I shoot up on Monday's, Wednesday, and Friday's. The supposed side affects, I didn't have. That first week. The following Tuesday though . . . bad . . . Thursday, even worse. The drug company that makes Rebif has their own hotline/support network. Surprising to me, a nurse called at the end of the second week to check up on me. Some things are just to obvious. After discussing the recent onset of my flu like symptoms, the nurse suggested that I move my injection time up. "Why didn't I think of that. . ." came to mind.
Week 3 . . . up the dosage. . . 50%
That slight burning . . . ha. Hot poker right in the stomach. It wasn't that bad, but it was a little uncomfortable. A week afterward, there was still a bruise.
Since all of this is in the midst of the holiday season, there's tons of Christmas parties. For someone that could drink like a fish, it is certainly noticeable when said person isn't drinking at all. Side affect of interferon is the possibility of decreased liver function. I've had to adjust to that portion of my new life. I've done it before and under much tougher circumstances. Try staying sober for six months when your in a fraternity. Warm weather came and there is nothing better than a cold beer.
Anyway . . . people certainly notice.
30 December 2007
27 December 2007
I start my IV steroids on a Monday. Just like last time, sleep is hard to come by. This time, I have a little valium to help the process. I'm supposed to take 5mg three times a day. Whether it's my high metabolism or something else, the valium has no affect on me at all. So I stopped taking them. The IV treatment had an immediate affect, more so than the pills the last time. Was there to be light at the end of the tunnel??? Stay tuned.
The day after my last IV bag, I was on my way to visit my cousin who I haven't seen for 7 years. Throw in an aunt, uncle and grandparents and it was going to be a busy week for a vacation. Obviously, the question on everyones mind was the MS. I answered everything everyone asked except my own questions: What does it mean to have MS and not have presented with any symptoms? They myelitis is as close as I've come and it's just an annoyance that keeps me from doing what I used to do.
During my week of vacation, two months worth of Rebif arrived, an auto-injector, and travel case. Look what I have to look forward to when I get home. My week drifts quickly by and it's time to travel home to face my demons.
Arriving home and finding the syringes in the refrigerator and the gun brought everything into stark reality. Up until this point, MS was just something I talked about. My little insulated world didn't come crashing down, but it certainly was rocked. It's Thanksgiving week and I still have two more weeks of steroids to take. They myelitis isn't completely gone, but it's slowly going away.
December 3 . . . I started my injections. The drug company that makes Rebif contracts out and has a visiting nurse come in and illustrate how to inject, answer questions, things like that. Everything that was on the DVD that came with the messenger bag. After watching a friend inject himself with insulin, I think I can manage. It's part of the service, it's free, so I bring it on.
I follow the guide and decide to shoot up around 9:00 PM. It's a couple hours before I usually go to bed, so if I have any side affects, I should sleep through it. I've been pretty pragmatic about the whole shot thing. It's not like I have a choice, I just have to do it. After seeing the tiny needle, what's the big deal.
Instead of using the gun, for myself, I need to do it manually. Call it the cult of manliness or call it whatever you want. I also decided to start off on my stomach. Thinking you can do something is only half the battle, you actually have to do it. After grabbing what little fat I have, I took the cap off with my teeth and then held the needle over my injection site for about a minute and finally made the plunge.
The needle is so tiny that I had to actually double check and make sure it was in. The first two weeks of injections are only 20% of a normal dose. A little minor burning during the injection, I draw out the needle and there's not even a mark. A great first shot.
The day after my last IV bag, I was on my way to visit my cousin who I haven't seen for 7 years. Throw in an aunt, uncle and grandparents and it was going to be a busy week for a vacation. Obviously, the question on everyones mind was the MS. I answered everything everyone asked except my own questions: What does it mean to have MS and not have presented with any symptoms? They myelitis is as close as I've come and it's just an annoyance that keeps me from doing what I used to do.
During my week of vacation, two months worth of Rebif arrived, an auto-injector, and travel case. Look what I have to look forward to when I get home. My week drifts quickly by and it's time to travel home to face my demons.
Arriving home and finding the syringes in the refrigerator and the gun brought everything into stark reality. Up until this point, MS was just something I talked about. My little insulated world didn't come crashing down, but it certainly was rocked. It's Thanksgiving week and I still have two more weeks of steroids to take. They myelitis isn't completely gone, but it's slowly going away.
December 3 . . . I started my injections. The drug company that makes Rebif contracts out and has a visiting nurse come in and illustrate how to inject, answer questions, things like that. Everything that was on the DVD that came with the messenger bag. After watching a friend inject himself with insulin, I think I can manage. It's part of the service, it's free, so I bring it on.
I follow the guide and decide to shoot up around 9:00 PM. It's a couple hours before I usually go to bed, so if I have any side affects, I should sleep through it. I've been pretty pragmatic about the whole shot thing. It's not like I have a choice, I just have to do it. After seeing the tiny needle, what's the big deal.
Instead of using the gun, for myself, I need to do it manually. Call it the cult of manliness or call it whatever you want. I also decided to start off on my stomach. Thinking you can do something is only half the battle, you actually have to do it. After grabbing what little fat I have, I took the cap off with my teeth and then held the needle over my injection site for about a minute and finally made the plunge.
The needle is so tiny that I had to actually double check and make sure it was in. The first two weeks of injections are only 20% of a normal dose. A little minor burning during the injection, I draw out the needle and there's not even a mark. A great first shot.
26 December 2007
The Beginning
For those taking the time to read this, I thank you.
