Wednesday, November 19, 2008

Update From Mike

When I finally learned I had multiple sclerosis, it wasn’t a dramatic Hollywood moment (cue the ironic 90s song/montage) – it was just a standard conversation that happened to be taking place in one of the finest medical facilities in the country. My wife of seven years was there by my side, as she had been throughout. It was a long journey with no easy answers, a few wrong turns and a final destination in Rochester, Minnesota at The Mayo Clinic.

On our flight back to San Antonio, as reality began to set in, oddly I felt at peace with my diagnosis. For years, with no answers, I had become mentally and emotionally drained. Was I imagining my ailments? Complaining too much? Not tough enough? Did other people feel this way? Or worse – what was behind door #3, that doctors just hadn’t been able to solve, yet? But now I knew. And for all of the warts that come with having MS, it is who I am. It’s part of me and I’m not going to hide from it.

After returning home, I began reading anything I could find on MS. I’m still learning today and will be in perpetuity, which is one of my reasons for writing this journal. I’ll be devoting my future to increasing awareness and educating others about MS and it’s important for me to communicate with my family and friends towards this goal. I plan on writing more about the previously referred to “journey” from a bachelor pad in Arlington, Virginia in 1998 to 76 miles south of Minneapolis in May 2008 but for my first post I wanted to give you all an update on what has occurred over the past few months since my diagnosis.

The good news is - I’ve started treatment. The bad news is…I’ve started treatment. There is nothing graphic about what I’ll be writing about but for anyone that gets queasy at the thought of needles, you’ve been warned. :) About six weeks ago, I started taking Copaxone to treat my MS.

http://www.copaxone.com/FAQ/copaxFAQs.aspx

Why Copaxone? Well, in a nut shell – side effects. When evaluating the different options, my biggest worry about treatment was potential side effects having a large impact on my day to day life. I’m already dealing with the excitement that comes with having MS and I don’t need to add to the list of ailments. It is important to treat myself but I also need to be a husband, father, professional and more. Copaxone helps treat my MS and at the same time I avoid the normal side effects, including “flu-like symptoms”, or even worse, associated with other MS treatment options on the market. There are side effects but they are manageable.

What has been my biggest hurdle, mentally and physically with Copaxone, are the daily injections. Daily. I can’t say I’ve adjusted to it, not sure if I ever will. I doubt anyone views needles and injections favorably, but I’m pretty certain there weren’t many people that were as anti-needles as I was up until earlier this year. By the time my stay at The Mayo Clinic ended, though, I had gotten quite used to them.

Copaxone partners with a company called Shared Solutions (SS) and they have done a fantastic job helping me adjust to this new life. Once we decided to start on Copaxone, somebody from Shared Solutions called me a few days later to walk me through the details. Each month, I get a box shipped to our home containing a month’s supply of individually packaged needles of Copaxone. Within a few days that box had arrived and shortly after a nurse from SS made a house call to provide Angela and I a demonstration of how to give the injection, answer any questions we had, etc. Since it is a daily injection I need to continuously rotate the shot over seven areas on my body: both arms, legs, hips and my stomach. The key is shooting into a fleshy/fatty area. More fatty, the better – pain wise, at least. SS also provided something called an “auto-inject” that I use to inject myself. It’s a little gadget that holds the needle and does the actual injection for me. I just need to line it up and pull the trigger.


I’ve been on treatment for over five weeks now - some nights are better than others. I might get a solid sting from the needle or if I find a good fleshy area, I don’t really feel the needle at all. Whether I feel the needle, I always feel the medicine. It’s probably about a 5-10 second delay and the burning begins. Angela and I have a pretty good system; ice pack in hand, I lie down in the game room and we hit up the TIVO. Depending on the location, the burning can last for 5-15 minutes and then the area is just sore and irritable for awhile. For example, if I inject into my thigh then usually it is impossible to find a position where my leg isn’t hurting – so I shift positions a lot and manage the pain with the ice pack. Within 30-45 minutes I’m able to walk around again but the area of injection, whichever location I shoot, is sore and the soreness continues sometimes even into the next day. Because of this, I take the shots at night. It would be pretty difficult to take the shots in the morning and then head to work, so I take them at night after Vincent has gone down. I’ve yet to do my arms. I’m no Olympic athlete but with my arms it is near impossible to find a really good fleshy area. The nurse showed me how I could roll my arm on the back of a chair to create a fatty area – and we tried it. But, I just couldn’t do it. The nurse that came to my house had MS and she, too, never shoots into her arms. So, I rotate in the other five areas and each time I rotate to a different location in that area.

So far most of injections have been non-eventful, the best kind! When I do have a bad experience we make a note of it in the log so we know next time which area hurt, why and to remind ourselves to avoid that area in the future. One learning experience occurred when I shot into my left thigh – we went lower down on my leg than normal, just rotating the shots, and likely hit too much muscle. What followed was pretty miserable and I was pretty gun shy for a few days and still am whenever I inject into my leg. It was tough, but you learn quickly on which particular areas to avoid.

