Don't Laugh. It's Not Funny. It's My Life.

I wish there were all kinds of great stories to share about my physical success post HSCT (bone marrow transplant), but it seems I'm in a holding pattern when it comes to walking (extremely weak hip flexors - I can walk only short distances without a break.).  This is basically my one and only multiple sclerosis (MS) symptom since my bladder frequency reversed (thanks to HSCT!!!).  Due to at least one symptom reversing, I consider HSCT a success and my disease halted! Ok, I still have bladder urgency sometimes (it's getting less and less with each month that passes post HSCT), but I will take sometimes over all the time.  I consider myself  very lucky to have had primary progressive multiple sclerosis (PPMS) for ten years (officially diagnosed seven years ago) and have been only affected significantly in one area.  This course of the disease is a disability nightmare for pretty much everyone.  As a reminder, there is a 78% chance HSCT will halt MS in its...

This was the second quarter of my recovery form the  Hematopoietic stem cell trans plantation (HSCT) I went through in October/November 2018.   As a reminder, HSCT is an intense chemotherapy treatment for multiple sclerosis (MS) . It aims to stop the damage MS  causes by wiping out and then regrowing your immune system using your stem cells. This was a bit of a rough quarter.  By rough, I mean my walking has been as bad as it was before I had  HSCT .  It is how it was for me pretty much all of 2018 .  I w alk like a drunk Frankenstein and often move like a shopping cart with a wonky wheel.  While it is frustrating and has caused about 10 falls, it did not stop me from doing everything I normally do.  Also, thanks to the graph below I am not worried about what happened over the last few months.  This graph gives a simple picture of the average recovery cycle from HSCT.  According to it, the past three months should have been ...

Today marks the 7-year anniversary of my multiple sclerosis diagnosis. What started out as “not being sooo bad” in 2012 turned into “omg, I have to stop this or it is going to ruin my life” in 2018. Hopefully, the HSCT (chemotherapy with a bone marrow/stem cell transplant) I had in October 2018 has stopped this. I tend to lean toward sharing positive accomplishments but I would be remiss if I did not share how progressive MS has affected my life. Here are the highlights... *I lost my ability to run and climb down stairs without holding a railing (I climb down them still holding a railing and moving very slowly) in 2012. *2014 was my last year of having what I would consider a “normal” walking gait. *August 2016 was the last time I went on a vacation where I didn’t need any assistance walking. *2017 and beyond walking any distance became an arduous task. I lost my ability to jump like I used to and at least a few other things. *In April of 2018 on a vacation tour wi...

The First Three Months Post HSCT (Chemotherapy and Stem Cell Transplant) at Clinica Ruiz in Monterrey Mexico If you are unfamiliar with what has been going on in my life prior to this post, please read the previous five entries on this blog to gain a full understanding of what I have and am going through.   Please note:   I am 43 years old.  I was diagnosed with multiple sclerosis in 2012.  I likely had it a few years before that.  My disease is progressive and started getting noticeably worse year-after-year starting around the end of 2014.  By worse, I mean my ability to walk kept declining and today, I cannot run, period, have trouble with jumping, walking down stairs, trouble with walking, and when pretty much trying any repetitive motion using my legs.  I can do it (except running) in small doses.  It just takes a bit of effort mentally and physically.  I worked out through my entire decline and modified as I was not able ...

Update not included in previous blog entry ... On October 23, 2018, six days after my second chemo treatment, I was able to walk better (no foot drag in either foot) and further than I had in two years (over a mile unassisted by Steven, my assistive device)!!! "2016 Dena" is back!  I did not want to say anything publicly until I had completed the treatment.  I hope there is more to come, but this is enough for me to consider this treatment extraordinary! Day -3 This day was the stem cell harvest.  My lower back has started to hurt from the filgrastim (promote stem cell production) shots, which I later found out was a good thing regarding my body's production of stem cells (lower back pain is a good sign or stem cell production). I have at least one "good"  and the rest "regular" veins, which allowed me to make a choice between having a picc line inserted (see pic below of a picc line) into my neck for stem cell harvesting or to do it through my v...

I mentioned I would blog with great detail, so you have been warned! Steven and I had lovely introduction to Monterrey including the fact that I'm in a penthouse apartment (see pics below) on what is the 13th floor labeled only as "PH"😜 .  Monterrey is not a touristy city.  It's a big city like Houston probably more so than Dallas. Monterrey Apartment: Monterrey Scenes from Mirador del Obispado: Me and My Nurse, Gaby Like Dallas and Houston, Monterrey has some fabulous restaurants!  The Clinica Ruiz staff in Monterrey is amazing!  They gave me and Steven excellent restaurant recommendations.  I was able to eat at two, La Caterina,  http://www.lacatarina.mx/  (grasshoppers, ants, and worms are on the menu - We tried the grasshoppers, which were pretty good.  Lots of other traditional Mexican food was on the menu. Don't worry!), and La Nacional,  http://www.lanacional.net/ , before Steven had to ...