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

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?  

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

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

Hi there!  I hope everyone is doing well!  I am finally starting to feel like the pre-MS me again!   I never realized how much damage this disease did to my body,  having that damage healed really brings to light the suffering I was in.  I now have no cane,  my eyes are good,  words flow again… most of the time and urgency is gone.  My arm pain is nearly gone (didn’t even realize that was MS) and my energy level rises every day.   I do fight to get to sleep at night and then want to sleep all day.  I keep working on that. 

I went back to work in July,  but from home.  It is a crowded office and I still worry about getting sick and having a set back. After slowly getting a limited again,   I spent most of the month having tests done for a stomach virus.  We believed that it was CDiff,  but he latest test said it was not.  It was most likely a virus that would not leave.  It was during this that I realized the good old store bought Clorox and Lysol wipes don’t kill most stomach issues.  You must either use 1:9 ratio bleach to water or buy these (I got mine on Amazon):

  
Other then that,  we have been staying busy.  I  switched bedrooms and moved into my spare room.   I LOVE it!   It is set away from the open areas and so much more peaceful.  I also have  enough room to put a chair in it.  I opted for a massage chair from Brookstone.  50% off meant I was destined to own it.     

 Obviously that isn’t me, but the add.  Lol
Since I hit my 4 month mark this week,  my friend Randa and I celebrated by going to a small local resort that has a safe, small, clean and fun waterpark.  There were only about 20 people there so Randa, the kids and I all had a blast.   Then I became a real Texan and went to my first Cory Morrow concert at a local dive.  It was outdoors and small.  It will not be my last concert.  He was wonderful and the food was great.   It was truly the thing I really needed.  Trying to be cautious was and is mentally killing me. So thanks Randa!  Love you!!!

   
 By far,  the best part of this experience has been meeting and talking to the wonderful people who are part of the HSCT community.  I have been blessed with the opportunity to help others  who are considering this treatment through this website, Facebook and even my amazing neurologist.   Every time I talk to someone,  I am in awe of how much bravery is in this world.   I truely believe that the ability to have HSCT has been a gift from God meant for me to share with others.  This is a gift I happily accept!
Xoxo

Colleen

I think that sometime I act as the model patient… I think that more often… I’m not.   Now the funny thing is that I fool myself into thinking all is well and my mis steps are in no way intentional.   If my doctor said don’t eat lettuce,  I would never eat lettuce again (notice I didn’t use chocolate as an example). It’s slow and unintentional. Slowly, I push the limits until the next thing I know I’m sitting at the opening movie of Pixar’s Inside Out. Well,  I have now had 2 pretty significant illnesses in 1 month and I have finally woken up.  I’m still have a baby immune system, I’m still in a VERY life threatening position and I am still recovering from the side effects of a very strong  chemo regime….   I finally realize the severity of my situation and have gone back to my April/May precautions.  I get this, I know it and I’m coming clean to everyone.   Now for my last 3 weeks.

Amy and the boys came for a wonderful week in the beginning of June.  I miss my boys so much!  It was hard to stay home while everyone went to all the amusement parks, but I am in no way physically strong enough to go and then there is the fact that they are a factory for every germ on the planet. 

 
We did get to go to dinner a few times and the week flew by.   The weekend they were here, we had Rosie’s birthday party at a local art studio.  She wanted a Paris theme.  It was nice, quick and stressless.  I kept it very, very small.

   
   
It was pretty fun and I’ll I had to do was sit.  😀

Before we blinked the week was up and it was time for them to leave.  That same day, my BFF and her daughter flew in.  This is where it all went downhill.  Wait, that doesn’t sound good.  Jen was here and we had an amazing time. Seriously, it was amazing.  I cried my eyes out when she left. I meant my strict HSCT regime went down hill.  Repeat.  Jen in no way is associated with the downfall.  Love you Jen 😍❤️😘❤️😘❤️😘❤️😀

  Lol. It was just that we were so busy.   My parents left for an Alaskan Cruise 2 days after Jen got here and we signed the girls up for all day camp the following week. Plus, we had 2 girls under the age of 8.  Through all the craziness, I loosened my grip on post HSCT protocol.  Maybe I didn’t sanitize religiously,  I picked up dog poop once or twice,  I went into a store that was probably a bit too crowded for me. Maybe, I took her to the Alamo but stayed outside.  People, these guidelines/rules are there for a reason!  FOLLOW THEM AND DON’T LOSE SIGHT.  I did and last Friday, I started to experience some of the worst pain in my life.    

