This is MY journey with MS! I give you my thoughts, feelings, hopes, and prayers. My wish that one day this disease will come to an end. That one day there will be a cure. For now, I hold on to possibility. I HOPE this will help and inspire not only myself but others.
A VERY Long Trip
So my appointment with my neurologist was yesterday morning. When I got up in the morning I checked the pass reports just to make sure we were not going to have any problems. Forecast stated that there were no restrictions, possible 4-6 inches of snow, some slush on roadway. Well, this looks better than it did the day before I thought....so we should be just fine, right?
The trip over was just fine. We left a 7am just to make sure we would have plenty of time. The rain started just before we hit Ellensburg. The roads were good though. It was a bit slow across the top of Snoqualmie Pass as it was snowing and the road was slushy, but it was not bad at all. We followed the road report and it claimed the same was predicted. So we were not too worried, after all we were turning around and going right home after the appointment.
My appointment went well. She did the typical exam, watched me walk, and we talked about how I am doing with the Novantrone. I told her about how I felt I have had an increase in my overall level of energy. That there are still some days I don't have any energy but that it is definitely getting better and for me that is huge. I can deal with the other symptoms as long as I can get up in the morning and take care of the things I need to do during the day. For me the fatigue is one of the worse symptoms to have.....maybe not the most bothersome (pain, numbness sucks.....but they come and go for me). So, I am to continue with the Novantrone. Next dose is scheduled for January. She is going to send a letter to my Oncologist (as he is writing orders so that I can do the chemo at the local hospital) and he will follow me, do the blood work, and the echo over the winter and then I return to see her in May, just after my April dose.
Next we headed over to Pikes Place Market to pick up Nate's board. It is really cool. The top (where the grip is) has Nate written in this cool Asian graffiti. The bottom of the board is this green color with black along the edge. There is like paint drops of white and red all over the board and the middle has a Bruce Lee sketch and then other Asian characters and markings. Anyway, it is pretty cool. I think Nate will really like it. It is not exactly what I was thinking of when I ordered it....but I am sure Nate will love it. I did not even tell him that Nate was into Asian art....a few years ago he even took a class to learn to read and write Mandarin. :) While I was there I also picked up a candle as Dan's brother makes homemade candles. My dad just dropped me off, drove around the block and picked me back up.....so I was really only there maybe 5 minutes.
We then hit the road to go home and as we hit the North Bend area, we were able to access the road report. Unfortunately we found out we would not be able to go back the way we came. There were blizzard like conditions across the pass and they were considering closing it. At that time they were requiring traction tires and chains (and of course we did not have either....only all season radials, as we don't have snow problems in the Tri-Cities). So, we considered our options....we could wait and see if it would reopen or head south and take the LONG way around. Well, Nate stayed with a friend and there was no way to know if we would be able to get across so we decided to head south. We were hoping that maybe one of the other passes would be open. They were not. We ended up having to drive down to Portland and then across I-84 to Umatilla, get on I-82 and that takes us to the Tri-Cities. An extra 230 miles out of the way. It was almost 11pm when I got home last night. What a LONG trip that was. It rained all the way from Ellensburg on the way, snowed on the pass, and then rained again from North Bend until we hit The Dalles.
The trip itself was not that bad......what sucked is that about Olympia I started to develop the worst headache. I don't usually take Tylenol but that is all my dad had in the car, it did nothing to help. We stopped and I got some dark chocolate and a pop, that did not help. A little further down the road we stopped and I got a mocha. I never drink coffee but nothing was working and I was in severe pain. It felt like someone hit me several times over the head with a frying pan (or at least I imagine that is how it would feel to have someone do that). Nothing was working, I took off my glasses and closed me eyes. My left side was going numb as well. I thought this was just from sitting in the car for so long. Somewhere between Portland and The Dalles we stopped at the rest stop (it was dark, and by this time I was so sick I couldn't tell where we were). It was here that I realized this was a full-blown migraine. I couldn't get to the bathroom quick enough as I needed to throw up. I was so weak that I could barely walk without feeling like I would just fall over. This was not a fun trip home.
