Christmas was fun (and the Wii is addicting)

Had a great time at home with family. We got a Wii (for all of us) and it is so much fun! I'm tired as all get out though (and sore). I tried to rest and did get some naps in. I really did not feel particularly well until Sunday. The shot side effects along with my nuts work hours last week really took their toll.

If the snow will burn off a bit we may go to Branson tomorrow. Onward to my family on Thursday night and over the weekend for Christmas with them in Kansas. We'll see how the weather turns out. We did not mind being cooped up at our house much with the Wii to keep us all entertained. It is nice to have active games that 4 can play at the same time.

Work overnight pushed my shot to this morning

Yesterday (that has bled into today) was hard (and hopefully will ease up). My Grandmother's funeral was yesterday morning in Bartlesville and once I got back from that I had to leave for a client in Norman as their system got messed up by Microsoft (go figure. You call for help and they make it worse! bah.) Back from Norman at 10:45pm or so and follow up on another project. That decided to go off a cliff and back out to another client by 2:15am. There till 6:45am and then home for a cat nap, shower and back to it this morning. What a ride.

Julie gave me my shot at 8am but I think I'll be ok since I can manage my Ibuprofen through the day. Will see but I didn't want to have my shot downtime to go into Christmas...

Monday and I'm feeling better

Friday was still miserable and Saturday a minor improvement. I think I actually caught a cold or something that kept me down. I took a bunch of loratadine and Tums and such. Not too much to say other than I finally feel a little closer to normal.

Went shopping on Saturday with Mom, went to a Christmas party (family) Saturday evening and went to Grammy's (Julie's grandmother) birthday party yesterday. Lots of activity and travel but I survived. :)

End of day, little or no improvement

This is nuts. I've taken (in my opinion) plenty of Ibuprofen through the day. I am just not feeling any better. Insane fatigue. It is hard to pick up my arms. They just want to lie on the desk and not move. They feel like lead.

Julie is going out tonight to crop and I will watch a movie and eat pizza with the boys. About as much energy as I can put out...eat pizza on the couch. :)

Late shot=no fun the next day

Had some late work Wed. night at a client that should have been 30 minutes but turned into 90. That ended up pushing back my shot till after 7 (because I still met Marsha to work out at 6). Then the alarms overnight for Ibuprofen did not go off and I am severly under-medicated this morning. I just feel terrible. The 1am and 5am doses didn't happen (just at 3) and being later than usual, I'm just that much farther behind the curve. At any rate, I'm not much good to anyone right now. I'll see how the day progresses.

Weekend was fun

Spent Thursday night and Friday with Colin and Courtney. They took me to a real German restaurant and we had einige Schnitzel und Bier. It was great. Colin and I stayed up and talked and spent all of Friday together. It was good to catch up. We need to do that more often in my opinion.

Saturday as pretty non-eventful. We did get some new lights for the house. Julie put them up on Sunday while I was working.

Yesterday was a packed day with church, Julie taking the boys to the Zoo with the Cub Scouts and me going to work. A client moved from a colo facility to their new offices last night (the network anyway). We finally got things working around 8:30pm (I think) but Cox didn't have their side done until this morning. It mostly came up as expected but the phone system is still wonky.

Found another person yesterday that has had some experience with an MS diagnosis. Luckily that isn't what is was and they are being treated for what they found, but in our discussion we found that the testing experiences and uncertainty of 'what it all means' were certainly similar. Our attitudes of managing what you have with what you can are certainly in common there. I'm glad they felt comfortable talking with me about it so candidly.

At any rate, here we are at another Monday where the world can decide if it is on fire or at a simmer. I hope that it is a calm one.

The weekend is over

I had a massive upgrade that Russell and I did over the weekend in Norman. Two server consolidated to one and that on new hardware. Lots of changes, little sleep. Less for Russell than me, the pager woke him up in the middle of the night on yet another project.

Glad to be home the last few nights and I've slowly started to catch up on sleep. A little less exhausted today feels good. Still lots to do before Christmas as everyone is itching to get things done.

My symptoms are more obvious to me than they have been in some time. My balance is terrible and I'm constantly catching myself it seems. The walls are again my friends to know where I am. I'm really thinking about another round of Solumedrol just because I now see how much better I felt. The return to the pit has revealed just what I had been dealing with. The little things are more frustrating to me now that they have crept in over weeks instead of years. At any rate my spirits are good, I'm not in any pity-party or anything and joking about it is still the best medicine.

Driving at night is getting much harder. The contrast in the oncoming lights and such is very distracting (I guess that is the way to describe it). It is hard to 'survey' the road as a whole like I can in the daylight. I'll be cutting back on that as much as I can.

I'm going to go see Colin over Thursday night and Friday so I get some night driving then, but it'll be worth it to just hang out. I haven't been able to see him for a year or more. It's crazy.

Thanksgiving was fun, now back to the grind

All things went well overall last week. Had a ton of work to get done before and after the holiday. The shot was not too bad again, especially now that Julie is doing the sticking.

Silver Dollar City was fun. Did more looking / shopping than we normally do and the day was perfect weather-wise. We got to see the tree lighting show which is great.

Work has been full this morning with all of the holiday issues that I now get to work on.

Slept better last night

Glad for that. I actually don't remember waking up at all through the night. I haven't caught up on my sleep obviously since it was only one night but we do have a long weekend coming up. :)

I think we are going to Silver Dollar City this weekend. After much discussion we came up with a plan that should work. This is my favorite time to go. As it gets colder the hot chocolate gets better.

Monday the 23rd

Slept terrible the last two nights. Let alone the pager going off at 3:45 for a system down, I have done the transition wake-up thing about 10 times a night the last two nights. I need some 'log' sleep. Starting to feel like a zombie.

My MRI results were good. The spot they saw last time at C6 is still there but not materially larger than last time so no 'significant' change, much like the one in my brain.

Compressed week this week with Thanksgiving. It will be interesting to see how it goes.

Last couple of days

Well the MRI was uneventful as expected. About 50 minutes in the tube. C-spine MRI looking for any progression of my spot around C6. My neuro is closed tomorrow so I hope the nurse calls back with my results from the Radiologist.

Shot 15 was last night. These last few times of Julie sticking me has been much better and faster. last night it hurt on the first try and we redid it. The second time didn't hurt at all. That happened to me around shot 8 I think where I must've hit a nerve or something. Overnight was fairly miserable. I guess I didn't take quite enough ibuprofen and had a fever and was up a number of times overnight. I'm still very sluggish this morning.

I'll write again as I get info about the MRI.

Well I'm worthless

It has been way too long since my last post. I have to get back in the saddle. I have had two more shots since I wrote last. Julie gave me the last two 'shots' because the actual sticking myself was just getting too hard. I can do the plunger / take it out / band-aid part, it is just the stick (even though it doesn't hurt) that slowed me down.

My shot symptoms are just not an issue any more. I am still very careful and particular about my ibuprofen dosing. I'm afraid of feeling terrible if I vary it now that I have one that works. At some point I'll need to experiment again so I don't over-medicate in the long run.

I have an MRI of my neck tomorrow morning. They want to see if the lesion at C6 has changed. Woohoo the tube again!

The solumedrol continues to wear off. I say that because my symptoms increase and it is kind of funny; I thought I was back to where I started but things continue to get harder, especially my fatigue. I guess at some point I'll stop thinking I'm sliding down and plateau again.

Marsha has taken advantage of my elevated ability and has ramped up my workouts. She is trying to hold me up there and not let my difficulty slide too much. The Bosu may be a short-lived idea; I'm certainly not holding my breath. I did do a few push-ups on it (one hand on and one off, I don't know what that is called) this lat Wednesday. Anything on that feels like a huge accomplishment to me.

Shot #12 has come and gone

I don't feel too bad this morning. 800mg at 4 and 9, 300 at 1 and 5. No fever, no real aches.

The solumedrol is definitely wearing off and I'm noticing changes in my balance again. It is very interesting to feel my symptoms come back slowly. Nothing too terrible but I'm getting 'tossed' into walls and door frames again and when I'm working out, the balance line, step-ups, stuff like that is getting much harder, quickly. My fatigue is starting to come back, but mostly exacerbated by exercise, I feel like I'm fading more quickly.

I have an appt. with Dr. W (neuro) next week. I guess we'll see what he has to say, although I'm not holding my breath for anything profound.

The shots, while I'm 'getting used' to them, the are getting harder to inject. I don't know why, but my mind is having a harder time withe the needle stick. It really doesn't hurt, and I have to keep chanting that over and over to myself. It took me 15 minutes yesterday to give my self the shot which should take 3 minutes tops. I don't know what to do, but that is going to get extremely annoying, oh wait, it already is.

