Day +729 – My 2 Year Post

~ Colleen ~ 2 Comments

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

~ Colleen ~ Leave a comment

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

~ Colleen ~ 1 Comment

 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

~ Colleen ~ 1 Comment

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

~ Colleen ~ 1 Comment

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

~ Colleen ~ 2 Comments

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 

Day +241  – My Rear View Mirror

~ Colleen ~ 2 Comments

It’s funny how time goes by and my body starts to heal, I began to forget the pain I used to live with every day.  It’s not that I am miraculously recovered.  I have and will always have MS, but the miracle I was blessed with did way more then I asked for.  I wanted to stop the profession of my disease.  I haven’t had any MRIs since the transplant, but I have faith that my 1 year follow up will show it did its thing.  However, when you have HSCT, you spend the first months of recovery worrying about different things.  Like getting sick, getting shingles, medication side effects, thyroid levels and much, much more.   I myself am a champion worrier. I was so concerned about getting back to work, being a mom and doing all the things I have not been able to do that I didn’t even notice.  I never noticed that for the first time in many years my feet were hot, then cold, then hot again…. My arms didn’t hurt and I haven’t had pins and needles every night.  I didn’t realize that the eye pain that dominated my life was suddenly gone. I never noticed the horrific spasticity in my back and neck become less and less common. A very dear friend and mentor used to tell me I spent too much time looking at the road ahead and not enough time looking in the rear view mirror.  I never noticed these changes and more because for 7 months, I was stuck looking at the mountain of recovery and treatment side effects in front of me and never took time to look in the rear view mirror.  While on vacation this week, I forced myself to look back and smiled thinking of how far I have come.  Now, I’m not saying I am in tip top condition.  I still get headaches, I still have foot drop at times, I am exhausted… a lot. But I do it to myself.  I don’t know how not to overdo it.  I want to do great at all things and I hate letting people down.  I know in doing this, I let myself down. I will try to work harder at this and now I’ll tell you why.

This week, we went on our first vacation since HSCT.  We went on a cruise for my mothers 70th birthday.  My brother, sister in law, nephews, and my sister in laws parents joined my parents and I.  Knowing the size of the ship, I rented a scooter.  I was determined to lay low. I did and we had a great time… Despite the fact that I barely left the boat for fear of getting sick and my nephew Connor sprained his knee on the wave machine.  

 

    
    
 After the cruise, we drove up to Daytona to visit my mothers childhood best friend and her husband. We had a wonderful visit and then drove to Orlando where Rosemary got an amazing surprise. Nona and Uncle Dan flew out to meet us.  I would share the video, but I left my cell phone in the bathroom of the Orlando airport and haven’t replaced it yet.  Rosemary is (in the words of my nephew Ryan) a Harry Potter addict. She started reading the books, and I promised that if she finished the first 3 books I would take her.  We picked a great time to go, because the park was at one of its least crowded points in the year.  
  
   
    
   
 It was a wild and fun 2 days, but sadly it ended for me in a horrific cold and an abrupt end to my 7 month time in menopause.  The cold  however, is the cold to beat all colds.  The cold that made all the previously mentioned MS pain rushing back with full force (this is what happens when a post hscter gets sick.)   It is pretty bad and nothing is helping the pain.  It does however force me to look in that rear view mirror, remember again how very blessed I am and want so much to be healthy again.  But, I got the point…. Ready to be post cold now.  