Eventually I was able to get some sleep and when I got home I went right to bed. This morning my left arm is still a bit numb and my legs are still week. My headache is still here but it is not as bad as it was last night (thank goodness). Today is the Veteran's Day parade and my wonderful father is out selling the CD for me, as I just can't seem to function all that well. Fortunately we have added more days to sell out at Wal-mart in Richland (the 20, 21, 25th for sure and they told us we can even have the 24th but we just have to get the okay from one person who was not there at the time). This would be great as the 24th is the biggest shopping day of the year.
Anyway, I am off to take a pill as my head is starting to hurt again. I hope all of you have a great weekend. Take care. :)
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About Me
- Jaime
- I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my story...my life with MS (among other things).
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6 comments:
Jamie, please take good care of yourself and pass along the greatest thanks of MSAA to your Dad who is simply fantastic helping with the Everybody Falls sales.
Malcolm Friend
MSAA.
"Next we headed over to Pikes Place Market to pick up Nate's board. It is really cool. The top (where the grip is) has Nate written in this cool Asian graffiti. The bottom of the board is this green color with black along the edge."
As a mom, YOU ROCK! You must get it from your Dad because it seems to me that he does a pretty good job at parenting as well. Give him a big hug for all the does for you ... Caretakers need taking care of sometimes too. All this after that damn migraine is gone, mkay?
What a journey! You must really like your doctor to travel so far and wide to see them! No wonder you got a migraine, and I hope it is now gone.
Malcom,
I have passed along the message. My dad reads my blog...so I let him know you were sending thanks and well wishes. We both appreciate it.
Jaime
Mdmhvonpa,
Thanks! The skateboard turned out really good...I will take a picutre and get it up here one of these days. Dan did a really good job.
You are right about my Dad. He is the best! I have been very blessed with wonderful parents who not only really love each other but both me, my sister, and my son. They have always been there to support us and they are great examples. I don't know what we would do without them. Family is everything for us.
I wholeheartedly agree that my dad deserves something BIG after all this. Not only has he been helping with me, but he had a stroke last year, has been working his butt off (literally...exercising) to get healthy, and has been an angel helping with my grandmother who lost her husband and was sick this past year. He really is a saint. I give him hugs all the time....he deserves a nice relaxing vacation. :)
Jaime
Mouse,
Unfortunately I don't think the migraine is going away anytime soon...it seems to be a bit better today though. I spent all day in the hospital yesterday and after 2 percocet and an injection (I think it was Dilantin...not sure) I just got dizzy and sick. The migraine got a bit better until I started to throw up...then it came back. I am just not having a fun time of it right now.
I do love my doctor. She is wonderful and for the most part it is SO worth it to drive that far to see her. Plus, I live in an area where there are only 2 neurologists and neither of them specialize in MS. I went to one of them and she felt I was too complicated to see (because I also have NHL) so she referred me on. Seattle or Spokane is the closest areas (Seattle being 3 1/2 hours and Spokane 3 hours..but the docs in Seattle are more specialized so that is where I go).
Usually the trips go off without any problems, this was just one of thoese freak things, I suppose. I must have been coming down with something (therefore jinxing myself) because I told her all about how I have been doing better...less headaches, less eye pain, more energy....but I was a bit worried cause I went numb on my left side on the way there and I had been doing better with that as well. So, here I have jinxed myself because as we headed home (about an hour out) I start this headache, quickly took some meds and nothing helped. Go figure, then we had to be rerouted and it turned into a migraine w/eye paid (so much for all that was going better). So long story short...I am now in full relapse and back on IVSM. Anyway, I am hoping to recover soon.
I hope that you are doing well. You continue to be in my thoughts and prayers. Please take care of yourself.
Jaime
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