Day +729 – My 2 Year Post

Hello Everyone,

I haven’t posted much on this blog because I am busy living the life I that I was so blessed to be given back thanks to HSCT.   I am doing well,  I feel like I’ve been sick since Christmas, but well.  I am always caught with so much emotion when I update my blog because I remember everyone that helped and continues to help me over this life obstacle.   I am in awe of the love that has been sent my way and will do my best to be deserving of it.   I haven’t had my 2 year checkup yet (tomorrow),  but I have been traveling the world and raising my daughter both of which would have been so difficult without Dr Burt and my wonderful Neurologist Dr Gazda.  

I love spreading the word of this treatment for autoimmune diseases.  It makes me feel like I am doing the work I should be.   Helping those of us that have felt hopeless because of our disease.  There is hope and I am living proof!

Xoxo 

Colleen

Day +578   Blessed Beyond Words

13 years ago,  I was working at an Auto Auction as a Credit Manager when a dear friend sent me a note telling me I had to come work with her.  I was not unhappy at my job,  but I knew I wouldn’t be there forever.  I took the chance and applied.   Little did I know that the move I made would alter my life in such a wonderful way.

I started working at a medical device company called Becton Dickinson (BD) when I was in my late 20’s.  Quickly on, I realized that I was a part of something bigger then me. I was a part of a company that helped people and I loved that!  I still love that.  I just never thought I would benefit from the devices we make.   I thank God every day that I have.

Last May, I was so blessed to be one of the 7 out of 45,000 people awarded the BD Life-changer award. The best part of the award is that I was nominated by 4 women that I admire and love. The award is given to an associate (or 7) who have shown to help people inside and outside of work. Cecilia, Dahlia, Gail and Phyllis. I can never thank you enough for not only nominating me, but for being the kind of women who support other women. I can never lose in life when I am surrounded by you. I am so proud to not only call you my coworkers, but to gratefully call you my friends. I love you guys!

I still am speechless.  If you know me,  you know that I am an open book.  When I was faced with the news that I had multiple sclerosis,  I left the doctors office and returned to work.  I still think it is funny that people think this is odd when people are surprised by this.  My coworkers are some of the most wonderful people I know.  It never crossed my mind once to hide the fact that I had this disease.  I was never ever concerned that it could impact my job or hold me back from growing my career.  I trusted my amazing leadership and knew that I would be treated with nothing less then full support. I never thought I would be honored for this and many months later i continued to be blessed. This week,  we were brought to NYC to be honored by our leadership staff.  That felt wonderful,  yet strange,  because  truthfully,  I am the one whose life has changed because of the products BD makes,  the people I work with and the wonderful doctors at NWM.

Now enough about my life!  Let me give you an update on my MS 18 months post HSCT:

I’m doing Great now,  I’m not free of ms so I am not a normal person (I never was), but I am a thousand times better.  When I get sick or exhausted (which happens more then I’d like to admit)  I remember why I went through HSCT.   I used to be like this all the time.   I have been traveling again and I learned to tag a day on here or there to recover  because I will need to.   It is all a matter of balance.  This is where I have been spending my energy. Trying to tell my brain that my body is not quite as young as it used to be.  We should all be so blessed to have this problem.

Thanks again to all my followers.  I don’t update as much as I used to because of work and home commitments,  but I still hand out my HSCT cards and continue to champion the amazing work of Dr Burt and Dr Gazda (inSan Antonio).   I believe it is my responsibility to help those who aren’t as familiar with stem cells and the analytics that make it possible.   I cherish every email or call I get from my fellow brothers and sisters with autoimmune diseases.   I am astonished to say that this blog has been viewed over 30,000 times from people all over the world.    If one person has found the courage to swallow your fear and go through with the procedure,  my dreams have been answered.

Many Thanks and please tell cause the typos.  I am writing this on a cell phone. 😂

xoxo

Colleen

remissiontocure@aol.com

Day 366 – One Year Later, I’m in Remission

 Wow,  it’s been a year.   I really can’t believe it.  It went so fast.  

         

  
  
About 2 weeks ago I went for my year checkup in Chicago.  Both Doctors were thrilled with my progress and said I still have a while before all the results are seen,  by my EDDS Score went to a 2!  A 2!  For those who don’t know all he medical mumbo jumbo, that is basically the level of disability I have and a 2 is awesome.  Dr Burt thought I may be on the cusp of professing to a higher level of MS and if that happened,  a transplant may not  have worked as well as he likes to see.  But,  my MRI showed no new lesions! So this has been a very successful path for me to take and I don’t regret it for even one moment.  it is so hard. No one can really get that unless you are in our shoes,  but it is hard.  

With all that good news,  I will confess that i am a little down today. I don’t know if I am disappointed in myself for getting so sick this year and having set back after set back.  I don’t know if it is my return to work after my latest leave and finding it hard to function as I should from the fatigue that found its way into my life when I got pneumonia.   Whatever it is,   I continue to count my blessings and accept  the fact that on this glorious day It is ok to feel a bit emotional.  

