Wednesday, August 29, 2007

injection day 2

I got my injection in as scheduled which was a good thing. I did mess up the steps a little bit though, which is, of course, a bad thing. I removed the needle cap before inserting the syringe in the injector. A drop or two came out as I pressed it to set it into the bottom piece... Other than that, I inject the left side of my abdomen, again barely felt anything, and it seems to have worked out OK. I took some advil beforehand since it did give me a slight fever last time - 99.5. I felt a little warm again this time, but by now it's gone away. Or I could just be feeling sick because the Sox are losing to the Yankees. Again.

(not so) fun day

I don't feel quite so eloquent today, well, not that I'm ever eloquent...

Visited the urologist today. It was a really great visit, I'm not emptying completely and the options are miserable. I'm going back on a med I was using previously that may have had positive results and we'll see. After that, nasty things...

I stopped at the pharmacy because there are two things I think I need to feel comfortable with the needles in the house. One is a safe locked box for the medication in the fridge. Two is a safe, impenetrable disposal for the used needles and syringes. They didn't have any, but a women in line behind me said I could use an empty laundy detergent bottle. She was very helpful and seemed to want to share her experiences. In our brief conversation I learned that she had been on Rebif a few years ago. I didn't wask what her experience was like, I didn't ask her if she had MS, it seemed self-evident. She was a nice looking black woman maybe a few years older than me -- and she was in a wheelchair. I awkwardly excused myself, while a part wanted to stay and talk, a part was running scared at an all-too-real reminder of the seriousness of my diagnosis.

So, I ran home, got an ice cream sunday after dinner and decided I had to post this to get it out of my system.

Monday, August 27, 2007

injection day

The nurse came today and instructed me on using the self-injection kit. Although it was a fairly complicated process, it was easy to master once I had done it twice. She dropped off a 'new' Rebif kit, which addressed the Rebiject 2 and had a DVD instead of a VHS tape... vhs tape!

I started off at 8mg while the normal dose is 44. I'll do 8 for the first two weeks, my syringes are prefilled with the correct dosage which is nice.

So, I have to admit I was a little apprehensive when I had the device on my belly, ready to go. But I did it like I was trained and didn't notice a thing, I couldn't even feel it. And so far, two hours later, no injection site reaction.

Sunday, August 26, 2007

Busy week of ms-related appointments

I start off the week with a visit from an MS Lifelines nurse. She will train me on the self-injection medicine. I did receive my Rebiject which makes the actual injection easier.

Then, back to my urologist for consultation on my uhm, bladder problems.

Finally, both kris and I will spend the afternoon working with specialists at the MS Center at Milford Hospital. This is a chance to talk to physical therapists, councilors and nurse about living with MS for both Kris and myself.

Although it's a busy week I'm looking forward to starting my medicine, though it has side effects nothing else is effective for treating the disease MS.

Friday, August 24, 2007

another good soccer game

It's feeling great to be able to play competitively again. Last night I broke the ice and scored my first goal in months - maybe four months. I ended up with 2 goals and 2 assists in an admittedly lopsided win 10-2 for us. That's the first game we've dominated in months as well and it's a pretty much needed confidence boost for the team. Way to go guys!

My legs felt better this week compared to last week's game. My toes were a bit numb and swollen feeling but to a lesser degree. The spasticity (muscle tightness) was there in my right and left quads, but also to a lesser degree.

Now I'm looking forward to playing every week again and I have something to motivate me through the expected side-effects of the medication I'll be starting on Monday.

Monday, August 20, 2007

class for my medication

The prescription I have for my MS medication, Rebif, works a bit different than usual. Not only is it astoundingly expensive (before insurance), but it requires that I become certified to use the injection kit. A nurse from MS Lifelines contacted me shortly after the pharmacy shipped my kit via fedex. It was shipped overnight in a refrigerated carton (from Fall River of all places). She scheduled me for next Monday for my training class, I expect to start the medication at that time as well.

She is trying to track down the "Rebiject" self-administration kit for me during the week. This web site also states there is a Titration Kit available, I'm supposed to take a gradually increasing dosage, as stated on my prescription on the box, but don't have a kit. I'll have to call their support staff and request the Injector, Titration Kit and Travel Kit.

I hope it all goes well, taking an injection will have to become routine, and managing the side-effects will be yet another challenge.

