Thursday, June 11, 2009

It Doesn't Have Me

I made an off hand remark on Twitter the other night and I was surprised at the amount of responses I had. That's when I realized that most people don't even know it about me.

I never talk about it. Hell, I rarely even think about it.

One reason is that I don't want pity. I don't want anyone to feel sorry for me. I don't waste time feeling sorry for myself. I'll be fine.

But, I said something along the lines of "Ticking off time before my son goes to bed. I have to give myself an injection. Would rather he not know I have MS."

Like I said, I just don't think much about it. But, I do know I want my children to be spared from knowing anything too soon. With them, it's more I don't want them to worry. Buddy knows I have a "condition", but we've never specifically talked about it.

I don't have any problems. I have an MRI every two years. In fact, I was at my neurologist office today for my twice yearly check up and my MRI will be scheduled soon.

They just look at my brain to see if there are more lesions or a change in activity. So far, there have been no changes since my base line.

I was diagnosed in 2000. Since then, I have been on once a day injectable med called Copaxone. It's a sub-cutaneous injection, which means it just goes right under the fat layer.

I have several injection sites that I rotate during the week and yes, I do my own injections. I don't mind.

The only times I have not done a daily injection in the last 9 years was the 39 weeks I was pregnant with Sissy.

Oh, no....During that time, I had to do TWO injections a day of Lovenox, which is a blood thinner (I also have a blood clotting disorder that makes me more likely to have a miscarriage and also a stroke - I'm taking a baby aspirin every day the rest of my life for that). But, during my pregnancy I had to do the 2 shots a day - just in my stomach.

I was black and blue - bruises you would not believe!

And, then after she was born, I did 6 weeks of one blood thinner shot a day post partum to make sure I didn't throw a blood clot.

While I was nursing her, I got a break from the Copaxone, so I had about a 3 month "needle free" zone in the last 9 years.

So far, I only experience some mild fatigue from the MS. I am a VERY lucky person! I was lucky enough to be diagnosed quickly and I'm lucky enough to be diagnosed in an era where there are many treatment options available (no cure yet, but treatable!). So, I count my blessings.

And, get ready for the next needle.


  1. wow- the things you learn on blogger- how i identify with the not wanting the kids to know- i didn't want them to see me sick but then i realized, i was sick alot and they didn't understand why.
    My kids have now grown up and fully understand my delicate condition/s but i fully respect your choice to keep your injections to yourself- big matters for little minds can often lead to fear xx

  2. Wise choice. Smooch for you, just cause I can.xx♥

  3. I remember being surprised way back when, because yeah, we'd never know. I can't imagine having to take shots every day, but it sounds like it keeps things under control.

  4. Great post!

    We did tell my son last year. I wanted him to know early so it wouldn't be scary since he sees that I'm healthy and it's just a name to him, like allergies or another ailment; it would just be something that was always there. We signed up for him to get the Kids MS newsletter from the Natl MS Society. He hasn't shown a great interest, and he knows I take medicine, but doesn't know it's a shot. The idea of a shot everyday would probably bother him more than the idea of MS. We talked about it a year ago, and I'm not sure it has come up since.

    I am very lucky, like you, and most of my fatigue is even gone! I get occasional bouts with numbness, but I'm generally very healthy.

    I don't make a point of telling people...My parents, hubby's parents, some of my coworkers and some of hubby's coworkers are the only ones who know.

    The main reason - I dislike the unwarranted sympathy. "I'm sorry", everyone says. I'm not sorry. After 3 MRIs, the last one being on my BRAIN, I was darn thankful it wasn't something a lot worse.

    My pastor has had MS for years, and having seen him live well with it helped me when I was diagnosed.

    Also - I haven't had an MRI since I was diagnosed (2006). My neuro prefers to just watch symptoms. It seems to be working.

  5. Ah, Evil Twin's Wife, I know of what you speak. My aunt has a very severe form of MS and she's living a vibrant, exciting life. If you don't let it have you, it's just an inconvenience.

    Thanks for sharing.

  6. I'm so glad everything is under control. Injections suck I'm sure, but you gotta do what you gotta do. I personally think that high quantities of boxed wine are a cure and after a while of watching you the doctors will figure it out! :-)

  7. You are such a strong person. You do what you have to do be stay well. I would imagine that I coud not give the injections to myself... but, if push comes to shove... I'm sure I'd put on my big girl panties and do what I needed to do, too. You're an inspiration!

  8. Before I met you I didn't know people could live normal healthy lives with MS.

    So not only are awesome but you're educational too :)

  9. I can understand you not telling the munchkins, nor wanting to tell anyone else. I hope I will handle any difficult cards I get dealt in life the way you are handling this.