 I am so very blessed to have been a part of this amazing journey.   Getting diagnosed with this disease,  I never once doubted once I would find a way to live with it and live to the fullest.  What I didn’t expect,  was to find a legion of friends and supporters along the way.  Everyone around the world who read my blog,  call,  email,  Facebook me.   You have all helped me more then you can imagine.   I owe my recovery to you and to the legions of friends and family that were by my side… Or taking care of Rosie when I was in the hospital or too sick to do so.  For that,  I will be eternally grateful!   

    
     

    
    
   

 
xoxo
Colleen

PS – I type this as I am at my hemotologists office.   Looks like I have iron issues and my body is not absorbing it correctly.  I will return in a few days for an infusion.  He promises this will help tremendously.  

Day 326 – The Least Fun Rollercoaster iHave Ever Been Blessed To Ride

It’s been a while friends.   There is a reason for that.  The reason, it’s hard to blog when you feel like I have felt.   It has been a pretty rough 2016 physically for me.   If there is a sickness, I have gotten it.

January & February – pneumonia

February – Flu A, stomach bug and as of today a pretty nasty kidney infection. 

When I get sick. My MS flares and this week MS is winning the fight.  Luckily for me, I know I will win the war.

First of all, let me get this out of the way for all of you considering HSCT… NO, I do not regret it at all.  I am so blessed.  It is hard! If you are worried about being bald, the risk, if it will work or the recovery… You have valid concerns, but with MS and going through countless treatments,  it’s the far greater of an option then the alternatives. But, it is hard.   These days I feel like I live on medication and sleep.  I get a glimpse of what my life would be like every day each time the existing ms symptoms flood back when I am sick.  And I continue to thank God and Dr Burt that this won’t be my future.  In a few weeks, I go to Chicago to find out if  I am officially in remission.  I pray each day for good news and hope to God my immune system will start beating these illnesses off so I can start to see what it is like to be me and not me with this nasty disease.

Xoxo

 Colleen 

Day +291 – My Body Still Has To Catch Up with my Brain

The I still can’t get over that my blog has been viewed over 30,000 time.  I count my blessings everyday for all of you who love, support and pray for me.  That is the true miracle of this whole process.  I write this post as Rosie and I are flying to Philadelphia to see 2 of my besties. It is the first time I have flown alone since HSCT and it has been much easier then I remember pre-HSCT.  However, we checked bags and got dropped off, so it is basically sitting.  Lol  So, in honor of my travels to snowmageddon, I give you my latest symptom status!

MS Improvements – I am not the best person to sit and recognize all the improvements I have had.  I think I block out stuff and easily forget the pain and suffering I had on a daily basis.  Not that it is gone, but it has improved so much.

  1. Eye pain from optic neuritis – probably my worst MS symptom.  My largest lesion is only optic nerve, so it was the thing that I suffered with the most.   I know it sounds odd to think how bad can an eye hurt.   Unless you want to stick a stick through the back of your eyeball… Be glad you don’t know that answer.    I had this weekly and sometimes daily.  I would max out on any pills I could to try and touch the pain.  At one point, Dr Burt thought I may have another autoimmune disease NMO because of this, but I didn’t.   As of today, I have had this pain 3 times since the transplant. This alone was worth the process for me.  
  2. Walking – for the most part, walking has been significantly improved.   I had to use a cane a bit over thanksgiving because we were away and the walking and standing was too much on me,  but the leg pain, foot drop and numbness are almost non-existent. Walking using 
  3. MS Hug – this is a symptom I have yet to see any improvement in.  It still happens and it still hurts, but since I went into HSCT looking only to prevent progression.  I am still doing very well!
  4. Numbness – while not gone,  my numbness has improved quite a bit.   I still have issues holding things at time and fearing they will drop, but I have a long way to go before all the effects of the HSCT are shown so I still hold out hope.
  5. Hearing – this is how my MS was discovered.  I lost the hearing in my left ear.   This isn’t a frequent symptom, but it is an annoying one and one that still shows its head from time to time.
  6. Fatigue – unfortunately, I still suffer from sometimes severe fatigue.  I am however anemic and am having thyroid issues, so I still have hope.
  7. Arm pain and numbness –This is one of those symptoms that I didn’t know was MS related until it went away.  When I am tired, stressed or sick and it comes back…., i get a quick reminder of how amazing HSCT is.
  8. Speech  My cognitive issues have i proved quite a bit, but I still struggle with words or slurring now and then.  This symptom was getting progressively worse quickly, so I am so very thankful for the improvement and much more the  stopped progression of this symptom.  