Need to get my alarms tested

The 1am and 5am did not go off again. Took more Ibuprofen at 7:30 when I woke up, but it has left me feeling tired and kind of groggy. I don't hurt too much and I didn't wake from any fever so that is fantastic. Hopefully today will be mild at work. :)

Another day

Just another day. I haven't posted in a while as there does not seem to be any changes of note. I think the IVSM is not as 'alive' as it was at first, my balance issues while standing are creeping back. My fatigue levels are starting to come back, but I can still stay off of the chair to dress and my arms have not had any shaky feelings.

I went for a EKG yesterday as Dr. M wanted a baseline for future reference (as my checkup was great) in case anything declines. I am to have a chest x-ray for the same reason, because my breathing is great right now.

Shot #11 I think is tonight and I have no inkling that it will be bad. I think my body really is finally getting the hang of this. I am very glad for that.

Alarms didn't go off

So I didn't keep up my Ibuprofen levels overnight. I didn't have the fever so that was nice, but I feel simply terrible. My bones hurt and I am exhausted. I took 600mg at 7:30 and we'll see how the day progresses.

BOSU Baby!

Great workout today with Marsha. Got back on the Bosu and did it! Balance with curls. The first set she was touching my back a bit and that helped, certainly for confidence, but it helped me know where I 'was'. The second set I did mostly on my own, but had to step off once. Not too bad considering I've not been able to do that for a loooooooong time, more than a year certainly. Overall really good workout.


Shot #9 was tonight. Starting to feel like a normal routine a little. It is still hard to stick myself but it felt like a normal thing to be doing (an odd thought indeed). Keeping the Ibuprofen regimen from three weeks ago since it has worked for two weeks.

Hanging stuff around the house tonight. Towel bars, mirrors and such. The house looks like it is starting to come together.

Shot #8 is in the bag, err...body

Well #8 went in tonight. No fanfare there. It is still difficult to stick myself even though I know it doesn't really hurt. Perhaps after a few hundred it will get easier. Not feeling bad yet although I don't expect to until 11 or so.

I have no mentioned much about my symptoms lately as they are fairly static. Things have improved from the IVSM treatment. I can put on my pants still without sitting and my leg tremors are not as bad. Walking is still fairly easy although right now it is ahrd since I went to see Marsha tonight for training. That is always an adventure. Similar excercises but I never know just how hard any single one will be until I'm there. That is a good thing so my muscles don't have a memory but it is funny at times. Tonight my legs were shaking terribly doing planks, it had to be funny to watch.

All in all feeling pretty good. I could always use more sleep, but that is true for everyone it seems. I need to get my bloodwork done to see Dr. M next week but the paperwork is in my dresser, in the garage, at the other house. Not convenient. Julie says she can get it for me tomorrow.

Shot #7 was much better

Well shot#7 was last night. Timing was a bit different and I'm not sure that was the reason but it certainly is something I'm going to try next time just in case.

I had a headache early in the day so I took 800mg Ibuprofen about 2pm. Then I took another 800mg Ibuprofen about 4:30. I took my shot right at 5 and then went to work out with Marsha at 6. I took another 600mg Ibuprofen about 9pm, again at midnight, 3am and 6am. I did not have a _real_ fever that broke. I may have had a mild fever but it is the 'break'ing that gets you all sweaty and uncomfortable in the bed in my opinion. That never happened. I had to work late / overnight so I am tired, but the shot did not really mess me up like the previous ones have. Let's hope it is the med rotation (so I can keep it up) rather than a fluke.

My symptoms are improving a bit. Yesterday marsha had me high-stepping (for the first time in years really) as I normally could not raise my left leg enough to get my knee 'level' (that is the best wasy I can describe it). I did it 10 or so times in a row yesterday and showed Jule when I got home. Very exciting indeed. Just further proof that I can put pants on again without sitting! Walking is a bit smoother (continues to be nice, much fewer foot drops and drags, trips, etc.). My vision is back to 'normal' if I didn't mention that earlier. The solumedrol made my vision really blurry for days.

Troy, I don't know if you remember but you asked if I could raise my toes while standing once while we were talking at church. Anyway, I couldn't on my left side, but I can tonight. Very cool indeed.

Its been a week now

...or nearly so. I haven't posted as changes are slight and I wanted there to be enough to report. My taste is basically back, nothing in particular has stuck around that way. The heartburn comes and goes through the day. I think I'm going to have to keep Tums or Rolaids on my desk. My symptoms are in some ways better, although slight in my opinion. I can put on my pants now without sitting down which is a small thing but certainly noticeable. I think I walk a bit smoother, but no one else has commented on that. My brain fog may be better but I am sensitive to losing words and it still happens so trying to figure out if it is less often is not something I can really do. I've been taking Vitamin D3 (about 10-15000 IU/day) trying to see what it does for me. From another anecdotal source it is a good thing but may be like the mB12 and take three weeks for me to notice it.

Ice Cream saves the day

Well it has been about 36 hours since my last post and I'm doing much better. I am not nearly as wiped out and my taste is coming back. I had some Rocky Road ice cream just a few minutes ago and it was GOOD. Hellelujah for small improvements. My leg tremor (clonus) in my left leg has been interesting this evening. It has started (twice so far) and instead of going on forever till I make it stop with my hands, it stops on ts own. It is still doing it, but not as severely. When it stopped both times it felt a little odd in that I could almost feel it wanting to start again, but it didn't. More as notice it.

I don't feel like me today.

I wish there were better words. If there are I cannot find them. I am tired (and perhaps that is because of the meds keeping me up a few days ago), really more like dead on my feet. I am weak and am having trouble stringing thoughts together. Talking takes effort. Everything is just slow and thick and bizarre. I do not like this and hope it passes quickly.

Slept better but odd morning

Just got out from church and teaching the 3rd graders. I'm very weak
today. It was hard to get the toothpaste out onto the brush. I had
trouble holding my coffee cup without letting it spill. My leg flutter
when stretching this morning was very much reduced. The spasic
stiffness that happens when I stand (for example after church service
was over) was much reduced. I'm not sure what correlation this may
have beyond today but it does seem like it is easier to 'just walk'
and other things seem lessened, but I am just overall weaker. Oddly
though I slept better last night than previous so the early morning
yesterday along with no IV lines last night helped. The bad taste in
my mouth remains although I don't notice it until I put something in
my mouth, which then tastes bad. Coffee was barely tolerable and the
doughnut bites were bland at best. Headed to subway so hopefully with lots of peppers I can taste again :)

Last bag is in. State of the union

Well the third and last bag of this round finished about 4:30 today. Took the IV out with Julie's help around 5:30 after she got back from an errand. The removal was uneventful as expected but getting all the tape off was painful even with the tape 'remover' stuff they gave me.

The bad taste in my mouth didn't happen this time around that I noticed but it seems the change is persistent. Everything but very spicy things are bland to worse. I think I mentioned in the previous post that an Oreo tasted like nothing so I didn't eat any more. That may be a good thing but it is annoying.

We went to mini-church tonight and had a good time there. The food that I could taste was good (we always have some type of food to munch on). The meatballs were good and the 'kick' of some kind of olive thing was nice because it overcame whatever you want to call this taste loss. We went to QT afterward so I could 'try em all' and really no op tastes good. Sprite is still acceptable, but everything tastes funny and some downright nasty. I don't know how long it will be before my taste returns to normal but for now Hot Tamales are my favorite food :)

We had a really nice discussion with others at mini-church tonight. We were both encouraged by their prayers and some one-on-one type discussions about others struggling with medical issues. Camaraderie is a great thing, especially when you additionally have the same Eternal Perspective. Sometimes it is hard to 'walk' the way the Bible says to (in trust and truth, not by our feelings), but we all have to deal with the way we feel. Every day I and others have to get up and walk through taking our feelings captive to what we know to be true. At any rate, it was wonderful and I hope that others were encouraged also.

There isn't too much else to say for today. I'm going to leave the band-aid on my arm tonight but it won't keep me awake like the IV line did :) I hope I can get really sleepy soon.

4am and I'm wide awake

The pager went off just a bit ago (04:03:26) telling me to check a server and even though everything is fine, I'm up now. Very odd because normally I would look at this, see what I saw, and be back asleep by now. Ah well, not too bad of a side-effect in my opinion. Opened a slim-fast and am going to play a little online. I doubt that I'll get sleepy again, and with my next round tentatively scheduled for 3pm today (so it'll be long-over by mini-church tonight at 6pm), I'll probably be well-wired into tonight. The thing is that it is an awakeness (I know I made it up) that is just like a friend Terry said it was. I am awake but not jittery, not like too much caffeine or adrenaline, just a very normal, comfortable, 11am kind of awake.

I'M HOT I'M HOT

Yes. VERY. ALL OF A SUDDEN.