You see, all week I had the MS hug (grip of death / feels like you just bruised every rib in the front and back of your body) and had pain with some difficulty breathing.  I wasn’t concerned.  I know the HSCT was to stop the progression of the disease and if my body was in distress, I would experience old symptoms.  I attributed that to my high hormone rates, thank you chemically induced menopause. I’m sure much of it is.  But, last Friday, it hit a new limit.  It was honestly the worst pain I have ever felt.  So bad, that when I finally took enough pills to dull the pain even if slightly, I was so exhausted that I fell asleep… This lasted until 6:30 PM Saturday when I woke up,  ate and fell back asleep 4 hours later. Sunday we stayed home and the nausea that snuck up on me, the 4 hours I was actually awake on Saturday, was back with vengeance.  Nothing really stopped it.  Not bread, not crackers, ginger ale… Not even zofran (at least I tried food before jumping to the nausea pills).  That night…. I realized that my pain and nausea wasn’t totally from hormones.   Unfortunately….it was from a stomach virus I caught.   The next day,  I lay in agony when Rosie came into my room to talk to me.  Somehow, while talking to her,  I felt my stomach and noticed a nickel sized lump on the side of it.  I did one of these things:

1.  Quietly used logic to realize it was probably a swollen lymph node

2. Call my doctor to make an appointment

3. Scream like a baby for my mother as I kept my hand on the lump.
Bingo,  #3!   My mother called my PCP and in 1 hour we were on our way.  Well, it ends up it was a virus.  I was running a slight fever and the lump was one of many on my stomach, arms and legs… Scar tissue from the countless MS injections I have had in the past 2 years (That never crossed my mind). I received some instructions, a refill of zofran and we were on our way.  It’s Friday and I fell 100% better and most importantly…. I learned my lesson.  A fever of 101.5 and/or dehydration means hospital stay for me and that was enough to scare be back into my new reality.

 Well,  it’s 11:30 and I need to try and sleep.  I can’t thank all my friends who have flown down to stay with me Mary, Emily, Kevin, Yvette,Gary, Amy, Connor, Ryan, Jen and Izzy (or have scheduled to come down.. Mary and Emily again…Cristine, Tara and Theresa).  I am still in awe of the love and support everyone shows us.

Xoxo

Colleen

PS.  Get a load of all my hair!   Lol
  
Dinner at Uncle Dan’s

Well, I hit the 2 month mark and I have to say I haven’t been feeling that well since being sick.  On top of that ***TMI ALERT***  I am going through chemo induced menopause.  They aren’t sure if it is a permanent menopause or temporary, only time will tell. The thing for me is that the hormones associated with this are causing my old MS to flare.  Spasticity, headaches, fatigue and some other.  It’s bad, but I feel it is still better then pre HSCT.  One thing that isn’t better is my sleeping.  I have barely slept in days again.  Not even sleep medication is working.   Probably hormone related.  Then again, the 51 lb octopus in my bed isn’t helping… She will be in her own bed again soon.  Today I went to my hematologist.  He is the nicest guy and I say this even though he took 1million liters of blood out of me today… Ok, like 8 vials.  Most of my blood looks great, but my white cells are low. Not crazy low, but under 4.8, so except for PT and my daughters very small birthday party.. I am on home quarantine. I was shocked, but that is ok.  When I think about where I was 60 days ago…. It still blows my mind.

I had an amazing visit with Yvette and Gary as usual.  I can’t show you any pictures because… Well…. I was in my PJs the whole time and we didn’t take any. The highlight was my birthday gift.  They had a personal chef come in and cook for us.  Yvette and I sat at the table in the kitchen and had a great time….  As did everyone eating the food.  I love experience gifts, this was amazing.