Thursday, August 16, 2007

Played indoor soccer tonite

Am driving back home after stopping for dinner.

I felt good, I would say about 80% back to normal. There was still some spasticity in my right leg, the numbness in my toes was there, but it didn't get worse like I had worried it might. All in all I was very, very happy with my first game back. It was night and day compared to my play before steroids. I couldn't keep my balance, I couldn't pass, dribble, or shoot, and the worst part is that my brain knew my body wasn't right -- it's hard to explain how it feels to just have your body not responding like normal, how your mind envisions it just before a shot, or a pass.

From a technical perspective, it wasn't my best game, my shot was off, I think it had a bit to do with the tightness in my legs and the general change in muscle tone that I've experienced. Formerly, my leg muscles have been tightly coiled and wiry, now the tone is more relaxed, even my calf muscles aren't as tight as normal. Perhaps that's a good thing, but for now, it is hard to get used to.

I'm looking forward to starting up with a physical therapist who is experienced in treating MS, hopefully someone who can understand my condition and how I'd like to develop more strength and flexibility -- well, who wouldn't, but I think it's an important step to getting back to normal.

Let's see, I had 3 assists or so, I had maybe one or two decent shots on net, and about 4 that I just completely mis-hit. Normally I would expect to convert 2-3 of the chances I had, and mis-hit maybe a couple less. I can't complain though, I was nervous going into the game about how I would feel, and my body didn't let me down this time. It felt almost as natural as usual, and the fatigue was good fatigue. I'll sleep well tonite and enjoy the satisfaction of a successful comeback!

Tuesday, August 14, 2007

more early signs of ms that i missed

I think I've written about this before, but perhaps not. In trying to flesh out my diagnosis I've been trying to recall certain symptoms I've had before, that went away. I had thought of one instance early, and another just a minute ago.

First, when I saw my PCP originally about the numbness in my legs, he had in his notes, another instance of me calling in with numbness in just one of my legs. Interestingly, he had also noted that I was complaining of numb feelings in my chest and face. These relieved themselves on their own.

Secondly, and this is one I just though of, I had a nystagmus in one of my eyes a few years back. This prompted me to see the eye doctor and get a pair of glasses (which I never wear). We had thought that perhaps I was overtired, not all that impossible since I believe Tyler was only a year old.

Both cases resolved on their own.

So, maybe I do have Relapsing-Remitting MS. That is certainly the bracket I want to be in.

Monday, August 13, 2007

Nueurologist visit

This was my first real MS-specific appointment with my neurologist. The main objective would be to discuss medications and get me queued up to start one. As expected, we determined that Rebif was the best choice based on effectiveness. Though, statistcally the differences in effectiveness are minimal. That said, I was expecting to make this choice based on my research. I can just hope now that the month or so of expected flu-like symptoms isn't too bad, and that my body reacts favorably as far as liver and other side effects that might prohibit me from taking the interferon-based medications over the long term. (was thata runon sentence? i think mrs. b. would deduct points on it!)

So starting phase two: medication; on or around August 30th, when I'm scheduled to meet with an MS nurse to get instruction for Kris and I on the thrice per week injection. I was really down a bit before the meeting with my neurologist, but it went smoothly. She did mention, that being a male, my outlook is not expected to be as good as for a female, but there is no use dwelling on it, I'll take the medication as directed and hope for the best.

some frustration is bubbling

As I read more and more of the literature I've become a little apprehensive. My symptoms might be a little more severe than most patients with MS, I'll have to talk to my neurologist about this. I've been reading this article on MS by the National Institute of Neurological Disorders and Stroke.

It says that complete or partial remission occurs in 70 percent of MS patients. I still have parasthesias in my legs and back, some pain in my toes and I still have bladder problems... None of the improvements happened on their own either, it took massive steroids. It's possible I had had an attack years earlier though, and remitted completely, I'll talk about this with my Dr. as well.

It's only been ten days since I finished my steroid infusion, maybe my body is still recovering. I should have a better idea this afternoon.

