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.
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Note: Long Time Away = Long Post! :)

My goodness, how time flies by. I can't believe all that has happened over the last month or so since I last posted. I moved (which I mentioned in my last post), celebrated Justin's birthday, my father's 60th birthday! Justin moved in to my basement, I had my 4th dose of Novantrone, spent a week in the hospital....where I had my 31st birthday, Nate went to Boy Scout Camp for a week and attended the MS Society's kids camp, and now I am just trying to feel well enough to finish unpacking. Crazy!

First things first! I love my new place. As you can see from the pictures in my last post, my backyard is beautiful. My parents got me a lawnmower (as I now have yard work to do...or should I say Nate does, lol) and a BBQ for my birthday. My bedroom is on the main level, along with Nate's room, the living room, kitchen, and bathroom. So if I don't feel good, I don't HAVE to use stairs which is a great relief. Justin moved here from Idaho to help out and just in time apparently. He has the basement set up nicely with his room, living room, and an office area. The laundry room is also downstairs, but he promises to help with that as much as possible so that I don't have to use the stairs too often. :)

Like I mentioned above we have had some birthdays to celebrate. Nate spent a weekend on Bainbridge Island for the MS Society's kids camp. It was a great success and he not only learned more about MS but had a lot of fun. When we picked him up he was exhausted! Justin and I decided to stay the weekend in Seattle (as it made more since than commuting both Friday and Sunday) where we celebrated his birthday. We went on an Argosy lunch cruise which was awesome! The food was wonderful, scenery beautiful, and I can't remember the last time I was able to just go relax. The weekend was great. Then for his actual birthday we went to a Dustdevils baseball game, which happened to turn into the best game I have seen in a long time. Two days later was my dad's 60th birthday and what a day it was. Pretty much my dad's whole family came to celebrate with him. We had to have had 30 people or more show up. After the last couple years of his rocky health, we are just so excited to have him around and know his birthday is something big to celebrate. My birthday was last week. We have not really celebrated it yet as I spent all last week in the hospital. My timing could not be worse for these things apparently. Next year I really need to choose a better location, don't ya think? My family is planning a get together tonight, so that should be fun.

As I mentioned last week I spent all week in the hospital. Not fun at all. Friday (the 13th of all days) I suddenly felt as if I could not breathe. Like I was being suffocated or something. The big concern at the hospital was first my lungs and my heart, seeing how I have asthma, a history of pneumonia, and the chemo is cardiotoxic. They could not find anything so they put me on oxygen and breathing treatments and I was discharged. The next time it happened Monday morning around 5am we figured there was something more going on. My PCP thought I was having a PE (blood clot in the lung) so back to the hospital we went where I was admitted. The good news is that after several EKG's, an echo, spiral CT, stress test (which showed a false abnormal result and gave us all a scare), and a lungs are heart are just fine. It turns out that my MS is showing its ugly head in the form of major muscle spasms. Well, I have had muscle spams before but never anything like this. They determined I have been having muscle spams in the chest cavity which includes my heart, and that the spasms are in turn constricting around my lungs, making it difficult to breathe. Can I do anything easy with this illness? Apparently not! Anyway, I was finally discharged Saturday night and my Baclofen has been increased by about 4x the amount I was previously taking.

Fortunately it also happened to be the week that Nate was at Boy Scout Camp in Idaho. He had so much fun, got to learn to shoot off some guns (which being a boy is of course cool), earned his wilderness preparedness badge, as well as swimming, first aid, and some others. I am so glad that he was able to just go and be a kid and was not home for all of this. I hate it when he has to see me not doing well.

So, as you can see a lot has been going on, and for this reason I have been away for a while. I hope that all of you are doing well, that you had a great 4th of July and that your health is good. Please continue to keep in touch and I will be around as soon as I can to visit each of you. Take care of yourselves!



mdmhvonpa said...

Sounds like you had a bit of a rough run there ... hope all goes well from now on.


Glad to see you are back! And happy birthday to you as well...

Linda D. in Seattle

Stephen said...

sounds like mostly a happily busy time, except that week in the hospital. glad to see you back!

personallog! said...

Come back to us soon. I miss you.

Love n hugs

personallog! said...

Its October where are you baaabbbbyyyyyy.......!


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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 life with MS (among other things).

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