    “When we long for life without difficulties, remind us that oaks grow strong in contrary winds and diamonds are made under pressure”
    - Peter Marshall (American TV game show host, b.1927)

    You are a diamond ETW!

  10. I admire you for being able to do the injections yourself. Seriously, I don't know that I could. I'm also glad that you're ok. Really glad.

  11. yeah, the kids don't really need to know all of that. Good Choice.

  12. My sister was diagnosed with MS in 2007. She has relapsing remitting form of MS. She only has to inject herself once a week though with Avonex. But, it's a long needle that has to get into the muscle in the thigh, which sucks.

    Like you though, she doesn't let her MS take over her life. That's one of the important things to do. Don't give in to it and don't let it stop you from living your life. Although obviously you can't just ignore it and stuff like that. But, you know what I mean. ;-)

  13. You are really lucky! My older sister has MS and Diabetes. It's really tough on her becuase they play off of each other. Unfortunatly, she can't drive any more and the MS has caused enough damage that she is unable to walk without a walker and she has complete numbness in her right leg. Despite the difficulties that she deals with she still amazes me every day. She is one of the most up bead and positive people I know. Nothing fazes her. She just treats life like a gift and I strive to be more like her every day!

  14. Every time I think I know all of the reasons why you are one of the most amazing woman I know, I learn another. You are awesome!

  15. The post title says it all.
    I love your attitude!
    No adjustments required.

  16. What you tell your kids is your choice. Of course things like illness and such should be discussed at an age-appropriate time. Heck, there were things about my mom's illness that we hid from my sister because she was at college and we didn't want her to worry.

    I am glad that you doing well with your condition. :-)

  17. Wow.. I didn't know that about you. I am glad that it is controllable!!

  18. So glad you're able to get by with few symptoms. You just never know what another person's going through.


  19. It's really hard to handle kids and chronic illness. I've always felt that I saw the exact moment that Will's life/future changed. We were in the hospital and he stood there watching Mom being wheeled up to ICU. At 12 yrs. old, you could see in his face that he understood that she might not come back. It still breaks my heart and I'll never forget the look on his face or that no matter what I did I couldn't erase it.

  20. Glad you have it under control, and I do remember you mentioning it on your blog at some point. I thought about you yesterday, in fact. My friend's wife has MS and she is pregnant with their first baby - she's about halfway through the pregnancy and doing well.

  21. Hooray for things that work! :)

  22. I'm sorry I had that reaction, it just surprised me a little. I'm glad you have it under control and you sound very very educated on the subject. I have total faith you'll be ok ! Thanks for sharing your story, I was worrying about you secretly.

  23. did they find it? Were you tired, are there symptons one should look for?

    I think it's a great decision to not tell your kids yet. One less thing they need to worry about or try to understand.

    I hope now you will keep us posted when your not feeling pitty parties here..just support!


  24. I just want to say that had I not already known it when I met you, I'd never have known. You appear to be the complete opposite of someone with any kind of "condition", let alone MS.

  25. Sweetie! I did not know this!

    I'm impressed with how amazing your attitude is! Surely, attitude makes a world of difference.

    You are fierce.

  26. What's MS?
    Militant Sloths?
    Mustard Sandwitches?
    Mutant Snakes?
    Malcontent Sophtmores?
    Manic Shitzus?
    Monster Squid-tenticles (like in those japanes movies that i watch all the time???!?!?!)



  27. love your attitude/approach ETW - you rock! :)

  28. And a good attitude like you have about it always helps keep it at bay too ;)

  29. Ya know...whether or not you have a disease, you can't let it define you, so no wonder you don't talk about it cuz it doesn't make you who you are. What makes you who you are is being a wonderful wife, mother, and a freaking CRACK UP blogger. I don't blame you for not talking about it cuz frankly you are doing well :) Keep those wonderful, positive spirits. that is one reason i love stopping by!

  30. I didn't realize that treatment options for MS had come so far. I guess you are lucky to have it now and not in earlier times---but still it shows admirable resolve that you can count your blessings and not curse fate.

  31. My daughter only knows of my illness because it's obvious (I tend to limp, can't walk some days).

    Like you, however, I will not allow her to watch me take a shot.

    "Progressive information" is a good thing, huh?

  32. thanks for sharing this with us:)

  33. I saw an MS comment somewhere along the way and had it stored in the back of my head that you had it. My dad was diagnosed a couple years ago and so far hasn't had any major complications. Glad to hear you are managing well and don't show many symptoms... although the daily shots do sound rough!

  34. Awesome attitude about all of that. I had no idea! Well, I'm glad you take very good care of yourself!

    BIG hugs to you!

  35. I just want to say
    I have always loved the taste of baby aspirin.
    Was one of the tweeters.
    I am still astounded by you.