This week, Amy is flying in with my nephews.  We are all so excited.   It has been 6 months since we saw the boys and I haven’t seen Amy since I was in Prentice battling the stomach pain monster from hell.  My parents have been very busy planning all the fun things they are going to do. It will be a fun packed week for the kids and I will be able to really rest in the mornings and spend a little quality time after they get back. The day they leave, my BFF Jen is flying in for 2 weeks to help me while my parents go on a much deserved cruise. It will be just like college except… No wild parties, drinking, bars and we now have kids… So if will be nothing like college.  I bet we still kill it.  Lol

I did get to have a birthday dinner with 3 very special ladies from work on Friday.  They were all nice enough to go as soon as the restaurant opened so we beat the crowds.  It was so great, I miss all my work family and it was like being home again.  I’m obsessed with this lipstick from lime crime.  It was so funny because I was wearing it that night and all 3 ladies tried on the same color and it looked totally different.   I have a few colors from them…  Pink velvet is my favorite:

  
I took that today and you can probably tell, I lost all my eyelashes.  Like my hair, they are growing in fast.  I have been using the California Baby shampoo and lotion from my previous post and this week I added the supplement  Hair, Nails and Skin from The Works (click here for an overview) .   It’s working.  I swear my hair is growing everyday.  Still patchy and very bald, but it won’t be long now.  

Well, it’s 3:30 AM.  I have to go toss and turn for a few more hours.  Hope you are all well!
Xoxo,

Colleen

I can not believe it is day 52.  It just blows my mind.  Last I wrote I was pretty sick.  Actually sick….  not HSCT sick (although that didn’t help me at all). I am getting better and prating to stop the extra antibiotics soon.  Nausea is not my friend with them. 

 I was telling a friend (and wife of a stemmie twin (CIPD) …Hey Judy) that I don’t feel the miraculous recovery some do.  Now…. Please remember I was given HSCT because I have failed 5 medications and  I was beat down before the transplant.   I am in no way saying I don’t think it worked.  I KNOW IT WORKED!  I am trying to say, I didn’t have the run out of the hospital and dance the halls recovery.  I know my recover is more slow and steady… Now, let’s hope I win the race. It’s funny, my body is still so off from the chemo that I haven’t recognized everything yet. There are things I didn’t even know we’re MS related that have gone away… My left wrist had miraculously stopped hurting for the first time in 2 years. My legs are a mess, (but to be honest… Physical Therapy was really hard on me this week… It’s because I haven’t used those muscles. I wish I didn’t have to go again tomorrow. #lazy. ) I do think my words flow more freely, my walking has been better and up to getting sick and going to PT! I haven’t had optic issues or pins and needles since chemo (with the exception of being sick… They came back then… But everything came back when I was sick.  Totally normal. 

Ok, news in my life

I am so very excited because 2 of my besties are flying in from Atlanta for the weekend.  It also happens to be my 39th birthday Saturday.  We have a fun weekend of couch sitting and netflixing scheduled.  Woohoo.  They will be here tomorrow and I promise to post of our adventure.  Even staying home and doing nothing is an adventure with Yvette and Gary.  I have really been staying in the house most of the time so it will be a welcome change. 

Lol.  I also got word from my neighborhood HOA that I was approved for a therapeutic hot tub.  My MIL Fran has one in her house down the street (came with the house) and absolutely hates taking care of it, so we are moving 4 houses.  (By we, I mean the hot tub guys) That will be so nice to have.  My bones just ache most of the time. Anyone who has been on IVIG or any MS med really will know that feeling.  Except now…. It is lessening.

Hair- it’s starting. Krista next door gave me my new favorite thing!  So, my scalp has been a mess.  I even had to go to the doctors because I had what I thought may have been psoriasis but was really folliculitis.  My head was oily feeling, I has these sores (sounds nasty but I don’t know what else to call them… Infected hair folicules?). Anyway,  she gave me a bottle of this shampoo and lotion and it cleared in a day.  I swear, my hair has even grown more.  Krista said its the calendula.  Amazing.  Best baby product ever.  

 Here was my head at not even its worst 

  
Here is it today – weird angle.  

 
On a somber note,  the rain and flooding here in Texas has been a mess.  It is so very sad.  The places that flooded are places we visit often.  It’s heartbreaking to see the water covering the shops and the wreckage that used to be homes.   There are still 8-13 people missing since Sunday.  We keep praying for miracles, but as the days go by it gets harder and harder.  It brings back many hard memories of our days following 9/11.  We didn’t know if Jason or Dan were alive or not.  We would get conflicting reports and as the days rolled on, we each came in our own time to accept the fact that they were gone.  It’s was almost 2 months later that we got the first confirmation.  I pray for these families that whatever God has in store for them, they know the outcome quickly.  Not knowing and allowing yourself to hold onto a shred of hope despite your logic is worse then the truth.

Xoxo

Colleen