Today is a milestone as far as time until treatment goes. In just 100 days I will be getting on the plane headed to get disability saving and lifesaving treatment for MS. This last year has been a rough one. I have literally been relapsing every 2-3 months and then it takes weeks to recover. Thank God this last time I have recovered and I am feeling really good right now and enjoying these good days, such a blessing. I hope that I can make it until February without anymore relapses so that I have a chance to build up strength for treatment. I still don't have all the funds needed but we are getting closer and my tickets, hotel and visa are all paid for. I have faith this treatment will work for me and I will be in the 80% of success stories. However, if it does not work I will have the peace of mind knowing I tired and be able to show my children and husband that I did everything possible to beat this disease. The holidays are fast approaching but remember for anyone who would like to donate all donations made through Red Basket are tax deductible and greatly appreciated! I would have not gotten this far if not for the support of my wonderful family and friends.
Yesterday was a rough day on many levels. This time yesterday morning I was feeling very sad and defeated but Angels keep showing up when I need them! This morning I woke to find someone made an anonymous $5000 donation to my Red Basket campaign! I hope that no matter who this angel is that they know how much their generosity means to me. Yesterday's tears of sadness and frustration are today tears of gratitude and joy, I am continually blessed!
When I am following other patients journey through high dose chemotherapy to halt MS there is always one event that makes me cry. There is always a point in treatment when they can actually feel the weight (for lack of a better word) of the disease lift. Every one of them always says the same thing, "I forgot what it feels like to feel normal". I cry because I know that after 18 years I no longer remember what normal feels like either. I can't wait to again know what NORMAL feels like! I want to thank again all the friends and people who don't even know me who are supporting my dream of feeling normal once again.
I thought it was time for an update on my latest MS relapse.
This last relapse came in the form of optic neuritis in my left eye; I was
having pain, the color was going in that eye, vision was blurry, my pupil was
sluggish and was slower to react to light. Good news is that I believe all of
this has resolved thanks to the course of steroids the doctors prescribed. The
bad news is steroids are bad stuff, they literally make you feel crazy and at a
time when you should be resting, they make you feel like the Energizer Bunny
and you just cannot stop! I did not get more than 3 hours sleep every night I
was on the steroids and last weekend while still taking them I worked out in
the yard all weekend catching up on things that I had let slide for months
because the MS has been hitting me so hard. Fast forward, to the last, couple
of days and I have been off steroids and I am now experiencing “steroid crash”!
OMG, everything is hurting and I feel like I have the energy
of a newborn baby! Last night I told my husband to please not even talk to me I
just didn’t have the energy to think about what he was saying or listen. Five
top problems of the crash; irritability might as well called it downright
crankiness. I tell myself it is better
to isolate myself in my misery, than it is to risk hurting the ones I love
because I am in such a bad mood and so overly sensitive to sounds, smells and
noises. Weak and lethargic not only am I tired from not having the steroids, I could
care less as well. It is a strange emotional place to be, even when I must
perform a task, I am just doing it to get it out of the way so you can go back
to laying down and doing nothing but there is so much going on right now and so
much I need to take care of. Sleeping more this is a no-brainier; my body needs
to sleep to catch up on all the sleep I lost being totally wired from the steroids.
I am relieved to finally be sleeping again. I am amazed at the times I fall
asleep last night in bed 4 pm. Seems when I lay down with the intent on
sleeping, nothing happens, but when I think I'm just going to lay down to rest,
before I know it, I'm asleep. Dehydration, I cannot get enough to drink I am
constantly thirsty and my lips and mouth are dry and my lips are red and puffy.
Last but by far least, Depression/irrational thoughts run together in a very
strange way. The dark feelings of dread
and sadness can hit and then hang around for what seems forever. I know and I keep telling myself “this is
just temporary' 'things aren't that bad' 'I'll handle what comes with my health
as it comes' 'there is a reason I'm feeling so down - the steroids!'
Things will be better in a few weeks, until then I ask for
patience and understanding. I have to keep going I have too much to do and
accomplish to slow down to much.
I was a super skinny shy kid growing up and I rode the bus and went all through school with another skinny shy kid who was always into music. Who could have guessed back then that he would someday be a ROCK STAR! I may not have known where our paths would take us but I have always known you are one of the GOOD GUYS Rodney O'Quinn and someone who cares. I cannot thank you and the rest of Foghat for the generous donation to help me beat Multiple Sclerosis! Love you my friend! This guitar will be up for auction at the BBQ Benefit on Saturday, April 22nd.
On Saturday, April 22, 2017 there will be a BBQ to help Amanda get the treatment that she needs. There will also be Silent Auction, Raffles and Music; for more information, tickets or if you would like to donate for Auctions or Raffles please email email@example.com or call 321-698-1279.
My goal for HSCT is to stop my MS right where it is so I can go back to my young, adventurous lifestyle.
Can’t decide? Don’t worry – we’ve got you covered.
“With a service dog I will be independent, walk without fear of falling, and retrieve dropped items, especially the phone if I do fall.”