I forgot to post this earlier and I forgot about it until just now. HOT. Comes and goes. Hate it. Anyway, for posterity!

P.S. For those of you who are doing or have done the menopause thing and I was insensitive, sorry...so, so sorry. This is evil.

IV Solumedrol drip #2 hanging now

Yesterday afternoon I got my I.V. line ran and the first 'bag' into me. They are giving me 1gram (1000mg) of Solu-Medrol in 250ml of d5w (some kind of saline with dextrose in it). Anyway, it gave me a bitter taste for about 4 hours during and after the admin (it only take about an hour to get it all in me). They leave the IV in and all taped up with about a 12" leader so I can take care of it without another person helping. It is a little awkward but no big deal. I flush with saline before and after admin and finish with Heparin to prevent clotting in the IV line. Flush and Hep again about 12 hours later, then another dose, etc. Anyway, 3 doses in 3 days. It feels really odd to have this tube hanging out of me that goes right into my vein. Very medical indeed.

The taste is coming on. It has been about 10 minutes. Joy. It is not really metallic to me as I had read before, but more bitter like from nut insides but not as intense, perhaps 1/2 as much, but still that same general taste. Sprite works well against it and Julie is out at QT now getting me some (gotta love a wife like that!).

It kept me up a little last night. I cannot really tell how much of my tossing and turning was the oddity of the IV being in me and trying to no 'mess it up'. I'll know more after tongiht. Well Julie just came back in and we are going to watch a movie while I finish my meds up...

Shot #5 down, solumedrol to go

The shot last night happened a little late (7pm) and about 11:30 my fever came. Overall miserable night with the alarm wake-ups for meds and the pager going off as servers went away from the internet periodically. Tired today, but not too bad. My joint ache but they have gotten better since I woke up.

The insurance finally approved my Solumedrol treatments an hour ago or so (gotta love last minute work on their part). I go in for my first round in 2 hours. I'll post again tonight after we see what it does.

Shot tonight, changing training, getting solumedrol

K. I have my next shot tonight so that'll be fun (NOT!). I am changing my training from Thursday to Wednesday (at least this week, we'll see how it goes). Since my symptoms do not come on for a few hours, it may work better than being exhausted tomorrow for it. This week is a little different mainly because tomorrow afternoon I will be starting my Solumedrol treatments. They will put in an IV port so I can take them over three days. They first will be in their office (supposed to take 1 1/2 hours) and then I'll get to learn how to clean it etc. so I can do the next two at home. I have no idea what it will be like (hopefully not too bad). It is all gravity-fed so no pumps are required. Lots of needles and such this week. If everything works out right, I'll have my shot, my workout with Marsha, then a port and IVs all over by Saturday night. It seems like a lot to get 'in' but better sooner than later we think. Here is a short explanation from WebMD for those who may be interested.

We Arrived

Well we finally got our necessities to our intermediate living space (courtesy the C's). Tonight we'll move most of our things into the garage so the floors can be taken up and replaced. What fun! Anyway, I'm tired and will be I'm sure for the next three weeks as we adjust to living away from home (but only about 20 minutes) and what-not. At any rate, I'll be calling the infusion pharmacy today to see what kind of solumedrol schedule they are putting me on. I'll post again when I know that.

Last night's shot

Well last night was shot #4. The first of my full doses. I got my next month's order in earlier that day so I'm set for the next month. At about 5 I took 800g Ibuprofen, then took the shot at 6. For the first time it hurt. My leg muscle tensed up a LOT for some reason and that was awful. I didn't take it out and try to restick myself, but it took me a long time to concentrate on not tensing the muscle again while I injected the meds. Very interesting and it is sore this morning. I took Ibuprofen at regular intervals: 7, 9, 11, 1, 3, and 5. The fever was as bad as always which was annoying since I go from freezing to roasting and that lways wakes me all the way up. The pager also went off three times so all in all I didn't get much sleep. I feel fine though, no real other after effects. My joints are a little sensitive but nothing like they have been in the past.

I called Dr. W last night and my MRI results were uninteresting (that is a good thing). They are materially the same as they were 15 months ago. I asked about the solumedrol treatment and his nurse will call me back about it.

Last day o the month

Have to post once more just to say I did. :) Feeling fine today. Yesterday I felt really yucky. I was tired most of the day and I just felt 'odd'. It is very hard to describe the feeling other than a sort of buzz or something. It happened on and off through the day, and was mainly in my arms if I had to narrow it down a bit. Certainly I didn't feel anything odd in my head or neck like that. At any rate, Julie and I agreed that I need to call Dr. W's office and see if I can see him sooner than originally set. We want to see when he can set up a round of steroids for me. I don't really know what that means or entails, but this was way too odd to overlook.

On another note, we are getting ready to have the floors redone in the house. I'm looking forward to wood everywhere.

Post Shot 3...

Not too bad this time around. The ibuprofen and earlier time did help quite a bit. I need to shorten the intervals ofr ibuprofen overnight though, I still had two fever / feverbreak spells which was not too fun and interrupted my sleep cycles in addition to the med wake-ups. The day was fine and I'm good now. Still tired from not enough real sleep, but ok.

Went out to Texas Roadhouse for a steak with mom and the family last night. The steak was nice as I haven't had one in about a year.

Shot #3

Well today is shot day. I took 800mg of Ibuprofen about 30 minutes ago and took my shot (3/4, next week is full). The boys watched tonight and had a bunch of 'did it hurt' questions. I'm planning on another 200mg at 7pm, 9pm, 11pm, 2am, and 6am. I am hoping that keeps my side effects in check better than last week.

I'll post again tonight if I notice the decline.

Normal for one more day...

Well things have been back to normal this week I'd say. We went to the lake with the kids and went swimming. As usual that wiped me but I expect that anymore. Julie and I have a plan for my shot tomorrow night. We'll see how it goes as far as side effects. Not much to say but I didn't want to be silent for too long.

Thursday

Well I'm told that I am back to normal. It was said this morning that I "could have given lessons to women on how to PMS". If that isn't a description... Anyway, glad to know that is over and I think I may plan to stay in bed longer as well as take the shot earlier. Will see next week.

more...

I just have to say I still 'feel contagious'. I have that feeling that if anyone were to drink ofter me or touch anything I have they might get sick too. Just completely weird to feel this way and NOT be sick.

The morning after

Wow. Where to start. Took the shot (1/2 dose) at about 11-11:30. Had taken ibuprofen at about 8 and 10. Took 1 more as I got in bed, I'll say 12 for this purpose. At 5:30am I wake up to bad shivers, 0 energy, and achey all over. I took some more ibuprofen and made it to bed, bundled up as best I would and was awake with the shivers for another hour. I finally got a touch of sleep before the alarm woke me at 7. I woke up cold, still no energy, and still hurting. With the exception of the fever, my symptoms remain. All of the work I've done to get rid of fatigue are for nothing today. I'm as tired as I have ever been. It is hard to walk at all. It feels like I am constantly fighting gravity. Every joint hurts. Not 'pain' like needles but ache like a bruise. They aren't stiff, but if I touch them (rub etc.) it irritates them. Just an absolutely bizarre and terrible feeling. I hope to be better as the day progresses. As long as I sit still, it isn't too bad.

I also had a very bizarre dream in my fever pitch. I'll tell the tale here, but feel free to ignore it as it is REALLY wierd. Oh, and it will help if you play Warcraft because there are references to it. So the stage is set by me being me, Kelsey my dog being a shape-shifter into Gandalf the white (visual picture for you). There is another dog, the color of a golden retriever, but short-haired and slightly larger than Kelsey, perhaps 20 pounds. So 'we' (Kelsey and I) have a suspicion that the other dog is sneaking out at night so we pretend to be asleep to follow it. Of course, it leaves and Kelsey turns into Gandalf and runs after the dog with me in chase. We run wherever to find 3 Dark Iron dwarves fighting a huge Jarmungar (much like an Ulduar event) in the snow. There is a cave opening to the right, nearer to us, and as you go in the distance, you can see we are at the base of a snow cliff, on a ledge that falls away again to our left. Anyway, this yellow dog runs at them all and they all disappear when he gets there. No dog, no anything, just me and Gandalf and snow. We decide to go into the cave, where we are at the bottom of a very large shaft-like room. There is a ledge near the top on the far side. The middle is generally hollow (like a well) and who knows how far down it goes. Like a circular staircase on each wall, there is a path going to the top ledge. In the middle there is also a path, but it has a parabolic curve to it so you could never climb it, just slide down it. So there we stand. Behind us the 'bad guys' reappear and we take off around the side to the top. When we get to the top they decide they need to get us and start scrambling up the middle slope. No problem except for some reason Gandalf loses his footing pulling on my feet and I'm holding on to the ledge and they try to get us. My grip fails, we slide down, knocking the dwarves off the sides down the well shaft and we both splat the Jarmungar against the lower wall. I wake up. Bizarre Bizarre.

