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



Day +165 – Look at Me, 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.



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?  

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.



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.



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



Day 124 – 4 Months and Finally Starting to Feel Like the Young Me Again!

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!



Day 88  – My Own Worst Enemy

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.



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

Day +64 – I’m not a Very Good Home Blogger

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!


Day +52 – Floods and other Ailments 

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.



Day +43. A Glutton for Punishment

Hi Everyone,

Sorry for the long gap.  I’ve been struggling with what to write and the will to write it. Since my last post I have been focusing on keeping my energy up, getting bloodwork, seeing my doctors here and getting ready for Rosie’s first communion.  What, doesn’t everyone plan a communion from their hospital bed as they are undergoing a major life changing procedure? So,it came to no surprise to me that I pushed myself too far.   

First, let’s get the important stuff done.  My blood work has been good and stable every week and I have now graduated to every other week.  I started physical therapy for my leg and foot.  We are going to focus on my gait next and most importantly, I have been avoiding crowds. All good.

This week was a little hectic. 

Saturday we went to a small Mother’s Day lunch at our dear friends Vonna and Sean’s house.  That was so great. 

Sunday was Vonna and Sean’s daughters communion.  While.  I skipped the church to avoid the crowd, I did go to the restaurant for brunch.  It was great. Afterwards, friends came over to visit their cat that I adopted.  We had a special Mother’s Day tea. Finally, at 5:30, we got the earliest dinner reservations possible at a nice restaurant close to the house where we knew we would be secluded.   This was also the first of many sleepless nights.

Monday bloodwork and last minute shirt shopping at stein-mart for the men.

Tuesday  Rest and get all the needed communion favors together.

Wednesday rest day 

Thursday was by far my most stressful day. Picture day!!  Started out with  Physical Therapy. At 4:00 I had an appointment  to get Rosie hair done.  They were running late and my 45 minutes to get her ready for pictures turned into 5… Leaving me with even less for myself.   I was unhappy with what I was wearing and that alone will ruin your day…. Add head scarfs, bad Rosie hair and a slightly muddy dirt track (thank God for my travel wheelchair and my dad) and it was exhausting.  But,  here are some of the results:


That makes it all worth it.

Friday was a good day.  One of my BFFs Mary and her neice Emily drove in from Austin with my brother in law Dan. I also had what turned out to be a 3 hour appointment with my PCP.i had her check my throat and ears because both had  been bothering me since the night before. I got the all is good and breathed a sigh of relief. I kept praying that if I had to get sick, let it be after I get to see my baby make her communion.  My prayers were answered.  I was hurting.  I knew I was pushing myself too hard,but didn’t know what else to do.


Saturday was beautiful and I was so proud of Rosie.  This time I had my act together,  I got completely ready before we even left to get her hair done. But, again, I hated my outfit…lol.   


We get. To the restaurant at 6:40, 10 mins late and I see all my family and friends sitting in the hall. My amazing friend Brooke showed up at 6:00 to set up and couldn’t get in the room.  I lost it.  The poor girl seating people. I am afraid I took my frustrations out on her. By 6:50,  we sat everyone, set up or not.   The kids had a blast and that alone was enough to forget the minor things that really don’t matter in the first place.  We went home and even if it was only 5-6 hours, I felt like I ran a marathon.  I knew I was “out of spoons” as they say. 

Sunday. To say I woke up with the worst migraine of my life was an understatement,  I was nearly paralyzed in pain. Thank God, Dr. Burt sent me home with migraine pills and after taking a Claritin D and the Maxalt, I laid in the bathroom on the floor waiting for the pain to end. Eventually, I fell asleep and woke up after dinner that night. The migraine was gone,but the bad headache lingered for another day or so.  Needless to say, I got 3 hours sleep that night.

Monday-Today I woke up feeling much better and decided to go to see pitch perfect2 as we have been planning for a while now.  Mary, Em and I are big fans. Perfect timing as the theater had about 15 others in it and none were near us. Soonsfter we said our goodbyes and the Austin crew headed back.  Then I layer down to sleep and realized something was wrong, took my temperature and at its highest was 100.4.  For me this is 5000. It was another very long night with no sleep and at 8am, I was on urgent cares doorstop. The doctor took one look at my throat and said… Oh yeah, that’s strep! He ransome cultures and although they came up negative, they decided to treat it as a false negative.  They a,so prescribed theta flu because my immune system is so compromised.   After we left, I called Chicago and spoke to Kaitlyn.  She agreed with the medications  and advised me if my fever spikes go101.5 I need to go to the hospital.  I laid very low and am feeling a bit better tonight.  Fever seemed to stay low.  Now I just pray I can sleep tonight.

On a side note,  my hair is slowly starting to come in (baby fuzz) but I seem to how r folliculitis.  My scalp is very tendor and nearly oily feeling.  Krista came over tonight and gave me some lotion and shampoo to use. In the 20 mins since I used it, it’s the best it’s felt I over a week. Once I. Test it some more I’ll post about it.

Moral of the story. I am not superwoman and I need time and stress less rest to heal.  It’s not fair to anyone if I repeat this week.  So HSCTers… Learn from my mistakes please.  I am43 days old.   I can’t expect to be 38 again.



Day +29 – Almost Human… Nah

Hi Everyone!

Today is day 29.  Tomorrow will be the monthaversary of my transplant.  I am starting to get more energy, but I have learned that every day out or active should be followed by a day of rest.  Since yesterday was a blood work day… Today I rested.  Boy did I rest! Let’s get down to business
Good news – platelets are down in normal range

Bad news – Hemoglobin is down to 10.0 (under 10 typically means transfusion,  so I’m hoping it doesn’t drop more)  

Expected news – My white blood cells dropped as well,  while they are still in the normal range,  at 5.6,  I have an increased chance for infection or sickness.  Just have to be very careful as Rosie makes her First Holy Communion on the 16th. 

So we have been laying low lately.  Rosie traveled to Arizonia with her Nona for a dear friends wedding.  She gets home tomorrow and I sure do miss her.  

I feel like I am nesting.  It’s kinda hilarious.  I have had the need to purge belongings lately.  I want to get rid of everything,  it’s so weird.  My mother helped me put together a new shoe case and I moved all my shoes out of the closet.  I moved all heels to the spare room in hopes that they will be used again one day.    I realized then that I don’t even like shoes that much and I have like 50 pair… What if I liked them? I pondered that thought as I went on zappos and bought some really cute flats.  This had a butterfly effect and now my mother is purging…. Except I’m not really sure where.  It’s all over the place.  So when I was up last night,  I sent her this link (click the words this link to view).  When I came downstairs today she said she has already done it! I’m still not really sure,  I’ve seen her plant, shampoo the rug on the porch, vacuum the furniture, play some iPad games… But I’m not sure where the purging is.  In her defense,  I haven’t left the couch…. stay tuned for more on this!  My father on the other hand has been putting things together for 2 days yelling NO ASSEMBLY REQUIRED!  This is what happens when you are away from home for so long.  You get back to things that need to get done. People if the HSCT world… If you have more then 6 days notice… Leave your home all done and assembly free.  

As for me… I’ve been resting and walking more.  We went on an awesome drive this weekend to Willow Loop here in TX.  Drives keep me sane.  It is so beautiful.  People who have never been to the Texas Hill Country do not know what they are missing:



See… We’re not just desert and cactus!