Today is day +44!

I returned to physical therapy yesterday after a 2 month hiatus and the staff were amazed to see me walking without a walker or assistive device and one of the therapists said I had “pep in my step!”  I was interested to learn what my assessment would show in comparison to my last one.  My BERG score, which is a balance scale to determine fall risk, was 55 which is barely a fall risk! 41-56 is considered low fall risk.  I was in the low to mid 40s when I was evaluated before I forget the exact number.  What was also interesting is that when I started P/T in April my left leg was weaker but now it’s actually stronger!   I was able to balance on my left leg for 12 seconds and my right leg for 7 seconds both of which I could not have done for more than a second before this transplant!  Originally when I was first diagnosed in 2003 my right leg was weaker.  It’s interesting because Dr. Burt’s nurse said the more recent stuff should clear up and it appears it has!

The vertigo is still an issue and I still have some cognitive issues but they are improving- I’m not repeating myself as often my nurse friend says.  I’m also pretty tired and find myself taking naps in the afternoon.  I also still have spasticity with spasms in my left leg but they are lessening.  The chemo side effects are there…my skin is very dry and itchy on my face.  I’ve lost more eyelashes and my eyebrows have thinned more and look like they’re getting ready to jump off but I’m okay with that.  The hair on my head has started growing in a bit. None of the cosmetic stuff matters to me anymore.  I’m just grateful to be getting better!

My labs are good and all in the normal range which means I’m allowed to swim!  We have a pool here at my condo association so it’s considered private not public so it’s less risky.  I’ve also been walking more!  Last weekend I took an uber to Walgreens to pick up Rx and walked around the shops and walked home.  I was tired but it felt good.

I have 2 more courses I just started toward my MHA and I’ve been spending some time working with the National MS Society to get them on board with HSCT.  Tim Coetzee is the Chief Advocacy and Research Officer and he sounds like he’s getting on board.  I was happy to see him participate in a webinar which I also dialed into at the last quarter.  I look like a mess in my PJs last month but I figure it’s worth sharing because it does provide some good information.  It’s amazing when I check out the analytics of this blog people from over a dozen countries are reading it!

Next steps….I’m now on biweekly labs and starting another medication, an antibiotic bactrim, tomorrow that’s 3x a week. I’ll call to schedule my 6 month follow-up appointment in a couple months.  I’ll keep going with P/T as many sessions as my insurance will approve and work on getting stronger!

Thanks everyone for the love and support it means a lot to my family too that their friends have followed this journey!

Ellie

I can’t believe it’s been 2 weeks since I was discharged from Northwestern!

Week 2 has been about dealing with pain and keeping my temperature down, regaining a little energy, and staying germ free.

When our temps go above 100.4 it’s time to call the transplant nurse to see if an ER visit is necessary.

Earlier this week it was constantly fluctuating while the past couple nights it hasn’t elevated much progressively later in the evening.

The pain felt like bone pain early in the week but has wore off.  But my right arm from the PICC line hurt all the way up my arm pit, neck and shoulder.  My transplant nurse explained that since the PICC was in the vein for so long it will take time to go back to normal.  It still hurts a little putting on deoderant but it’s almost back to normal now!

I’ve a got a small mouth sore which is a chemo side effect….the ones on my tongue from last week cleared up with the Rx and I’m using Biotene mouthwash as a preventative measure.  For those of you still in the hospital reading this, take the mouthwash home with you an the little cups too.

I haven’t much appetite since the beginning of the month.  I supplement with protein drinks.  I’m okay with that though as this past year I gained quite a bit of weight with all of the steroids both pills and infusions.  Nice to see it coming off finally.

The worst symptom is really fatigue…..but honestly all of these side effects are better than living with MS everyday.  The disease is on it’s way out of my body and it knows it and it’s fighting.

My blood tests this week were good, my hemoglobin is still low, some other stuff too but my transplant nurse said I’m where I should be and my numbers will climb back up to where they are supposed to be.

Today dad took me to see my neurologist for a check up and so I could get my Rx for Ritalin because I’m sooooo tired and he won’t mail it.  Ritalin requires a hard copy script so it’s not like he can call it in, etc.  He suggested I check out the medical cannabis card as it may be able to replace most if not all of my medications.  I love the idea of not having to take any more chemicals than I need to so I will look into it.  But I’ve never been a smoker so I’ll be taking it in gummy bears or something.  🙂

I also did my own manicure for the first time in a long time!  I did some research online for chemo safe products and found Zoya which is a nice line.  I also ordered a foot spa from walmart.com and some sterilizing tablets for it so next I’ll try giving myself a pedicure!

Also, as a reminder to those of you going through this process, you need to throw out your makeup and get new stuff.  Can’t take a chance of microbes making you sick.  Plus if you saw the episode when Tyra Banks had her talkshow looking at old makeup under the microscope it’s just gross!  The other thing I did this week was take my makeup tools and sterilize them by giving them a bath in alcohol…tweezers, eyelash curlers, toenail clippers, etc.

My focus now is to wrap up the 2 online courses I’m taking as I’m running out of time!  i only have a week and a half to complete them.

Thanks everyone for the emails, facebook love, calls and visits!

Ellie