Shot #2 tonight

I'll post again after I do it. Certainly if I have side-effects. Just lettin' the world know. :)

Monday

Today is weird. Surreal in fact. I am wavering between throwing up and crying and being angry. I'm all over the place. One of Chandler's friends from school is having brain surgery today. They found a tumor the size of a pool ball in his head. We are praying as many others are, but again we feel so helpless. It is not in our control and I can only imagine, and that not very well, what it must be like to have your little boy being cut on to save his life. They don't know if it is benign or malignant yet, but just to have him in that situation... It makes me take stock in the relationships I have. I love my family and hope they know that. It also so shadows anything I may be dealing with. My issue seems petty to me considering the life-struggle he is going through. Anyway, just had to get that out.

Mowed the lawn tonight

I do that from time to time :) My leg is filled with lead now. It is quite amazing how exercise just fatigues it so badly. Hrad to get it up and over the edge of the tub to take a shower, let alone not fall down while in it. I was thinking tonight after I got out about how I used to get dressed standing up. Sure, lean a little against the bed to get the socks on but all in all, standing. I miss that. I have a nice ottoman in the bedroom I sit on to put my pants, socks, shoes, etc. on. I can stand still and put my shirt on sure, but there are a number of things I now do sitting. Just an observation.

I still have not felt any ill effects form the Avonex injection. That is great. Next one is Tuesday night. My left ankle is hurting again in the smae place as a few months ago. I have no idea why. I would like to at least remember the injury. Go figure.

Granite is in

I spent the evening redoing all of the plumbing since our granite countertops were installed today. I'm tired but I'm glad it is done. They are beautiful. Not been too tired as of late (once I get going in the a.m.). My insurance will not cover the Avonex lie other meds so it will cost me about $3000/year. I have told the manufacturer I am interested in their assistance program so we'll see what happens there over the next few days.

Zero hour came and went

...With little pomp and circumstance. The nurse came at 7 this morning. We went over the instructions and such (just a formality really). The best part was having Julie right by my side the whole time. I couldn't ask for better support than that. The whole thing, while EXTREMELY nerve racking to poke myself with a needle, was really a non-event. It did not hurt hardly at all (much less than arm shots, taking blood, etc.) and certainly the actual medicine delivery did not feel like anything. I was expecting to feel some side-effects today, but with the ibuprofen I've taken, I have no real after-effects that I can tell. About an hour after I was feeling a little tired, but that could have been lack of coffee. My injection site is not sore or anything like that.

Biogen called today and had me call my insurance to verify they were 'moving me along' and they had faxed my Dr. about authorization for the prescription. I called Dr. W's office and they did get that fax so that should go back to the insurance carrier tomorrow. This may be less of a deal than I had expected (let's pray it is).

Anyway, so far so good. I'll inject again next Tuesday evening and then moving to Wednesday nights.

Tomorrow morning...

Well it is 11 and I'm nervous about tomorrow morning and the whole nurse / shot thing. Reality is closing in on me. Anyway, headed to bed, going to take some advil... will let you know how it goes.

The Avonex train is moving

I talked with Biogen (makers of Avonex) today and I will get my 1st shipment tomorrow. Monday the nurse will come to the house to show me how to do the injections. This first month will be a ramp-up to full doses (1/4, 1/2, 3/4, then full doses). I also got in my Vitamin D3 last night. I am starting that as well. So far, nothing noticeable.

New Week

Well my mind is reeling. There is so much I've been reading and talking to others about (as far as treatment). I talked with Kim (a PA friend of mine) yesterday about the solumedrol and he basically said there is little to worry about, certainly in the short run. Take the meds and see what it does for me. He certainly thinks the other can be done, but he explained the benefits of high dose steroids for inflammation and since we are not talking about a long term course, to do it. Anyway, I trust his opinion very much and I think his was the one that has really changed my thinking. His description of the side-effects and such were a great comfort (they aren't as terrible in all likelihood as I had imagined by others' descriptions). I'm going to call my neuro today and see if I can get in to talk to him about the specifics he had in mind.

Beyond that, I have been waking more often with the buzz / vibrations going on in my arms. This morning was no different if even a bit worse. I have no direct comparison to the feeling other than it is a very weak vibrating feel that you couldn't see I don't think if you were looking at the muscle, almost a tingle, but to me that implies a bit of prickly like the feeling when your foot or something is 'waking up' from 'being asleep' which we all have had. The best comparison is what is feels like if your cell phone is ringing (on vibrate) on the bed with you a few inches away. You can feel it, but it is very faint. This morning it was in both of my arms and hands. Very odd indeed.

Went to the doc yesterday

Went to see Dr. M yesterday to talk about the solumedrol. He is so much easier to get in front of than the neuro. That said, he is not thinking that is where I want to head just yet and we are talking about Thiamine, Vitamin D, Calcium, and Niacin. Very interesting research he does for me. At any rate, we are going to explore these much like I've done with methyl B12. If they don't have any effects, then we can do the other. I feel much better about this approach. I'm going to try and call Biogen today to see if they have my paperwork yet.

I have a lot of energy today (compared to yesterday) even though I mowed the lawn last night. I did get to bed earlier than normal so I know that has something to do with it, but I'm unsure just how much (it was only an hour).

Julie and I get to have lunch together today (they boys are in music camp) so I'm looking forward to that.

Back from Branson

Went for a couple of night this time. We traded some time saying no to a timeshare for the hotel. Easy enough. If we were resort people when we travelled, and had the money of course, it actually looked like a good deal.

Anyway, enough of that. The walking was not bad. The weather cooperated very nicely. It was not too hot and we got a couple of showers that also helped keep it cool(er). At any rate, it was quite a lot of fun. We got to swim in the hotel pool (which the kids always love) and I think that was more tiresome than the walking itself. I had three comments about my walking stick this time and I don't really know how to respond to it (them). Certainly I did not blow them off, but tried to make light of it. It certainly helps more then I can explain in a few seconds, but I don't know exactly how to approach it. Julie and I thought the best answer would be one that may take them off guard and be a bit funny too. I welcome suggestions but we thought it would be great if anyone asks something... "Do you hike?" or "What do you use that for?" I could reply "If I didn't hold it up, it would just fall down and lie there. I can't have that, Can I?" and leave it at that, of course with a grin. Julie and I sure laughed at the thought (perhaps we are the weird ones!).

Back at home is a nice feeling. I can hardly wait to sleep in my own bed.

Removed It

I didn't like it. Turned it off. :) Heading to Branson this weekend.

AdSense

You'll noticed I added AdSense. I hope it doesn't offend anyone to show some ads on here. If you click fine, don't fine. I cannot ask you to do that. Feel free to comment and say 'No Way' and I'll take it down. I'd much rather people keep up with me than be prodded to buy stuff if it bothers them.

Moving the ball

Julie is taking my paperwork by the Dr.'s office today so they can get that signed and faxed to Avonex. Went to bed early last night and caught up on my sleep; feeling pretty good today. Stretching in bed this morning made both legs flop around (instead of just my left). I don't know how long that may have been going on (I don't remember talking about it), but at least now it is documented today.

MRI is over

MRI lasted about 45 minutes in the tube. Took a chunk of my afternoon though to get up there and wait and such. Don't get me wrong, they were efficient and very kind, no complaints of any kind. There is just a lot logistically to do: clothing, get the IV line ran (for contrast), paperwork, etc.

I'm no expert at reading the films so I cannot comment on what they look like. I'll call to get a copy of the report in a few days / a week. I didn't get by the Dr.'s office to drop off the last of the Avonex paperwork today so I'll do that tomorrow.

Early to bed helped

Feeling a bit feisty today. Certainly not as run down. Drinking a ton of water so the IV goes in easy this afternoon for the MRI. I am a bit apprehensive about the results (no more than I think anyone would be). I will be taking my Avonex stuff by the Dr.'s office on my way to the MRI so that ball should get rolling soon. I still have not decided on the Solumedrol treatment. I think that may depend on these results. If there is a lot of activity, it will sway my feelings about it.

Very tired today

I don't think it is 'directly' MS related (but it sure does not help). Have been up late the last few nights and having the pager go off through the night for notices and such does not help. Anyway, MRI scheduled for late tomorrow afternoon now (If I already posted that, sorry.) Have my workout with Marsha today because she has plans on my 'normal' day.

Wicked was great!

Absolutely wonderful! The best story in a musical yet (in my opinion). The production was as good as anything I've seen (on par with the Disney productions and Phantom).