I’m sure there are more symptoms, but the were some of my worst.  As for me post HSCT, I continue to recover and continue to repeat mistakes by overdoing it.  I spoke to my doctors this week and they (yes more then one of them) want me to slow down and focus on recovering, so I am going to do that. As most of you know, my recovery has been a bit complicated (not overly).  I had shingles, strep throat, countless colds, I’m anemic and my thyroid is out of whack.   All of these things and a very fast paced work life mixed with the need to pull my weight and be a mom to my daughter is adding difficulty to my recovery.  I live my life in a constant state of exhaustion and guilt for not being all I should be for my parents, Fran, my work and most of all Rosie.     I get that the guilt is stupid and my body and mind have been through quite an ordeal, but it is also something that is natural and others will go through, so I need to share the truth here. This procedure is not just physical, but mentally draining.   That is why physiological clearance is required…. I know, I can’t believe I passed either.   Lol

Besides… At least I am not Max the cat.   He is the one who has it really bad.  Lol  

 All my love to those of you in process, thinking about HSCT, suffering with any disease or just simply reading this.

Xoxo,
Colleen
PS –  I can’t believe I am flying somewhere a blizzard is hitting.  Lol. But I truly believe that good can be found in any situatio if you look hard enough.  In this case, I couldn’t think of a better crew to be snowed in with!!!

+251 – Holiday Blues and Reflections of Happiness

I love Christmas.   Almost everything about it.   I start planning out the month of December well in advance, shopping is usually done by Thanksgiving and cookies are baking all hours of the day.  This year is different.  I’m not sure why.  We still baked the cookies, but  I am skipping Christmas cards and I barely finished shopping. I think it’s the post HSCT blues.  Lately, I have started to gain functionality long lost, yet are still recovering from the cold that knocked me down for the count and that my immune system crushed!  The clash of the 2 just threw me into a cycle of chaos.  I feel like I struggle wide raging headaches daily and bone aches that make me want to soak in a hot bath 20 times a day. I’m blessed, I NEVER forget that, but with a life like the one I have had, I am always on edge waiting for the next challenge life is going to toss at me.   I think that is part of the blues for me.   I’m happy, that terrifies me. I am surrounded by family and friends that I love with all my heart. It terrifies me because with happiness comes the chance of devistation.    

  
 I was happy at 25 ready to wed the love of my life when I heard his voice cut out of the phone and we lost him forever… For what? Because he was an American who worked at the wrong place at the wrong time.  They both were, Jason and his father.  Life as I knew, as we all did…ended when I was 25 years old on 9/11/2001.  That moment in time…. However brief or long, I grew up in the worst possible way.  But I have lived with this for 14 years now. Why this, why now?   It could be the holidays, his birthday or the fact that I drempt of him looking at me in that way of undying love he used to show me when I least expected it.  That once in a lifetime look that I miss with every bone in my body every day of my life.  That is it, Thst look got me everytime.

When I lost Jason, I lost the children we would have shared together.  So at 30, I was 3 years into an adoption and my dream of becoming a mother was within my reach.   The process was not without its ups and very frightening downs, but we were close and the joy was overwhelming.  So was the grief when within days of seeing my daughters picture for the first time, my mother was diagnosed with esophageal cancer.  I can not begin to tell you what it is like to have the uncertainty of an international adoption compounded with the reality that my new worst nightmare was playing out in front of my eyes.   I thank God everyday that for  7 years now, I have been blessed to have both my mother and my daughter well and happy (dad and Fran too).  in those 7 years, I lost countless aunts, uncles, grandparents and friends. Life is not only short, it is hard. But I guess that is the risk we take by loving those around us.  

   
    
   
2 1/2 years ago,  I was faced with my next life challenge. My best friend in the world was diagnosed with acute myeloid luekemia.   My life stopped and I did all I could to be by her side in a hospital in Philadelphia as she fought for her life everyday.  Little did I know that 2 months later after an MRI for hearing loss, I would hear the words “you have multiple sclerosis” .   I would never cry (except in pain).  Why, because my life has taught me one thing and that is that like it or not, God wants me to be a fighter.   As Jen fought for her remission, I began to fights or mine.   Never once doubting it would be ok… That was until the countless failing medications, sight issues,  hearing loss and walking difficulties started to win the fight. That was until I was introduced to a genius in Chicago that will forever be my saving grace.  As I lay here, my best friend in the world lays in her bed hundreds of miles away, leukemia free, happily married and watching her children grow up.  Yes, we fought, but life taught us both that there was never any other option and that every moment God gives us on this earth should be cherished because you never know what challenges lie ahead.

     

    
   
The more I think about this fear I harbor about being happy, the more I realize that happiness is what you make of it,   Yes, I. Have been dealt some lemons,  but I have also used them to make some very delicious lemon meringue pies.  As does life have moments of incredible beauty, sadness can as well.   Sometimes I close my eyes and dream that Jason or his father holding our miracle child. The Vietnamese princess that can make almost any wrong right again. As heartbreaking as it is to know that that will never happen in this lifetime, my faith that it will In The next makes me smile again.  

With love and gratitude for everyone who reads, cares and prays for us, I thank you.

  
Xoxo

Colleen

Happy 40th in heaven my love