Saturday, August 11, 2007

Symptoms better, here they are

Wanted to take a moment to jot down my symptoms after spending lots of time with boy monster and mowing (half) the lawn:

.. Some spasticity in both legs, mostly right quad - 3/6
.. Some pins & needles in both feet, toes are sore - 4/7
.. Numb skin both upper legs and lower back, maybe abdomen - 3/6
.. Headache 4

The headache just hasn't really gone away without the (addictive) fericet. The numbers represent my take on how they feel now vs. Before steroids.

The most promising is absence of fatigue and the really bad balance and coordination. I don't miss that... I have yet to test myself with the 'eyes up walk on a straight line' test that I really struggled with. And I haven't tried striking a ball yet. One thing at a time.

Friday, August 10, 2007

back to life

Having this full weekend to recover from vacation, and get settled at home is going to be helpful. It will help to focus on normal routines during the weekend while getting ready for the biggest change in 'routine' in my life.

I'll have to take some sort of medication indefinitely for my MS. For starters it will be one of four periodic injections. From daily to a few times a week. My thought is we will start of Rebif which is a 3x weekly injection. That's easier than daily, but worse than weekly :) I'm such a genius!

Going to spend some time going through research, I should have some sort of idea what to expect from the different treatment programs but I'm very hesitant to start digging into the MS forums because I am certain to run into activists for each, and horror stories for each.

But here goes... I'm joining thisisms.com and will start reading what people are saying.

Thursday, August 9, 2007

Questions for my neurologist

Here's the static document.

Nightmares about needles

I spent the day reading material from pharmaceuticals about the four main treatment options for MS.

Rebif
Copaxone
Betaseron
Avonex

But it gave me nightmares all night and I didn't sleep - bummer.

Wednesday, August 8, 2007

Lobster makes me feel better

And the steroids I'm sure have had a lot to do with it. I enjoyed my busiest day and feel worn-out in the good 'old way. Running on the beach, chasing Tyler, swimming, throwing Tyler in the water, tossin him back and forth with Kris. It was truly a great day. Although my toes cling to a certain numbness I feel better every day. I'm looking forward to starting the treatment so I can continue along this path.

Tuesday, August 7, 2007

finished eeg tests

reminder to self to figure out the names of the three tests.

Ok, here is the information I was looking for on the tests. They are termed, 'Evoked potential tests'.

I have MS

My neurologist told me today that I had MS.

Next.

Monday, August 6, 2007

Just another day at the beach

Even though I'm still battling some steroid side-effects, namely painful itchy knuckles in the morning, and some pain in my toes -- I feel pretty good.

I've gotten a few headaches and taken my headache medicine, and I am taking the Ativan every 6 hours or so, since I'm still on Prednizone and it makes me a bit jumpy.

Hoping to get a good night sleep and that the 'bladder' symptomps of my steroids start to wear off and let me sleep more than two hours straight.

Sunday, August 5, 2007

Starting new blog dedicated to research

Just for me to keep track of things that I can't finish reading or need background material on. Particularly at this point, determing my diagnosis is the clear objective. But I'm not shy about saying that it is MS, however, I have always said, "there are several varieties of MS that are described in the literature... I don't know which one I might have". My first objective is to try to figure that out by at least linking those articles.

MS Research

Chilling at the Cape House

For the first time really. I'm upstairs, figuring out some blog things, learning how to publish pictures from my cameraphone directly to my vacation blog.

http://forestonet.blogspot.com

I feel OK as far as my symptoms, I'm logging those on a Google calendar which is private, I will keep it updated with my symptoms, severity etc for myself and my Dr.

I'm still feeling kinda funky due to the steroids, but sticking to the prescribed meds to make this all as easy as possible. Being able to enjoy going up and down the stairs and actually doing things has been such a positive experience that I'm having a hard time not thinking about things getting worse again.

Heck, one of the worst things this morning was that my toes started to hurt! I usually can't feel them! Going to enjoy lunch and then sit and finish Friday by Robert A. Heinlein.

Saturday, August 4, 2007

How do I feel today?

That's been a good question lately. The Steroid Infusion ended yesterday, and I started to taper with oral Prednizone this morning. I had a headache and took some of the mega-caffeine/acetomenaphine/butrol (sp?) dosage. I'm feeling OK so I coated my stomach with the Prilosec and popped all six Prednizone.

I'm hoping those don't change the way I'm feelin all that much because I feel pretty OK. I walked the whole yard, working with Tyler to water plants around the yard and it was nice. I don't think my normal fatigue hit me, but I do worry about hitting a wall so I'm going to take it slow from here on.