Well as we talk, we are more convinced that Avonex is the right answer. The question is whether or not to take Solumedrol. The benefits seem nice, but oh the side effects during the IV treatments...

Heading to Wicked

The kids are spending the night at a friend's house. We are headed to
the PAC to watch Wicked.

I sent in some forms today to get the ball rolling for Avonex. More to
do next week. Also scheduled an MRI for next Wednesday.

Back from the Neuro

Well it seems as though there is a ton to report. I don't really know exactly where to begin, but here it goes. Oh, and I registered mymsfight.com today so you can just go there and you'll get here from now on. :)

I met with Dr. W today and he is VERY nice indeed. He really is the person I needed to go over this with. He was sure of what he was telling me as we talked, very thorough (as he redid most of my first 'sign' tests (some I failed for instance: Hoffman's Sign, Romberg's Sign, Babinski's reflex test, and of course my Visual Evoked Potentials test from last year which, in his words was "Abysmal"), and chose his words carefully so there was no ambiguity because of connotation. All in all a very good exam, and I felt taken care of, not hurried.

He said a few things that really impacted me. One was that as research progresses 'they' are seeing that MS progresses faster and more aggressively in men than women. That is interesting because MS strikes about twice as many women as men. We also can note my changes in symptoms over the last year very effectively. He basically said that I needed to be on a 'commercial treatment', end of story. His delivery though was so different form Dr. D's. His manner brought forth an honest concern for my health, not just a cold factual statement. I wish there was a better way to say that, but I cannot think of one at the moment. He gave me a lot of literature about Avonex, Copaxone, and the possibility of a drug trial.

He is checking with my insurance to get another round of MRIs done so we can compare any visible progression. I do not know how that may or may not effect the starting of any other treatment.

After much discussion, Julie and I have ruled out the trial, mostly because of the chance of placebo, and we just don't think that is a wise risk. We then decided to go with Avonex mainly because of the dosing schedule difference between it and Copaxone. Dr. W said he would reccomend Avonex most but some people fear the longer needles and the higher possibility of side-effects. Both of those don't seem to bother me as much as the daily rather than weekly injections. I get tired of taking my vitamins every day, let alone getting a shot. So once again... Laziness Reins Supreme! I love that. Well, you know. At any rate, there will be plenty of stuff to 'do' as I talk again to him and his staff in the next day or two about what my next steps are. It will be an interesting ride I'm sure.

Please pray for me and Julie; especially Julie.

Laziness reins supreme!

Well again I am struck by the lazy gene that keeps me from taking time to post. It is ridiculous really as once I get behind then I forget what has been going on. Seeing the obvious flaw in my abilities, I will attempt to reconstruct the last couple of weeks for your viewing pleasure.

We went to the lake for the 4th of July. Spend a lot of time in the pool and that took its toll on me. I was very run down for a number of days after that. I wanted to sleep all of the time but it didn't feel like it was doing any good (frustrating!) when I did nap. I then proceeded to leave my B12 at the lake (I love forgetting things). I reordered the original B12 I bought (they dissolve faster) and got them a few days ago. I also made alarms for my iPhone to remind me to take them so I can get in a good rythm about it.

I have an appointment wiht my new neuro tomorrow (Dr. W) so we'll see how that flies overall. I've noticed a couple of what I would call new symptoms but they have been infrequent as yet so I'm not too sure about it all. My right arm has 'vibrated' a couple of times. It happened when I was lying on my right side with it under my pillow so I have no idea what it may have looked like. It felt like there was a cell phone on vibrate next to it is the best way I can decribe it. It only happened for 10 seconds or so and stopped as soon as I moved it. It may have just been an oddity because of the way I was lying. The other has been my left hand / arm. The involuntary clonus-like twitches tend to make my hand move and they 'feel' they same in that they seem to have a mind and desire of their own and until I can 'make' it stop, it keeps going. The hand / arm pulses are much shallower than the foot ones, but it is very disconcerting. These too have only happened a few times but since they are visible and relatively difficult to stop...it seems like more of a change.

The heat is evil. With temps in the shade over 100F (39C) it saps me quickly. I've been good at staying inside as best I can.

I'll post again tomorrow after meeting with the new doc. Hopefully I'll have my MRI appointments incoming too.

Back a week

We've been home a week now and things are starting to get normal again. Work has been busy as I would expect, but not too bad. Russell has been really taking the load and I appreciate it. My MS was pretty good all-in-all over the Disney trip but I don't think there was a moment (other than the beach) where I was not using my walking stick. It was a requirement for such an undertaking. I've noticed that without it my leg has been much more fatigued, even in the short time I've been home and with the less strenuous exertion that brings. I'm looking forward to my upcoming appointments and MRIs to see what has changed.

Thursday at the Cape, etc.

We spent Wednesday at Epcot too, touring the countries and such. We had lunch in Italy and the food was remarkable. Much better than stuff we call Italian around here. We got to see street shows that were very entertaining and had pastries in France.

On Thursday we went to Cape Canaveral (not the Kennedy Space Center though, we have family who lives there). We spent the day in the ocean Boogie-Boarding (is that how you spell that?) and getting sunburned. We were trying to be good by putting on SPF 70 sunscreen often but did not realize until it was too late that the salt water just takes it off. Julie's legs were burned badly along with my back and stomach. We spent the rest of the trip trying to feel better (and are just now getting back to normal after the peeling and such).

We spent Friday at Hollywood Studios and had a great time there. There were a couple of rides we did get to go on because the lines were too long and the FastPasses had been given out for the day. The boys really liked the Indiana Jones show and the Star Wars stuff (imagine that).

Saturday we went back to Magic Kingdom and finished up our rides there we had not yet gotten to ride. We went back to the room relatively early so we could start packign and let the kids swim once more in the pool.

Sunday was our long trip back, but this time without any flight messes. We got home about 4:00 if I remember right. It was really good to be home.

Tuesday at Epcot

It was a lot of fun. We sent on Soarin' which is a truly fantastic ride but you have to do it FastPass, don't wait in line. Too long of a wait and you'll be disappointed. That could be said of many rides but they are certainly worth the 20-30 minutes you find most often. When we left Soarin' the line was 130 minutes long. That is just a disaster for expectations.

We had some really good ice cream bars today (yes shaped like mickeys ears). The ice cream was real ice cream (not the cheap stuff you can get). The chocolate coating was real nestle and was more like dark chocolate than milk. Very good. We have had really good food here. I was expecting it to be a bit or cafeteria quality and even though the service resembles McDonalds, the food is very good (I am very surprised).

We walked all over the 'near' side of Epcot today, saving the countries (far side) for tomorrow. All of the rides were fun and educational like I was expecting. Even thought I've taken my Bs today I am very very tired. My feet hurt and it was about all I could do to make it back to the hotel. I'm glad to be back and not have anywhere to go. On the bright side as I sit here typing I don't feel like I want to go to sleep right away. My body is tire but now that I've had shower I feel like having a quiet evening of TV, even though my leg is irritated at me :)

Monday at Disneyworld

Well, here is the rundown so far. We flew to Key west Friday. That was an adventure! First our flight form Tulsa was delayed nearly three hours. That of course made us miss our connecting flight. We then got on a standby list for another flight. Not too big of a deal as we saw there were 8 open seats on the plane but there was a 'weight and balance' issue so they did not want to let all of us on there. Luckily the captain let us on and we landed in Key West about 9pm. It was raining there so we could not get our bags until the weather cleared. We finally got our bags about 10:30 Friday night.

We went fishing the next morning about 7 and it was a hoot! I've never been fishing in the ocean, so catching gray snapper and shark was neat. I didn't catch anything big like that, but what I caught was fun and we got to see lots of neat fish (like barracudas) and a couple of shipwrecks.

We drove to Orlando yesterday and it took about 8 hours with stops and such. When we got checked in, we went to Magic kingdom for the fireworks show and some late night rides.

Today we went in the morning and stayed until about 2:30. We came back and swam until 6 and then cleaned up for dinner and back to Magic Kingdom for more evening stuff and fireworks, etc. The fireworks show was fantastic. Actually it was better than that. The best show I've ever seen. We were in a different part of the park and it was literally over our heads. The show was different from the night before and a whole lot better. Finally home at 10:30 or so. Very tired feet. It was all I could to do walk that much. My stick was acting more like a cane at the end of the day.

The security guard the second trip in gave me all kinds of grief about my stick. He said he had to make sure it wasn't a sword...A SWORD! He was trying to unscrew this n that and I took it from him before he broke the thing (since it collapses). So I fully collapsed it and asked "Do they make swords this short?!" Anyway he was all in my face for trying to defend myself. I got very frustrated. He actually asked me if I needed it to walk. Are you kidding me? Would I carry around a stick for my health? Oh well, enough of that. Lots of Bs in me, lots of water, lots of walking. Hope I survive. :)

Late Nights

The last two nights have had me working to 10:30 and 11:30 to get projects wrapped up before vacation. I'm so glad the B's are working. They let me function like I need to.

