Day +241  – My Rear View Mirror

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

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

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!

Day +167  The Day I Regretted Being an Idiot…(again)

Remember 2 days ago when I was so excited about getting the ok to stop my antiviral medication?  Here is a refresher…

So, I had a rough July and August.   I thought I had a bad virus, then Cdiff, then food poisoning .  Finally, we realized that I had none of them, but I had grown extremely intolerant to my antiviral meds (AV).  I called Chicago and they switched my meds.  After a week of the same issues, I gave up and stopped the meds altogether.  Earlier this week, my conscience got the best of me and I told my PA in Chicago that weeks earlier I stopped my AV meds.  At first she gave me an option… 1. Start again 2. Stay off a week then start again, 3. Stop the meds .  She did however say that they 100% advise against option 3.   I agreed to start the meds the next day.  I didn’t.  Then, I got an email from my Chicago PA letting me know she discussed it with Dr. Burt and he agreed to let me stop them as long as I went to my PCP at the first sign of a rash.
24 hours later…  

Shingles! That was after dinner and tonight it’s about 3x worse.  So, now I’m on double the dose of antiviral meds and will be quarantined until they stop being contagious.

Thank God for Netflixs and painkillers

Xoxo,

Colleen

Day +165 – Look at Me

fina.ly, finally I was given permission by Dr Burt himself to stop taking my anti-viral medication.  It has been the cause of my 2 month stomach virus (that was never a virus).  I have to be very, very careful and make sure I stay away from anyone who has chicken pox, shingles or has had any, live vaccines (shingles, nasal flu).  I can’t contain my excitement because the best I have felt is when I am off them.   

I started back to work on the 8th.  I missed everyone so much,  but it has been so hard. The constant speed at which I work is causing me to burn out and I end days with bad migranes and I’m having trouble stopping when I need to.  I try to go in later and leave earlier, but I’m still struggling so much.  I am lucky to be surrounded by supportive people.  I just pray it gets easier.

On the 11th, we all went to the local JW Marriott for the night.  Their watermark is perfect,  it was such a nice weekend.  So many of my local friends came and spent the day(s) with us and Rosie was thrilled and surrounded by friends.   Dan and my parents were with us, but Fran, Kevin and the rest of the family were back in NY.  That is always the hardest thing when we are separated.  

Other then that, life is going on.  My hair is slowly growing, I’ve been doing things I haven’t done in years and I’m happy to go places instead of wanting to stay home and rest all the time.  My favorite thing is helping others get started in the process that changed my life for the better. I’m actually going to get cards made with all the info information about HSCT, because I’m asked so often about it. 

For now, I look forward to the months to follow and turning into a mother that has energy to do things with my beauty.  Having her notice changes in me continues to melt my heart.

   
 
Xoxo

Colleen

Day +152 – Life as a Single Mom…again  

This week, I’ve been a single mom for the first time in a very long time.  Just when I think I can’t thank Dr.  Burt and his team anymore, life as I didn’t remember it pops up. My parents and Fran were all away this week and against everyone’s fears, I prevailed.  I felt like a real mom again.  A fun, healthy mom (nausea excluded).   I can’t express what that feels like.  It is as if I have been living in a fog for so many years and I suddenly emerged. My greatest wish is that everyone suffering an autoimmune disease can go after the unknown like I did.  

This week,I go back to work in the office (I’ve been working from home). I admit that I am scared.  My job is high stress and I don’t want anything to stop my recovery.  I have a long way to go. I just have to trust in myself to stop when I have hit my limit. Honestly, I have more trust in my work family to tell me to stop, but I will try.  How did those of you who went back to high stress jobs cope?  

IMG_1011
This week is one of the hardest for my family and I.   This year is 14 years since my fiancée and father in law were robbed of their lives during the WTC attacks.  It’s odd, but as I feel better, I miss Jason more and more. I know how hard it would have been for him to see me sick and I know he is with me.  I can feel it.  I think that is why family is so important to all of us.   We are all that we have and we know what loss is. But, with that, I believe that God works in mysterious ways.

 
My blessings continue.  This week, I found out that my very good friends from Atlanta planned a trip for next year to celebrate mine and my BFFs (AML) recoveries. This is such a large group of some of the best friends I have even  been blessed to know and it melts my heart to be so honored.  On top of that, next month, my childhood BFFS are making the trip to Texas for a mini reunion.  I often have to sit back to fully realize the magnitude of my blessings.  Included in this is my amazing nephews.  One of which turned 13 this week.  I am so honored to be his aunt.  He is remarkable.

