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.

Xoxoxo

Colleen