Not much to say other than Julie is packing like crazy and we are both making lists of stuff to remember everything. I got a bunch of DVDs converted to the IPhone format so we can watch movies on the plane without getting out the laptop (joy!).

Really looking forward to this trip.

Oh, and Sky, thank you for your comments. It is nice to know you care enough to read this even though we haven't had a chance to chat in ages. I hope you are doing well also.

Countdown to Vacation

Well the countdown has begun. Only a few more days to our Florida trip. Julie started making the packing lists so we do not forget anything. The kids are getting excited as well, which is fun to see.

Work has been moving toward getting things in a good state before I go. The two networks we wanted to have in place, are pretty close to meeting that goal. We got our hardware in a day early and that really helped.

I have continued taking my mB12 (3-4 mg daily across 3-4 doses spaced 4 hours or so apart) and my energy levels are great (as measured by my ability to wake up in the morning). This morning was no different form others in that the alarm goes off, I snooze, but do not go back to sleep; I just think about my day.

I went to see Dr. M to get by blood work results. Great News! My total blood iron is down to 98! (from 179 in January and 207 last July) Woohoo! That is fantastic since high iron is so bad for your muscles (read=hard on your heart). My other blood stuff seems to be good also now so that has me happy.

I am looking into LDN (low dose Naltrexone) as a therapy I am interested in. It almost sounds too good to be true when you look at what it has done for others. I am trying to maintian a descent balance of optimism/skepticism so I am not disappointed if it does not work for me. Dr. M told me to look in to it and boy am I impressed. I may have to wait until I switch neurologists to get a prescription... but I looked online and it looks affordable. We'll see.

2-June-09

I wish I had more time to post. I fell guilty not posting more often. My energy has been coming back more and more. I'm starting to feel like myself again. I was telling someone just the other day that I feel more like I did a few years ago, in that my leg was an issue but the fatigue isn't there beating on me every day.

I installed a new garbage disposal (our old one was leaking) and 2nd sink plumbing over the weekend. It was nice to have the energy to do it. My morning awake'ness has been consistent but for the last two nights. Have been up late so I have an explanation outside of a b12 thing. I've been taking them still about 3-4mg/day spread throughout and I just cannot get over how much better I feel.

I had my blood drawn last Thursday (I think) and will meet with Dr. M this week to go over the results. I need to schedule my MRIs this summer to see if there has been any visible progression. I'm trying to get into a new neuro also for a combo 2nd opinion (just good practice I think) and bedside manner check :)

Work is ramping up as we bring on new clients and trying to get stuff done before vacation. It will be nice to get away with the family. I can hardly wait.

Chandler's 8th birthday is tomorrow. It is amazing to see the kids grow up. It happens so fast (I didn't really understand it until I had my own). They are both a joy to be around, and it seems to get better as they age.

Back from the long weekend

I feel like there is a ton to say today. It has been a long while since I last posted.

Last week was a bit of a bearcat in that there was so much to do at the office to get ready for the long weekend. We got the new server hardware in and OnTrack was able to get us the data we needed. We fought all day Friday trying to get the system back online but the Tech Support for the software vendor was not helpful. Russell is waiting for them to call bacl this morning to continue the fight.

I've been taking my mB12 regularly and have noticed my energy returning. Julie went to N. Carolina to see a friend of hers over the Memorial Day weekend. I went to the lake with the boys and my in-laws. We swam in the pool (the lake is still too cold) and played games and watched Madagascar 2 (which is funny).

I used my waling stick just about 100% of the time while there. They have stairs and it was nice ot have my own mobile handrail. I got more sleep than usual becuase I had help keeping track of the boys. I feel pretty good all in all. I need to get my bloodwork done this week; I've needed to for a while but have not gotten it done.

I am really exceited that my energy seems to be coming back. It takes a while for the B12 to really get my system up, but I now bhave been through two 'cycles' of having / not having and I really notice the difference. The thing is being patient for the results to come. It took a couple of weeks to start feeling the differences, but nearly no time at all for them to dissipate. Dr. M was right about having to work to get up to a maintenance level.

Now I'm on to this weeks' work and short weeks are always wierd.

tis Friday again

Well the final verdict for that oh so broken machine is... new machine! We sent the drives off to OnTrack to see what they may be able to get us. Not a good situation.

My mB12 came in! So now I'm trying to get back in the saddle with that. I bought a different brand this time and so far I'm not too impressed. The tablets dissolve much more slowly (and I do not know if that is a good or bad thing). At any rate, I will be rebuilding my levels over the next couple of weeks and we'll see if my energy levels build again.

Last night working out with Marsha my left arm kind of 'gave out' when we were doing chest press. It is hard to describe what it felt like, but as I was pushing, it just couldn't anymore. I could still move my arm like a wing (imagine chicken dance) and my wrist seemed to be OK for stabilizing the weight, but I just could not push it up more than 3-4 inches. Very odd. It seems to be normal this morning. It is most likely just fatigue from other exercises, but I want to write it down just in case.

Spoke too soon

Well the tapes cataloged BUT the data is from LAST OCTOBER! I cannot believe it. Just cannot. Well anyway, started a catalog on another tape. Will see if it is in the same condition.

Late night working

Had a client's server die today. About the worst I've ever seen, and that is saying something in my line of work. Last night is dropped two drives out of a Raid5 array (=terribad) and it seem the motherboard and perhaps the controller itself may be toasted. To put a cherry on it, it is 4 days out of warranty and Dell will not do anything about it. We even offered to buy the extended warranty for it, but they won't do that unless it is 'currently perfect'. So the parts are about $1000 +/- and then we could buy the warranty, yeah right. Anyway, I built a box from parts to see if the tapes they have actually have data on them (we just took them over as a client a few days ago so we don't know how well the backups may have been maintained). I just started a catalog on last Friday's tape. I sure hope it is chock full of data.

Still tired. Still no mB12. Have been taking my other vitamins though so I'm not 100% shot. Vivix and Vitalizer are keeping me alive at this point. I know, that sounds a bit exaggerated, but they do make a huge difference for me (and Julie). Julie and I have really noticed me being run down since my illness and not having my mB12 to get me going again.

GOOD NEWS! I just checked on the catalog and it is counting data! That is fantastic. Well, I'm going to head home now and see Julie for an hour before heading to bed and coming back here.

Friday

Its Friday again and I'm oh so tired from my workout with Marsha last night. That is to be expected though. I've reordered my mB12 and put it on auto-reorder so I don't forget. I forgot to order more so now I'm out for a few days and that does not fit into my plan. But now that I'm forced to not take it, I am going to try and see if I can tell a difference without it. My illness a week or two ago really sapped me and I still do not feel back to the energy level I had just before getting sick. I am not sure how long it may take me to recover that, but it was fantastic while I had it. I'll keep this up on my status.

Windows 7 RC Released Today

The RC came out today, just downloaded it and burning to a DVD so I can install it. Yes Windows 7 is a good thing, regardless of what you may have heard about Vista. It looks different from XP certainly, but it is a good thing.

Feeling pretty good today although I am tired of the rain. Carla is working out great at the office. Woohoo!

Back to work

Feeling relatively normal today. I still feel like I lost so much ground over the last couple of weeks energy-wise. Frustrating, but I'm used to not having much energy. Everyone in the house is well, no lingering sickness. I will be getting with Dr. M this week to get my blood work done now that I am not longer ill. Hopefully there will be no issues found that we have to deal with.

Still feeling a little ill

I don't know what has gotten into me. I am at work, certainly nowhere near Tuesday, but my stomach is all upset again today. Just had rice for lunch as to be easy on myself, but I am tired of feeling this way. I am still tired from my workout last night, but we need to get ready for our new employee who is starting Monday (yeehaw!). Took my normal a.m. routine for vitamins and Bs, had my second just a bit ago. I hope to be feeling better by tonight as our kids are being watched by friends so Julie and I can go out. Gotta love Date Nights when you can get one.

Checking in

Well what energy I thought I had, is gone, was gone. Whatever. I went to see Marsha to work out this afternoon and even though we agreed to take it easier than usual because I've been sick, it was exhausting. It really wore me out. I'm sure it will come back over the next so many days, but it certainly is not today :)

Anyway, I just wanted to post like I said I would. Off to bed for me.

Back at the office today

Feeling better today. Woke up before the alarm so I guess I'm rested. There is much to do today that is backed up, but progress will be made. Back on my vitamins today so things are back to normal. I'll post again later today.