Kris and I are getting assorted tasks complete, such fun as paying bills, cleaning up cat barf and refilling food bowls... We expect to get on the road shortly, it will likely be a long road but I am planning on that. Hopefully by the time we leave Tyler will be ready for a nap, and we can take our time, grab some chow, relax and enjoy some music. Hopefully.

Friday, August 3, 2007

Steroids Day 5

Finally made it to Milford Hospital, it was a long drive. Tyler was struggling in back for the few hours it took to make it there, can't say I blame him. I was struggling with remnants of my gremlin dreams (they were trying to take out my IV last night!), and Kris was battling crazy Cape Cod drivers. We finally arrived, behind schedule, but safe.

The nurses hooked me up in a flash, and in no time I was juiced up on roids, had the IV removed for the last time (at least for this phase) and sent on my way with best wishes. I felt OK, a bit tired, and it was 105 degrees so I was just in the mood for a shower and a nap. Kris was able to get Tyler down so I showered and napped during his naptime.

Woke up feeling refreshed, but a little jittery from all the steroids, so I cooled off with an Ativan to balance myself for the rest of the evening. This juggling of meds and moods is challenging, daunting and foreign.

Going out to dinner tonite with all my friends so that is something to be really excited about!

Steroids day 4

This was a quick and easy infusion. Driving from the cape and back in the same day, I knew, would take it's toll though.

Did some work at the house while I had energy. Watered plants fed cats :).

Drove back to the cape and pushed myself a bit to see how I was feeling. It seemed like I had a bit more energy, I sat at the beach and read got wet up to my knees, no more since I had an IV still. I felt like I was pushing myself but I was restless.

We had a couple huge 4 lb. Steaks that needed cooking so I steped up to make them, it's something I like to do. The bricketts were a challenge since i'm used to gas. With some grilled onions I think they came out great!

Just before dinner though I had a coughing fit from swallowing water wrong and ha an instant, debilitating headache. I took 10 minutes before sitting for dinner with everyone, but I recovered. We hung out on the porch for a while talking and having a good time.

Everyone went to bed and I tried to follow suit. But I had recurring nightmares of gremlins messing with my IV line that prevented me from sleeping well, not to mention reminding me how doped up I was. Gremlins!

I should have remembered to take that Ativan but I was trying to steer clear of more drugs for a change.

Starting the drive back to Milford, it's crazy with boy-monster and traffic. But kris will get me there with sanity leftover.

Wednesday, August 1, 2007

Steroid Infusion Day 3 of 5

Today I was due for (another) new IV, a vial of blood to test my Potassium and Glucose levels from being on steroids. My veins were uncooperative again, the nurse couldn't get it into my right hand, so she warmed up my left and got the IV into my forearm. It's relatively comfortable there as it's stable and doesn't move when I do things with my arm. She pulled a vial of blood and then got the Steroid drip started up at full tilt.

My face was getting flushed but otherwise I felt pretty good. I learned at the end that my first vial wans't going to cut it, they needed to take another, so they came in and grabbed another vial from my fight inside elbow. Cool, stabbed three times when I was expecting one!

Headed home to rest a bit before getting up the strength to head back to the Cape where Tyler and the rest of my family are.

I wrote this as a Thank You to my wife. This hits us all hard, but she has to put it all together and keep Tyler happy and safe, myself happy and safe (and make sure I speak up for my own good), and keep our family informed. That's a lot to ask during this period, this doesn't sum up how grateful I am, maybe I need a Haiku eventually. But it's a start.

THANK YOU KRISTEN

First experience with steroid agitation

Boy that really made it a fun night last night. Instead of getting all ornery and feisty I turned into a brain-addled, overtired mess. I stayed up from 2-5am, couldn't concentrate on sleep, my arms itched, and my brain was running at a million miles an hour. I finally hit upon the cause at 4am. It was the steroids and caffeine finally taking their toll. I took an Ativan and opened up my book. By 5am I had finished the book and sleep came easy. This morning I took my regular Prilosec, breakfast and another Ativan to keep me stable. I'm already feeling a little anxious for my infusion and blood tests today, after the long day yesterday with caffeine injections and the littany of medications, I'm ready for some quiet.