Not sure what day 3 of Chemo will bring, but the bathroom is my constant companion. Urinary urgency has whole new meaning. We’re all looking a bit weary. And those with family members don’t have much down time and still find the time to check in on me! It was a rough day for me. Not enough sleep and playing the role of a “Betsy Wetsy”, a childhood toy that would drink liquids and instantly pee.
Thoughts for the day: I was 100% sure that I was ready and convinced to commit to going to Moscow and receiving HSCT under the expert supervision of Dr. Fedorenko and was accepted for treatment on February 2, 2014. I had to spend many extra hours convincing some of my friends and family members that it was in my best interest to seek HSCT in Moscow. Just because there was nothing else offered to me in the United States, this was not a decision I jumped into lightly. I was sent numerous articles disclaiming the data that HSCT would be beneficial for PPMS. The most useful came from a friend in Australia who highlighted the important points for me to view. Thank you, Murray!!! That saved me hours and hours. I had already looked into every clinical trial in the US for PPMS. I felt that my research should have been enough. No one really understands how extremely difficult daily life is for me and for my family. Simple things take me at least 4 – 5 times as long as a healthy person. I trip, I fall, I bruise and I stopped counting how many things I drop every day. I am fortunate that I can still feed myself, shower and get dressed by myself, but these were luxuries soon to be taken from me by MS. I was so grateful that Dr. Fedorenko saved my date of arrival for me while I was attempting to elicit the support of family and friends. He is a firm believer that family support, good food, good mood and therapy will help with recovery. When I finally realized that I would never get the support, fundraising or daily living support that I was looking for from a few of my loved ones, I made my leap of faith that I would do the best with the little support that I had and booked my flights almost two months later than when I was ready. I was really hoping to get more fundraising help and that continues to be a challenge for me. Strangers, acquaintances, friends and family all donated numerous times. I was naively confident that I would be able to raise the money I needed before I left for Moscow.
As difficult as the treatment is here, every day life at home was dismal and I had very little help with daily tasks. I don’t know how I would have made it here without Adam’s help. He spoke to Dr. Fedorenko, George Goss, Brooke Slick, and helped me set up this blog and is continuing to fundraise with good friends from Bethany!
Thank you so much for helping him Kristen! Adam is doing all he can to try to stop me from worrying. The hospital has been very patient and knows I’m trying my best to raise funds to pay my bill. Everyone encourages me to stop fundraising and get more rest. Current patients undergoing treatment, former patients and future patients have made donations.
Everyone who is considering HSCT – do your research. Decide what is best for you and get on a list ASAP. Please don’t wait for support that may never come. It’s hurtful to be constantly be defending our decision, especially when time is not on our side and our disease keeps progressing. Gather your true friends and family who believe in you and would do anything for you, like you would do for them if the situation was reversed.
This whole process of research and fundraising took a great toll on my strength and daily exercise routine. Sitting and responding to numerous emails was detrimental to my health, stamina and endurance. Within a few short months, I progressed from walking wobbly to needing a rollator for most of the day. I know my recovery will be much more difficult with my current level of disability. I am ready for the work it will take to regain some quality of life that I have been missing for so long.
My world was small and getting smaller. I can’t do what I used to do. I really don’t ask for help for unnecessary help. You have no idea how difficult every movement is for me. I’m really not a lazy person, I just have to constantly balance movement and rest.
Friends have helped me with my few fundraisers, donated $, packed and sorted my household goods and even had a team effort to set up our new tiny kitchen! I am forever grateful to all of you for your prayers, donations, support and love. There is no way I can ever repay you for your trust in me that this is the best option to stop the progression of my disease. Sari drove 5 hours even when Jonathan was away for the weekend to help with the auction. Fred, Jonathan, Adam and Sari did the moving while I was ‘away.’ Jonathan just told me that the old house is nearly empty. Sari and Jonathan are still at it now!!!
I hope I can be more positive tomorrow!
Thank you so much for your continued love and prayers. I wish all of you would have known me as I was and not who I am currently. I still have my wicked sense of humor, although today there were extra tears. I look forward to being able to make Willie Franklin giggle at my inappropriate jokes : )