Worked from home today

Yesterday I was so ill... I caught what Julie had over the weekend. I did not go in today for fear of spreading what I'll call the stomach flu. I'll leave the details of my symptoms there. At any rate, spent basically 24 hours in bed and it has done me very well. I have energy now, which I've not had for some days. I still have not materially eaten as I have not been interested, but food is sounding good to me again. Julie was great at keeping me in chicken broth and Performance so I'm not really dehydrated. I did not take any vitamins yesterday but did get a B in me so far today. Will get another here in a bit, but won't make three today. I'll be back on schedule tomorrow.

I wish I would've listened

I am still not back up to speed. Yesterday was good in that I got to take a nap for an hour or so and went to bed early. I was thinking about what the PT had said about energy conservation and I did not do that at all. I had it and blew it all at once. Well I certainly know not to do that again. I have had a few offers already to help with the yard work and luckily it does not need it yet (yea Bermuda grass!).

Our new employee should start next Monday so that will be a big help at the office. We had the pool table picked up on Friday so that is out of the way, making the space available again for desks. We have some cable runs to do before that but we have all week. We also got a used A/C unit for the server room and are figuring out how to get it vented and such so hopefully we will save some $ on cooling too in the next month or so.

Not much else to say right now, feel like going to sleep. Off to bed again early tonight I hope as well.

Still not back

I'm still very tired today. We went to a birthday party (a friend's son) and after that, came home and fixed the fence gate. While that was not a lot of work, it was very difficult energy-wise. It was hard to even walk back and forth to put away the tools and roll up the extension cord. I've eaten dinner by now but am still not recovered. Hopefully an early bedtime will make things better for tomorrow.

About last night

Well I have been exhausted today. I definitely overdid it yesterday. My leg has been very heavy today and it seems like everything is difficult. Just standing up out of a chair takes thought before I do it. It has been a very frustrating day in that sense.

Tonight has been more of the same in addition to the normal daily spiral I've experienced for some time. So I'll head to bed early and see what tomorrow brings.

Last night

Last night was an interesting experience for Julie and me. I went to my training as usual with Marsha, did all of that, and when I got home I still was interested in doing chores. I wanted to fix the gate on our fence that is half-broken, put things back into the attic!

So we went to Home Depot (we prefer Lowe's but we had a gift card to use) and got a male hose end replacement (the one on a hose we had was bent up), a new gate lock, and a ceiling fan (for our bedroom, the old one was orig equip and was noisy and the light fixture was ugly).

We then went to Phyllis' house and got the Dish network stuff they wanted returned and then went home and fixed the hose and put up the ceiling fan. Julie and I both were very surprised at how long I was interested in doing stuff rather than crashing on the couch. It was a very interesting evening.

Closer to calling it

Julie and I were talking at length last night about how much more energy I have and how my symptoms appear to be less severe. I want to qualify that because my symptoms are not going away, but I think my additional energy is making them less noticeable.

We both commented how just a couple of months ago we were getting worried about my abilities this summer on a number of fronts. I usually am able to mow the flat portion of the yard (friends help with the hill so I don't fall and have the mower cut my feet off) and walk around Silver Dollar City, play some on the trampoline, etc. There were a number of evenings, really becoming the norm rather than the exception, that I just didn't have the energy to do anything. I didn't want to work out or play and it was obvious that the heaviness in my leg was really getting in the way by the end of the day.

Last night we were discussing how much different I am reacting, especially this last week or so. I have a noticeably larger energy reserve than just weeks ago. I have come home form work with enough energy to be interested in going to the gym and play with the kids. Even after going to the gym and having the obvious decrease in function of my leg because it was fatigued, my body in general has not been so much. I can still have a decent conversation and am willing to not be fully relegated to the couch / floor. I am waking easier than I can ever remember, even when Julie and I stay up late talking (which we have a habit of doing), last night being a good example. We finally got to bed about 12:45 because we were both awake and talking / watching TV. My alarm went of at 6:30 this morning, and while I hit 'snooze' a few times, I am used to actually falling asleep, but did not this morning (nor have I for the last few days after the first buzz goes off).

All in all, I think the mB12 is giving me more energy. The real question that I need to talk with Dr. M about now is (and we have to monitor things I know) whether I maintain this dosage schedule or change, are there other internal side effects I don't know about (blood work and stuff will tell us that), and is this simply a very interesting placebo effect? All to be seen in the future, but certainly interesting results to be sure so far.

Oh yeah

Please comment! I'd like to know who is lurking around and seeing how I'm doing.

Sorry for the delay

Long time in between posts I know. I feel like I need to have something to say though and even though I've been told numerous times that I talk a lot, it seems when I am typing here, I lock up. Perhaps it is the intimidation that my words can be judged forever :P

I worked an absolute ton yesterday. By 4:00 I had a VPN that simply would not come back online and so I drove to OKC to get it working. I did get admin access to it again (as even that was broken) and then left the rest of the work to this morning. I went and saw Julie's grandmother for a bit (got fed and had good conversation, can you ask for more?). I got home about 11:00 last night.

Today has been pretty good so far. I didn't wear my ankle brace overnight, nor today and things are not hurting. I think I'll wear it again just at night for the next few just to be on the safe side.

Marsha gave me a new incentive to lose weight / pants size. She said if I can pull my goal off by June 15th she'll give me a free massage and so I have renewed vigor for exercise; I've been 5 days in a row and would have gone last night but for the OKC trip. I will be returning tonight to the gym.

The mB12 is still a regular habit. I will be scheduling a visit with Dr. M regarding the use and some other metabolic differences I've noticed but I won't go into them until I talk with him (nothing serious). I need a CBC and some other blood tests to make sure my body is not freaking out with it.

My next interviewee is here so I need to go now, but I'll try to post again tonight.

Wow I'm tired.

I barely slept last night. My ankle really hurts.

Longer story. About two weeks ago (I'm not sure when) we had a snowstorm for a day. We went outside and had a great time in the snow but somehow I got hurt. The next day my ankle started hurting really bad. It is an intermittent, very stabbing pain in the 10 o'clock position of the joint if you were looking down through your leg onto the floor, if that helps. There are tendons and whatnot around that area so I have a 70% confidence it is a soft-tissue injury and not broken.

So I have this brace (AXIS) from the time years go I tore up my right ankle and have put it on and off for the last two weeks. Obviously only enough to get over my immediate need and then taking it off and letting it get re-irritated.

At any rate, it really got bad last night. It woke me up at 4:15 and even though I put the brace back on, I did not really sleep after that. Rest yes, sleep no. If I ever actually went to sleep and moved at all, I got stabbed awake in the ankle again.

So, I'm worthless today. :(

The weekend is almost here.

It is Friday. Good Friday in fact. So Happy Passover and Easter!

I feel like I have a lot to say today somewhere hidden, so I'm going to work on this post off and on through the day. If it seems to ramble, so be it.

The mB12 has been taken without fail since I got my instructions for 3x / day. I really do think it is helping my energy levels, but I want to clarify some things as I've been thinking about them.

Tired: For me tired is / was a continual issue. I only rarely feel 'awake and refreshed'. That has long since gone, or at least any material time period of that feeling has. It is probably most obvious in the morning right after a shower but it is transient at best.

Fatigue: For me that happens periodically when my body is screaming 'no more'. This usually occurs after exercise or yard work. My ability to walk becomes greatly impaired and I end up holding on to things just to keep from falling over / down. Fatigue is only a temporary thing most of the time as it will pass in 30 minutes to an hour. Then I'm just tired again. I may be able to get up and go again, but that fatigue crossover will come more quickly than the first time.

All in all, I just want to be clear when I talk about energy levels, for me it is about how close to fatigue I feel. I'll say that for the sake of discussion, feeling a 10 is the most energy I can ever remember having. A 3 would be fatigue onset, and 1 would be an inability to move from the place you fell. I think I start at 6 or 7 most days, and hit a 3 at least once a day. I have long since described my symptoms as a sliding window, where my decline in ability is relatively standard throughout the day as I spend what energy I have. The difference in how I feel at the end of the day depends on how I felt when I woke up. 7->3, 6->2, etc. or at least that is the general idea.

What I've noticed since taking the mB12 is that I have more 7 starts, if I can call it that. I certainly do feel so tightly bound to the coffe cup in the monrings like I used to.

A good example of fatigue is what happened when Julie and I were cleaning out the garage. After a while I got to where I couldn't hardly stand or walk. It is VERY frustrating. She is very understanding, but I don't like feeling my symptoms so obviously. I suppose that is the worst part of this for me. It isn't the day-to-day symptoms that bother me so much as I can laugh about losing my balance into a door jamb or whatever. It is when I really want to do something and simply can't. Anyway, I sat down on the porch for 15 minutes and got enough back to pull the cars back inside, but I was worthless the rest of the day. It also happens sometimes when I am working out, although it is not a good thing to do so we try to avoid that as best we can. Marsha has a pretty good eye for when I'm wearing out, but it can come on very quickly, even in just a few reps, depending on what we are doing and how much my left leg gets pushed.