Xoxo

Colleen

Day + 186  – The 6 Month Update

~ Colleen ~ Leave a comment

6 months. Wow! I really can’t believe it. As everyone told me it would be, this recovery is a ROLLERCOASTER! One I would gladly ride again, but thankfully don’t have to. Please remember that I write the truth of my recovery. The down moments are just that. Down moments of a procedure I support whole heartily and count as one of my life’s biggest blessings. The first year of your recovery, you are HSCT’s Bi$@&. I forget to remember this on a daily basis. When it is good….. BOY IS IT GOOD! But when I’m stupid….. You get me.  
Let’s see, where were we since I last wrote… Stopped my antivirals because of 2 months in gastrointestinal hell. Spent the next couple of weeks…So happy, feeling alive, whose sick? Not me ******BAM****** SHINGLES! Then bed followed by more bed, followed by oatmeal bath, followed by… You get it. 2 ER visits and a bit of morphine later, I am now waiting for an MRI of my lower lumbar to see if it is something, non shingle related that is causing the new crippling back pain, that has thankfully eased up a bit. The funny thing is, I know what is my fault and what isn’t. I know that throwing a communion party 1 month after I get out of the hospital is going to result in an illness STREP TROAT. I know stopping the antivirals to escape the hell I have been caught would probably result in (and did) SHINGLES. But I struggle with when it comes to picking the best of two really sucky options.
Option 1 – Stay on the Valtrex and relive the worst stomach virus I have ever had on a daily basis for the next 6 months.  
Or
Option 2. – Stop the Valtrax and risk getting shingles (hoping they avoid the eye and face area) yet again and possibly again) over the next 6 months and turn into a morphine needing pitiful example of myself.
What do I do? There are no other mediation they can give me and I am the rare person who reacts like this to these drugs!!! What I do know is that I have to (and want to) work, be a mom and have fun again. Really, I want to be reliable. This current predicament does not help that at all. I’m always sick at home because I give it my all in the office (I know no other way, never have). To be honest, I deliberately skip pills to be able to go in at all. Then the stress and speed at which I work leaves me barely able to get my daughter to bed. More often then not, I’m in pain when I do get home from overdoing it. Knowing me, I chose to go back to work at 3 months remotely and at 5 months I was released to go in the office. I think for normal HSCT, and the stressful job I have, that is pushing it. But then, throw my bitter battle with Valtrax into the mix and I can barely be me… Much less work or take care of my child. Thank God for Grandparents and friends to help when I can’t.
I’m thinking of seeing what a gastro doctor has to say, but I’m really not too hopeful. I could really use an option 3 or 4 if any one has it. I feel that I have an obligation to all of those looking at HSCT to show them a normal recovery. This is not normal and is quite honestly… Starting to piss me off a bit. But, it’s my normal, so there you have it!
I was lucky enough to to have my first ACL trip (Austin City Limits-big music festival) with some friends and my brother in law Dan. Because of the shingle pain, we rented an electric scooter and I cursed my MS past self for never getting one before. Sure, it was a bit odd to be at the weird festival in a 4 wheel Phoenix scooter, but hey…. Whatever. It was also super fun!We all had a really good time. That is untill I 
1: had a bad encounter with a urinal I didn’t see in the handicap port-a-potty. Thus being left with a disease filled middle finger I show to anyone who asks… Or doesn’t.  
And
2: I woke up on Sunday AM to a new battle of Valtrax war. Since then…. I am trying to get over that so I can work and I’m stuck in the loop of options 1 and 2.  
Not my best couple of weeks really. But, as I mentioned, there were good times too..

   
    
  

I couldn’t resist. *yes, I am currently using all first aid supplies available to prevent an infection. Also, where ever I took Thst picture, they need to clean up!
Xoxo
Colleen
PS. I’m exhausted at night and can’t sleep. This causes me to try and sleep in. Ambien, Ativan, and clonzapam don’t do the trick. I think it’s my body’s way of slapping me!

Day +173 – Shingles Suck, But I’m An Idiot So I Shouldn’t Complain

~ Colleen ~ 1 Comment

I wish I could post a lot of awesome things and stories of how much progress I have made this week, but I can’t because I’m an idiot and I have shingles.  You know what, it’s not fun.  My MS spasticity and headaches/eye aches  are going strong and the shingle pain alone has kept me in a pain killer coma all week.   I mean talk about paying for a bad decision.  In my defense, it wasn’t even a decisions the time.  I was so sick from the antiviral meds that I had to stop.  Even if just to be able to go to work.   Well,  we all know how that turned out.  The good news is that I have only needed one nausea pill this week.  I don’t doubt my stomach will revolt again, but I’m ecstatic for the break.   

Rosie has been doing so well.  She is so cute.  The fact that she can’t hug me makes her want to hug me even more.  lol.   I love teasing her about it.  I must admit, since Shinglegeddon , sleeping with me was not (and is still not) an option, so when I finally pass out (yet to happen tonight and it’s nearly 5am), I get a decent nights sleep.  Waking up is like waking up to a hangover and realizing you fell down a hill of poison ivy then accidentally lit yourself on fire.  It’s not fun and I know that from experience!   Just kidding, I didn’t light myself on fire.  Lol.  It also helps that Super Nona is back in town and Rosie wants to spend every waking hour at Nona’s house. 

My parents, Rosie and Fran (Nona)   

 

Some lucky girl she is!   

Xoxo,

Colleen

PS – These pictures were taken right before I went to the ER/urgent care. Oops. Sorry restaurant goers!