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.
Whoa! It's 2011....
Okay, so my goal of updating more often has not happened. I really need to get back into the swing of things here but I have to admit, I've been a little unsure what to even talk about. I guess when I started I was so gung ho about this blog that now I am at a loss and some days it just seems that saying nothing is better than going on about something that is meaningless. Maybe not?
I can't believe that it's already the 25th of January. 2011 is going by quick already. So, where have I been and what have I been up to? Let's see. The last time I posted, I was in the hospital. Well, we were supposed to go to Salt Lake for Thanksgiving and that didn't happen....thanks to Mother Nature and all the SNOW we had (this is not a usual thing for us here in the Tri-Cities at Thanksgiving). It turned out good that we didn't go either because as you all know I have been struggling with this cold or whatever it is since the first part of October. Anyway, I ended up back in the hospital just after Thanksgiving. Fortunately it was not pneumonia this time but really, the only reason it didn't turn into pneumonia was because I had been on continuous antibiotics and steroids. In fact I was on antibiotics and steroids until just recently. This thing doesn't seem to want to go away!!!
Christmas went well. I was finally starting to feel better. We went to my parents house, spent time with my family and it was a nice, relaxing, quiet holiday. Unfortunately my sister was sick and so within about a day I was sick all over again. This cycle has felt like it would never end. I went back to my PCP and was told that I would probably fight this until the weather got better because with my lowered immune system there's just no getting away from this. I'm thinking to myself at the time, this really sucks seeing how careful I am and that I am the Queen of HAND SANITIZER! LOL Anyway, I was starting to think that this is all just a part of the immune system recovery process when a week ago last Friday I ended up back at the hospital. I have had this cough since October, bronchitis non-stop, pneumonia on one occasion and I won't even get started on how difficult it has been to breathe. My asthma was really on the fritz!
A week ago last Friday I was having problems breathing again so I ended up back at the hospital. This time I had a doctor who decided that I had been on antibiotics for long enough and that this was not the solution.....after all, I should be getting better. He did the typical chest x-ray and higher steroids as well as stronger nebulaizers so that I could breathe. After the x-ray showed no pneumonia and since I've obviously quit responding to antibiotics, he decided that maybe my lungs are not the real problem here, maybe it's something else. Thank you so much Dr. Hauke because I am FINALLY getting better thanks to his "let's think outside of the box" outlook. He decided to do a CT of my sinuses and what do you know? My sinuses were so swollen that it was no surprise at all that I couldn't breathe. He explained that he thinks that since my sinuses have been so swollen any post-nasal drip has settled in my lungs, also causing my cough. He gave me a nasal steroid and told me about these wonderful things known as Breathe-Right strips. Finally I am getting better! I still have a bit of a cough and the Breath-Right strips are not a permanent solution but they are helping and will work until my ENT in Seattle can come up with a better solution.
Speaking of Seattle. I go back to Seattle Thursday. I am seeing my Pulmonary doc and then of course my ENT but also will be getting my 14 month post-transplant immunizations. 14 month? Yep! I know, I am 16 months out but I was sick and in the hospital twice in November when they were due and then the local doctor's and health department could not get access to the immunizations I needed, so I had to make arrangements to go to Seattle. It has taken some time, I'm told because this has become such an issue they have had to open an immunization clinic at the Seattle Cancer Care Alliance. Small areas, like where I live, don't have the inactivated immunizations because there is not a high need for them and in years past they would go to waste because they would stock them and then some months have no need for them at all. I understand the whole cost-effectiveness thing so I'm fine with that, as long as I can get what I need. Anyway, so I'm about 2 months behind schedule on my immunizations but now that we have them figured out I will just go to Seattle to get them when they are due.
I hope that this finds all of you doing well, MS behaving itself and that the New Year has brought you only good things. Until next time......
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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).
MS Advocacy
MS Bloggers
MS Donations
MS Links
- Accelerated Cure Project for MS
- Allison Shaddy: MS & Your Feelings!
- Consortium of MS Centers
- Cure MS Now Research Fund
- Face of MS
- Heuga Center
- International MS Support Foundation
- Maureen Manley: Spirit in Motion
- Montel Williams MS Foundation
- MS Active Source
- MS Association of America
- MS Complementary & Alternative Medicine
- MS Foundation
- MS International Federation
- MSplus Foundation
- MS Watch
- National MS Society
- Race to Erase MS
- Rocky Mountain MS Center
- Top 10 Sources (I'm #3)
3 comments:
Hi Jaime,
Nice to see you back and blogging again! :) I am with you on the shot situation... my local doc has been great and is ordering them for me, but it will put me a couple of months behind schedule.
I hope you get past all of your immunizations soon and feel better too!
Good Luck and I'll be praying for you!
Wendy
Hey Jaime! My name is Linda Grace Cox and I have had MS since 1995. I did a test study also, Cytoxin, wasn't nearly as bad as yours. I have taken to blogging like so many MS survivors. My blog is http://msrelief.com. I'd love for you to visit me there. Also, www.fb.com/msrelief. I'd love to hear how you feel about the stem cell therapy. I'm creating a post for my blog as we speak. I found you in the National MS Journal.
Look forward to connecting with you,
Linda
Hi Jaime,
Thanks for sharing what is happening with you, you say you often do not know what to write, that you do not want to write just for the sake of it.
I used to worry too about what to write.
These days I just write about whatever comes into my mind, I write everyday and find its easier than writing every now and then.
Our blogs are our diaries, a record of our lives so never meaningless, really never meaningless.
Good to read the doctor who thought outside the box helped you, we need more people like that.
Sorry about my lack of visits.
Spike's, our dog, illness, quick death in nov/dec and being so ill jan/feb to march meant no visits
Since then I have been spending more time sitting in my wheelchair I have also not been visiting
I just passed by to say hello.
I hope you are doing well.
Love,
Herrad
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