Tuesday, October 13, 2015

Day +70: Riding the waves & Sadness is ok

Days home: 59

I have listed the improvements and challenges (continued or new) below. The improvements are tiny, yet monumental. Some challenges come and go..some days better than others, but still an overall struggle. Hence, foot nerve pain is in both.

  • Nerve pain in feet
  • Strength in legs
  • Write more like an 8 yr old  vs. a 5 yr old 
  • Hair growth - eyebrows filled back in, eyelashes are trying, and I am filling in on top
  • Took 4k or more steps per day at least 3x a week (I am determined to get to 10k eventually)
  • Nerve pain in feet
  • Balance
  • Right hand function
  • Right drop foot
  • Driving
  • Energy
  • Asthma (bummer)

This week I start weekly PT to do the real work. Last week was consult, eval and baseline setting. I will also need OT for my foot and hand. Being right hand dominant, I have two choices: learn to write/dominate with left hand OR try to improve right hand function. There is a lot of nerve damage in that hand.

I also meet up with the pulmonologist about the asthma. :( I still have breathing issues sans inhaler, so I may continue treatment for several months. There is still hope that it is allergy induced. In the last couple weeks, my allergies have pushed past the daily allergy meds I take. 

Being Sad
I wanted to discuss the emotional side of this journey because its not specific to my disease or my treatment. Depression is common in general. It's especially common for the chronically or terminally ill. Depression is one of the five stages of grief. 

Grief is brought on by any kind of loss: job, home, relationship, loved one, health, ability, etc. Its ok to experience this stage of grief. They key is to try not to stay there too long. 

I spent many days crying, screaming into a pillow, throwing things....and I still get upset over having to ask for help to open a bottled water, or dropping and shattering a bowl for the 2nd time that week. It's less and less, but it's there. In time I will get upset and less and less and I accept my "new normal". Acceptance being the final stage of grief.

The fascinating thing abut my journey is that I mourned my healthy self when I was diagnosed. Now I am partially mourning my ill self as it slowly disappears, but I also have new challenges and loss of ability that I have to reconcile. 

I come from a long line of mentally strong (insert stubborn) people, which in my case, is helpful. Before I lost my grandfather last year we discussed this treatment and the recovery. He didn't say "I will support whatever you decide" he said "you will do this, and you will get better".....as if he just knew. That is what I focus on when a meltdown presents itself.

Hair is a funny thing
Reflecting on my journey, there has also been a hair journey....thought I'd share this collage of my hair through it all. 

The pic just before the blue wig was taken yesterday. Kinda getting a hair line, but it's quite light.

Onwards and Upwards!
Hope you all have a great week. Be grateful, lean on a friend in hard times,cherish the simple things, cry/scream when you need too, thank your caregivers (if you have them), tell the people in your life you love them, laugh often, read a good book (I have recommendations!).


  1. You need to know that what you are going through is NORMAL!!! It took me three years and a shrink to finally explain to me that I hadn't worked through the grief yet. I finally understood then, why I didn't feel better mentally. Physically I was ok, but mentally I was a mess. Of course it didn't help to have a boss try to ultimately push you out the door otherwise you would have lost your job, make you feel like worthless shit. etc. etc....but I hadn't worked through the grief stages either. So sweetie I am there for ya!! Any day you need a pho run, you just call, I got your back. I remember crying over not being able to open a jar of peanut butter. It was the first day by myself and I wanted a PBJ sandwich but I couldn't open the jar one handed. I was so mad, then I cried forever it seemed. How silly now but then, I was devastated! I am there for you when you need someone to lean on. 'Cause I love you. You were my first girlfriend! I'll take you hair, no hair, goofy hand, just like mine too. Because its inside that is what counts. Virtual hugs always! xxooxx!!

  2. Thank you for being so transparent. You are a true and honest person. I love that about you. I understand the grieving process associated with a change in one's health status. Although I wouldn't wish the depression associated with the realization of a life of challenges, I am encouraged to know that you have a healthy outlook. Talking about it is essential for not letting it take over. Much love my sister. Better days ahead for us all is my hope. Hugs till I see you next.

  3. Good Update BabyBig Sis! Keeping Grounded; Onwards and Upwards indeed, this PT & OT should help speed things along. I'm hopeful and keeping you in my thoughts. Love you!