Well,  I am off to sleep, but I wish you all the very best of labor days and hope that whatever ailment you are suffering from, that God will see you through.
Xoxo,

Colleen

  

Blessings and Other Insomnic Ramblings- Day +136

Deep down inside, I always thought I was lazy.  Everything exhausted me and I had no desire to do anything.   I would overwork myself and blame all my pain and screaming symptoms on stress.  Well, I am still recovering and I still get exhausted, but suddenly I have the desire to do things.  I can stay outside in the 100 degree heat and not lose my vision.  I can walk unassisted and I can go months without having excruciating pain in my eye. I can feel my limbs and even can tell when my feet are hot or cold.  I have said this many times before, but I never really cried when I was diagnosed with MS.  I never felt sorry for myself and I never doubted medication would work for me.   Well,  it didn’t and because of my many medication failures that seemed life ending at the time, I found life again. Now, nearly 5 months post transplant, I want to cry tears of joy.  I have my life again and that is because I was given the gift that millions of people in my situation don’t have access to.  I was blessed once again in my 39 years of life, this time with the chance to have HSCT before my disease progressed to the point that it would be too late for me.  You see, HSCT will most likely be given FDA clearance in 10 years.  That is how long it will take once this 3rd phase trial is officially ended. At the rate I was going, that would be too late for me.   Not a day goes by that I don’t recognize the magnitude of this blessing.  I am still exhausted, in pain and recovering, but I feel like the old me again and I forgot what that felt for.

As September 11th approaches, I reflect on life as I do every year.   I have always taken the “Pollyanna” view on my life… as unique as it is.  I lost the love of my life nearly 14 years ago on that horrible day, but I was so blessed to have him in my life, even for the short time I did. I was given the two best parents I could ever ask for and a plethora of generous, funny, loving and supportive friends.  I was blessed with the addition of another amazing family to add to the one I already have.   My biggest blessing was and always will be my Rosemary.  Not a day goes by that I don’t thank God she was brought into our lives.   She is the one thing that can cheer us all up on even the darkest of days (or weeks). 

   
 She also gives amazing makeovers!

   

 

I am still trying to find a reason to consider insomnia a blessing…. Time to blog I guess.  Lol
 
  

 I have been running through life in the last 14 years knowing I have been given these hurdles and gifts for a reason. It hasn’t been until recently that I discovered that purpose to help others get the gift of HSCT. It brings me so much joy everytime I get a text, call, do a consultation or just talk to others in the position I was in. Spreading the news that there is a REAL hope for all of us that were told a normal future was probably not going to be a reality is an amazing position to be in and I am always happy to spread the word of HSCT. 

I began working remotely again in July.  I am on a reduced schedule, but it is so nice to be back with my work family.  It is hard and in hindsight, I rushed it… But thanks to an amazing leadership and execution team I have been able to slowly get back into things. Most of all, thanks to Cecilia.  She is my rock and one of the greatest people I know.   

As most of you know, I have been battling some stomach issues and have been getting tested nearly weekly to see what the cause is.  Well,  thanks to Dr. Uncle Dan, I discovered it was the antiviral pills I am on to prevent shingles.  This never crossed my mind  since I have been on them for 5 months, but apparently my body developed a strong dislike for them.  I have to be on them for a year, so I am anxiously awaiting another option along with a note allowing me to return to the office.  Because of my spanking new immune system, it will be a while longer before I am able to be in crowds, go to meet the teacher at a normal hour or take my daughter to the doctors. But every day that passes I remember that it is temporary and if I didn’t have HSCT, that would have been my permanent reality.
I guess what I am trying to say in my lack of sleep, all over he place way  is that for the first time in a long while, I feel I have a purpose.  This to me means that HSCT fixed not only my physical body, but my emotional one as well.  My wish is that everyone that is battling an autoimmune disease like, MS, Lupus, Devics, CIPD and many more… Find their way to HSCT while they still can.  If I have even a small part in making that happen, I have fulfilled my purpose.

XOXO

Colleen

It’s officially 24 hours since I woke up.   My next hurdle is to fix my insomnia,  lol