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
- Right hand function
- Right drop foot
- 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.
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!).