is obvious.

SPASTICITY IS NO LONGER A PROBLEM!  Not sure what caused this switch to flip.  I recently changed my hypertension medication from Hyzaar to Cozaar.  Hyzaar contains a diuretic that Cozaar doesn't.  Could that have affected the spasticity?  GP took me off the diuretic on the thought it might be contributing to my ED.

Continue to deal with itchiness and leaking wounds.  GP thinks it's an allergic reaction (to the wart medication I'd been using), his PA thought it was impetigo.  Took 10 days of antibiotics for the possible impetigo, then nine days of oral steroids for the possible allergic reaction.  The stuff cleared up just as I started the steroids, but now that I'm off 'em, it's coming back.  If it is an allergic reaction, I think it likely the Target-brand fabric softener sheets I recently started using.  If not that, I'm back to thinking it's impetigo.  Ironically, there's a woman in here today that had an allergic reaction to Tysabri three weeks after her infusion with lots of itching.  After talking to her, though, I don't think she and I are experiencing the same thing.

That's it!  All is good!


Lost a fish today.  Went out to clean the filter again and found one of the larger ones, white with a black spot on its forehead, about two feet outside the pond.  Ants had already begun what they do.  This one was a prominent member of the population.  I'll miss it.  This leaves eleven, if my count is accurate. 
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Past weekend, etc.

No gym on Friday; D&D instead.
Gym Saturday:
treadmill: 5m@5mph
treadmill: 20m@3mph
step-climber: 15m@3-4
elliptical: 30m@8-9

Gym Sunday:
elliptical: 15m@8
weights: legs (some abs)

Up talking to C on the phone 'til nearly midnight (2:45 on the phone!) Sunday.  Didn't sleep well at all afterward, mix of excitement and just being too warm as the temperature and humidity go up.

Had jury duty on Monday.  by the time I got there, the mix of too little sleep and something I'd ingested that didn't sit well left me feeling bad, so I got excused for the day.  On the drive home, rescheduled my appointment with Shelby from Tuesday to Monday, so I killed an hour and a half at home (fighting to keep myself awake), 'fore heading back out for that.  Shelby and I agreed that I have impetigo, probably a complication of my wart treatment.  She's put me on antibiotics for the next 10 days to wipe it out.  I'm to continue with the anti-fungals I'm using, too, which includes some left-over Nizoral shampoo I had and some gel Dr Stylski gave me for my feet.  Also using a cortisone cream to alleviate some of the itching caused by the impetigo.

Spent another 1:45 on the phone with C again last night.  We're gonna try to (finally) meet tonight.  I've already mentioned the skin problem, which sucks to high hell.  I'm so sure this is going to ruin the momentum, especially given that the physical side is such a big draw to both of us.  I can't have physical contact, to avoid spreading it.  Blech.  I really hope this goes well.

Legs are sore today.  Hooray!

Monthly MS update

Another month has passed, and here I again find myself at the IV clinic for my monthly Tysabri, my thirteenth infusion.

There is actually very little to report.  MS is stable; in fact, I'm still seeing improvement.  I've had several notable work-outs in the past month, notable for both their durations and intensities.  I actually jogged for about five minutes just a few days ago,, and then continued walking for another 25 minutes, and was still steady and strong enough, even after that, to hop on the step-climber for 30 minutes!  I haven't jogged that long in probably a year and a half.  The walk after it was also one of the best, strongest, longest (steady) walks I've had in quite a while!  I'm *very* happy with my progress.

I've begun looking for a girlfriend.  It's been a couple of months, and I'm ready and eager to get back into it.  I've actually been corresponding with someone for the past week, and we seem to be getting along very, very well.  I'm excited about this!

Spring weather as prodded my pond to life, so I've had tend to it a lot more than normal.

Sleeping has been much better lately with the warmer weather.  Apparently, warmer air means I sweat *less* at night.  How odd is that?

A run-down of current symptoms:

* Mild degraded sensation/numbness in both hands (fingers -> fingertips) and both feet (soles).

* Strength and coordination from waist, down degrades with exercise.  This no longer happens as early as it used to.

* Exercise also causes my head to fog.  Also doesn't happen as early as it used to.

* Walking is much, much improved.  Can go much longer distances.

* I still get sleepy frequently, but not as profoundly as I used to.


I'm a happy boy.