On another note, work is going well. The guy we hired a couple of weeks ago quit. That was a bummer, but he said he thought he was more cut out for a 'single network' support job and I get that. I've always thought that what I do (we do) is not for every IT person. We have interviewed 3 or 4 people but none have made it back to Russell and me to do the technical interviews just yet. Keep praying for the right person!

Monday

The MS Walk was great! Thank you so much to all of my supporters. It was a grueling walk. 3 miles is a lot longer then what I had thought it was. The last 1/2 mile was very difficult, but I made it. I was thinking that this would be similar to walking around Silver Dollar City, and it was, but all at once!

I have been taking my mB12 3 times a day since I was told to. Again, I have been waking easier and have had a bit more energy through the day, but I am still not ready to directly relate it to the B12 yet. After a month, if my opinion remains, I'll talk to Dr. M. and see what he thinks about going off of the mB12 to contrast my experience(s).

We lost a dear friend (Phyllis) this last week and are taking care of her things this week. We will all miss her.

Getting Closer

To MS Walk 2009!

This past weekend it actually snowed here in Tulsa. Wet, heavy snow. It was fun as we all got outside an threw snowballs and built a snowman that melted the next day. I twisted my ankle and have been nursing it for the last few days. Hopefully it will be back to 100% for the walk. It is 80% there now, only hurting if I get it just 'so-so'.

I have little to discuss about the B12, although I do seem to have more energy as I look back over the last few days. My overall fatigue seems to be lower. Even though I am still tired at the end of the work day, I am not quite as 'exhausted' as I remember being. I have also awoken a little easier over the last couple of days. While sleep and rest can all be attributed to different things, I'm going to keep a close watch to see if bedtime, alarm, etc. are relatively consistent to see if it is the B12 or me being more diligent to 'go to bed'.

MS Walk 2009

I will be walking in the 2009 Tulsa MS Walk on Saturday the 4th of April. You can sponsor me at this link. Or if you like, you can join my team and walk with us! We'd love to have you along.

Status after a few days

I've traded calls with Dr. M and it turns out that I need to take my MB12 at 1000mcg 3 times a day for the first month or so to get my body 'up to speed' and then I should be able to back off to a maintenance dose. I've been taking 1/day since I got them but have only started with 3 / day, (7am, noon, 7pm) this past Saturday. I cannot say that I've had real noticeable / attributable effects, but I certainly have had no side-effects.

I played with the kids in the snow Saturday and ended up hurting my ankle somehow so I'll see someone after I see how I heal over the next day or two. I have a good brace from my last ankle injury so it isn't nearly as bad now as it was overnight (as it woke me up every time I moved).

Oh I've also gone through my posts and other than Dr. Brouse (who has an internet site set up to deal with inquiries about his nutrition-based practice), I've tried to remove listings to my Dr.'s names and left them as initials. This works out at least for now since none of my doctors have the same last initial. I just don't want anyone to try and seek them out directly regarding anything I post here, since this is my story and not theirs. :)

Got my B12 yesterday

It finally got here! So now begins the logging for posterity. They are 1mg (1000mcg) tablets that dissolve under your tongue. I took one last night just because I was excited. I cannot say it made me feel any different, but Dr. M said that it may take weeks or months for me to get to a point of measurable results since the whole purpose if to simply arm my body with nutrients for it to do 'its own work'.

I took another this morning and will be calling Dr. M later today to tell him of my official start and about this blog so he can better keep track of me without phone calls all of the time.

Just for the record, I took it after I had my protein shake and vitamins that I do every morning. My daily vitamins include Vitalizer, 10 x Alfalfa, 4 x OsteoMatrix, 1x Saw Palmetto, 1xZinc. My protein shake is 1c. Vanilla Soy with Shaklee's Chocolate cinch added (but only 1/2 the normal Cinch shake volume).

The tablets themsleves taste like nothing even though they say they have some flavor added. Perhaps they would be terrible without the additive... As it dissolves it does feel a little grainy under the tongue, but it only takes about 3 minutes for it to be completely gone.

Signed Up

...For the 2009 Tulsa MS Walk! Sponsor me! Every little bit helps, even $1. It all adds up.

My Sponsor Page

Home Again

Drove home yesterday from the lake; want to church, etc. I was very tired yesterday, SDC caught up with me. My calves were sore (and still are today), but it was nice to sleep in my bed last night. We hired a new guy Brian at work and I'm excited about that. Looking forward to getting to some projects. My new B12 said it shipped but it isn't here yet :(

Silver Dollar City

Went there today. Took my walking stick for the first time in a 'real' place to use it. We went on the Marvel Cave tour which was a real test of my endurance in general, but also gave me a great chance to see how differently I may feel using my stick. At any rate, it was fantastic fun, perhaps my favorite trip of perhaps 5 or 6 times we've gone so far. The cave tour was not as difficult as they had made us believe, but was certainly as amazing! I made it through the day pretty well. I felt less fatigued than I did last time I went, at least I'm sure in part to my stick, but until summer is fully upon us, I won't be able to fully comment on how much it helped.

Getting Back to it...

Well there is not a whole lot to say other than I've been terribly remiss in posting here. There has both been a lot and then again, not much at all going on in my life. That is how it is sometimes. Some things are crazy and others change very little.

I'll start with what has not changed much, and that / those are my symptoms. Thankfully I have not had a lot of change although it is progressive MS so I do not anticipate having many material events. That said, I do notice that I am fatiguing a little easier and the whole walking / balance thing is still a real struggle at times, especially at the end of the day. I have been consistently seeing my trainer, which helps my confidence as much as it helps my abilities.

So for what _has_ been going on. 1) Doctors, 2) Vacation plans!

1) I've seen three new doctors since my last posts. I saw a Sports medicine doctor 'Dr. S.' (osteopathic / surgery / etc) because Marsha (my trainer, but she is actually a Medical Exercise Specialist so trainer is woefully inadequate a description for what she does for helping me) and I noticed that during certain exercises my left knee would drift outside of the natural 'over the toes' alignment we would expect. In that vein, Dr. S said that it the angles my joints want to be in, that may be a normal issue but with my MS affecting my right side it is being exaggerated. Off to Dr. K, a physical therapy specialist for MS / balance and the like. He said 'Wow, you are very slow to react visually and balance...' once again verifying what I've known for a while :) At any rate, he gave me exercises to do three times a day but I've been remiss in doing them for numerous reasons, including laziness, feeling silly doing them, and the fact that the eye reaction speed stuff gives me a headache. For this discussion we'll stick to laziness as the culprit. The other thing Dr. K mentioned is energy conservation. I heard that and said "I don't want a cane at 35!" and he says, "not a cane, a staff". My immediate response was "But I'm not Gandalf either". We both had a good chuckle out of that and he went on to explain that hikers use a walking stick or staff all of the time to steady themselves and since it takes a lot of energy for me to maintain balance, it would greatly assist me if I am walking more than around the house. I recently purchased a Swiss Gear collapsing hiking stick form Walmart for about $15. It really made me feel decrepit the first time I used it. BUT, on a trip to Eureka Springs for my anniversary, it made an enormous difference as after walking around in the hilly country, I was able to maintain a lot of energy through the day. It had made a huge difference.

I switched primary care doctors form Dr. W to Dr. M (as you can see I'm trying to not name them directly, and also I've been blessed with not having all of my doctors named Smith). Dr. W was fantastic and really the reason for switching is that Dr. M is about 20 miles closer to home and he is personally interested in trying new things (non pharmaceuticals since I have an aversion to that).

Dr. M and I have been looking at something that may help and I'll be posting daily or thereabouts when I 'start'. What we have been looking at what Vitamin B12, specifically METHYLcobalamin (as there are multiple kinds of cobalamin (B12)). Methylcobalamin is what your body ands up producing via some liver processes that I don't understand. What I do understand is that Methylcobalamin is used in the myelin repair process (woohoo for a repair process there). We've no idea if it will help, but it is a reasonable shot. I will be documenting my experience(s) here. Already we have found that inject-able mc has a two week shelf-life and is going to be too expensive to put it to any material test. I have found a sublingual (under the tongue) tablet form that is stable and inexpensive. I will doing my testing with this product (links to Amazon page). I don't have it yet, but this is the place to read about it as it happens.

2) VACATION! We are going to take the kids (and my walking stick) to Florida this June for a week at Disney World. We are all very excited about it.

OK. That is it for catch-up. Hopefully my new trial will start in the next week or so!