I was diagnosed with MS on 2 October 2007. However, my story is not like the usual ones. In August, I started out with a tingling that moved from rib cage down the rest of the left side of my body. I'm sure we can all relate to that. Strange, I said to myself. Suffering from a bad back for 15 years, I thought it was another curve it was throwing at me.
A pinched nerve. I'll lay off of my usual activities and it will just go away. It didn't and two weeks after it first started it, moved to my right foot and leg , got more pronounced and the vision in my right eye started doing strange things: bright lights and physical activity usually set it off. Something is seriously wrong.
Being an athelete, I had an orthopedist not a general practicioner. I knew I was going to need a referal. It took me two weeks to see my parents doctor since I was a new patient. Two weeks later, I get the examination and knew what I already knew: something is not right, let's get you to a neurologist. Miracle of all miracles, I got in to see one the same day.
After going through the the same tests and more detailed questions, preliminary diagnosis is transverse myelitis. I know what that is, it's a pain, but it can be treated. I'm scheduled for a contrast MRI on my mid and lower back in 5 days, come back in six weeks. In the meantime, I research myelitis and it's the first time I hear about MS being mentioned, so I research that too.
The next day after the MRI's the doctor's office calls and confirms the diagnosis: transverse myelitis in two areas. Great . . . put me on steroids and send me on my way. However, now the doctore wants me to have a head and neck MRI and see an opthomologist also. Another 5 days on the MRI and 7 for the opthomologist.
Filling out the paperwork at the hospital for the MRI, I see MS all over it. Things not looking all that great now. I spend about 30 minutes in the drum and out I go. Two days later, no word from the neurologist and I'm off to see about my eyes. Word from the opthomologist: myelitis affecting the vision but cornea, retina, and optic nerve all look healthy, come back in a year. One less thing to sweat, now just hear back on the MRI.
3 days go by, 4, 5, 6, 7 and finally the call. I heard "you show indications of MS" and then everything got fuzzy. The last MRI showed scar tissue in my head an neck. How old it was couldn't be determined and I may have never even noticed an episode. It's almost three weeks till my appointment. At that time, we'll talk about drug treatments and answer questions that I might have.
That was the longest day. I figured that I needed to break the news to my family and friends that day. Better to do it all at once rather than having to do it over and over again. The more I said it the easier it got. Although to this day, it's still not easy, but it is a matter of fact.
For close to the next three weeks, I research, I read and I finish the steroids. Which, after the second step down, everything came back. Finally, the day came to go back to the doctor. We have a nice and long conversation. I'm going back on an steroids, this time 5 days of IV's followed by 20 days of pills. For the MS . . . we agree to try Rebif. I am then given a canvas messenger bag that has a hard-bound, full color binder, a DVD and CD. Serious Stuff
More tomorrow . . .
I was diagnosed with MS on 2 October 2007. However, my story is not like the usual ones. In August, I started out with a tingling that moved from rib cage down the rest of the left side of my body. I'm sure we can all relate to that. Strange, I said to myself. Suffering from a bad back for 15 years, I thought it was another curve it was throwing at me.
A pinched nerve. I'll lay off of my usual activities and it will just go away. It didn't and two weeks after it first started it, moved to my right foot and leg , got more pronounced and the vision in my right eye started doing strange things: bright lights and physical activity usually set it off. Something is seriously wrong.
Being an athelete, I had an orthopedist not a general practicioner. I knew I was going to need a referal. It took me two weeks to see my parents doctor since I was a new patient. Two weeks later, I get the examination and knew what I already knew: something is not right, let's get you to a neurologist. Miracle of all miracles, I got in to see one the same day.
After going through the the same tests and more detailed questions, preliminary diagnosis is transverse myelitis. I know what that is, it's a pain, but it can be treated. I'm scheduled for a contrast MRI on my mid and lower back in 5 days, come back in six weeks. In the meantime, I research myelitis and it's the first time I hear about MS being mentioned, so I research that too.
The next day after the MRI's the doctor's office calls and confirms the diagnosis: transverse myelitis in two areas. Great . . . put me on steroids and send me on my way. However, now the doctore wants me to have a head and neck MRI and see an opthomologist also. Another 5 days on the MRI and 7 for the opthomologist.
Filling out the paperwork at the hospital for the MRI, I see MS all over it. Things not looking all that great now. I spend about 30 minutes in the drum and out I go. Two days later, no word from the neurologist and I'm off to see about my eyes. Word from the opthomologist: myelitis affecting the vision but cornea, retina, and optic nerve all look healthy, come back in a year. One less thing to sweat, now just hear back on the MRI.
3 days go by, 4, 5, 6, 7 and finally the call. I heard "you show indications of MS" and then everything got fuzzy. The last MRI showed scar tissue in my head an neck. How old it was couldn't be determined and I may have never even noticed an episode. It's almost three weeks till my appointment. At that time, we'll talk about drug treatments and answer questions that I might have.
That was the longest day. I figured that I needed to break the news to my family and friends that day. Better to do it all at once rather than having to do it over and over again. The more I said it the easier it got. Although to this day, it's still not easy, but it is a matter of fact.
For close to the next three weeks, I research, I read and I finish the steroids. Which, after the second step down, everything came back. Finally, the day came to go back to the doctor. We have a nice and long conversation. I'm going back on an steroids, this time 5 days of IV's followed by 20 days of pills. For the MS . . . we agree to try Rebif. I am then given a canvas messenger bag that has a hard-bound, full color binder, a DVD and CD. Serious Stuff
More tomorrow . . .
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