The first week or two was very difficult pulling the trigger, no matter where I was injecting. It was a mental hurdle for me. Part of it was overcoming self-infliction of pain and part accepting that this is daily…until science determines otherwise. Copaxone gave us a magnetic picture frame that we have up on our fridge. It says, “Why I take Copaxone” and in the frame is a picture of Vincent. And that’s my hurdle clearer. It goes without saying that I would do anything in the world for Vincent…so clearly, I can man up and take some shots.

I know this was pretty lengthy so my deepest gratitude if you actually made it through to this point! No worries, I won’t be writing novels in the future but the past few months have warranted a sizeable update. I mentioned previously that one of my next posts will be walking through how we got to this point – the symptoms, the doctors appointments, going to the emergency room while the Allard’s were in town - some great stories! :) But seriously, it’s important to me to share this with each of you. For most of y’all reading this, when I sent the note earlier this year about my MS it was probably the first you had learned of the journey we had been on and now that we have been able to get a lot of tough questions answered and know what we are facing, it is time to begin the next chapter of our lives.

Thank you all for your love and support and look forward to updating this real soon!

11 comments:

  1. Well said, Michael. And, I think that it is really a good idea that you are doing this for your family and friends, and who knows whom it might help.

    Chin up, shoulders back, and keep on truckin' ...

    Dad

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  2. Michael - Ted and I were just talking about you and your MS last night and wondering how you are doing. It is helpful to know what you are going through and how its affecting your life. I think having a photo of Vincent (and Angela) to remind you why the shots are worth it is a great idea. Glad to hear there was an option for you that minimized the number of side effects. Keep us posted. - Erin

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  3. Mike, thanks for sharing this. I know this has been a tough road for you. Powerful stuff about the picture of Vincent, man. Know we're thinking about you. -- Joe

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  4. I think that it is both brave and wonderful for you to chronical your journey and share it with us. We all love you and feel so much closer because you have included us in your fight. You know that family is stronger and greater than any other unit. The every day thing would get to me too. Hopefully eventually it will become routine. Keep us in the circle. We will keep you in our hearts. Kathy

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  5. Michael, you are in our hearts and our prayers. This blog and your mission to raise awareness will help all of us to understand. Keep focusing on Vincent and the sonogram that you've probably already added to the magnetic photo frame. You are the man; I scream like a twelve year old girl when I get a shot... and I have a lot more flesh on my stomach and legs.

    Adam

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  6. Michael:
    I wish you well. I will continue to read and pray for you and the rest of your family. Thank you for sharing this journey with us. I mentioned to your Mom that I have a friend from work that also has MS. I contribute to her walk annually. I will help you on your walk in March 2009 as well.
    Love, Your cousin...Gina (Ally's Mom)

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  7. Mike. I am sorry to hear you've been going through all this!! My thoughts and prayers are with you.
    Kristen Everett

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  8. Hello Michael,
    You don't know me. But I found your blog through the MS Society's post on FB. I read your most recent one, about your latest MRI. And then I clicked on your blog page and read your first post here.

    My 26 year old son has MS and has been on Copaxone for the past 3-1/2 years. He also chose Copaxone to avoid some of the side effects of the other drugs. He has always kept to himself about the discomforts of the shots. I know they have to hurt. But he is very closed about it.

    I have never understood why an MRI is so uncomfortable. All I was aware of was the need to stay still. Those sounds are just horrible. And now I get why my son detests them.

    Thank you for taking the time to post what these experiences are like for you. As a family member of someone with MS who cares and wants to "be there for him", it helps to know exactly what the inner and more personal conflicts are.

    I wish you all the best in your journey. And let's keep hoping a cure can soon be found.

    Gail

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    1. Thanks for your comment, Gail. Yes, I dread the annual MRI...won't be having my next one until August/September and I will continue to block out this reality until the moment has arrived :)

      My best to you and your son.

      Mike

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  9. Michael - Thank you for your blog. I hope my comment doesn't show up a lot of times. I have had trouble getting it all set up and so I keep starting over. :) Thank you for sharing your journey and for the information you have posted here regarding treatments. I went for a spinal tap yesterday, but my dr. believes I do have MS. I have had a lot of tests. MRI showed many lesions. VER normal. I will know more after the spinal tap results, I hope. Such an odd disease. Too bad there is not just a blood test that can detect it. Reading your blog has given me more information and the videos from YouTube you linked were good to watch, though difficult.

    May 2013 bring you some relief and many smiles with your beautiful family. Thank you again. Your blog has been very helpful to me.

    Brenda S

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    1. Brenda,

      Thanks for message and I'm hopeful you've finally gotten an answer after all of those tests. I remember my spinal tap like it was yesterday -- NOT fun! Hope you come back and visit soon.

      Mike

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