It's been so long. I haven't written in a long time. That is supposed to mean my life is getting back to normal, right. Well yes and no. I am home and doing my best trying to avoid doctor appointments. I am trying to live a "normal" life. However I have crossed over to a new reality. A reality of having a handicap. A life of adjusting and learning about what I can and can't do, at least for now. Also living with chronic pain and the flare ups that have seem to have no pattern. I am in denial a lot of the time, believing I can do more than I think I can. I have gained a lot of weight as a side effect of my medication and my lack of physical activity due to my handicap status. Plumping up is a "good sign" because I have never gained weight while having cancer. However, this "good sign" doesn't feel very good for my body image. My ego is suffering.
First of all it is very hard getting dressed, physically. My right leg being numb and my "handicap" doesn't work very well. Also many of my clothes dont't fit like they used to. I use 2 canes at home to walk. Using the stairs is scary and a very careful act. I haven't been able to wear anything but running shoes or crocs. Using the shower is scary but I do the best that I can. I have taught myself to drive with my left foot. I will only drive short distances and not on the freeway. I use the scooter/amigo at the grocery store which allows me to buy groceries. When I get home is when I need help getting my groceries to the kitchen.
Canyon and I have decorated my cane with a variety of stickers including: planes, dogs, ice cream cones, smiling faces and dancers. When my leg really hurts I sometimes crawl which can be fun because I am at Canyons level. It also doesn't hurt. I've had 3 falls since returning home. One without injury. The second, a sprained ankle (my numb foot). The third a sprained finger. I am hoping that I have no more falls. From my sprained ankle I learned I have osteoporosis too which makes me more susceptible to fractures. Another reason to take calcium and be careful.
It's a full time job taking care of my body and my health. This is why there are such programs in place like disability funding. Thankfully I qualify for disability, a benefit I am eligible to receive due to my condition. It's based on my diagnosis and life expectancy. I also receive a minimal benefit for Canyon. This is helpful due to the expensive monthly COBRA( health insurance) bill. My disability income almost pays for our health insurance. I also qualify for an extension beyond 18 months of cobra due to my disability status. I am grateful for these benefits because I also had to finally let go of my job. I was on an a "leave of absence" but the reality hit, I am not able to go back to work. My disability and pain are my job. It was sad to come to this realization. I still feel capable in my brain but I can't comply with the physical demands of the job and it's a sit down job too. I knew "quitting" my job was coming. It's bittersweet.
So I am off to new adventures and freedoms. Healing is my number one job. Cooking within the rainbow connection is part of my goal. Cooking in general is my new hobby. I did just make my first chocolate cake from scratch for my hubby's birthday. This was not part of the rainbow connection but it was a first for me, something I have always wanted to do. It turned out pretty yummy too. Cooking and baking have been my latest hobbies since returning home. A hobby that has added to my extra pounds too.
My next scan is scheduled for June 13th, a Wednesday, and my doctors appointment with my oncologist is on Friday, June 22nd. I am scared because each scan feels like there's more at stake. There are less options the more diagnoses I have. Please send prayers, love, good vibes, healing powers. I'll take all that I can get.
First of all it is very hard getting dressed, physically. My right leg being numb and my "handicap" doesn't work very well. Also many of my clothes dont't fit like they used to. I use 2 canes at home to walk. Using the stairs is scary and a very careful act. I haven't been able to wear anything but running shoes or crocs. Using the shower is scary but I do the best that I can. I have taught myself to drive with my left foot. I will only drive short distances and not on the freeway. I use the scooter/amigo at the grocery store which allows me to buy groceries. When I get home is when I need help getting my groceries to the kitchen.
Canyon and I have decorated my cane with a variety of stickers including: planes, dogs, ice cream cones, smiling faces and dancers. When my leg really hurts I sometimes crawl which can be fun because I am at Canyons level. It also doesn't hurt. I've had 3 falls since returning home. One without injury. The second, a sprained ankle (my numb foot). The third a sprained finger. I am hoping that I have no more falls. From my sprained ankle I learned I have osteoporosis too which makes me more susceptible to fractures. Another reason to take calcium and be careful.
It's a full time job taking care of my body and my health. This is why there are such programs in place like disability funding. Thankfully I qualify for disability, a benefit I am eligible to receive due to my condition. It's based on my diagnosis and life expectancy. I also receive a minimal benefit for Canyon. This is helpful due to the expensive monthly COBRA( health insurance) bill. My disability income almost pays for our health insurance. I also qualify for an extension beyond 18 months of cobra due to my disability status. I am grateful for these benefits because I also had to finally let go of my job. I was on an a "leave of absence" but the reality hit, I am not able to go back to work. My disability and pain are my job. It was sad to come to this realization. I still feel capable in my brain but I can't comply with the physical demands of the job and it's a sit down job too. I knew "quitting" my job was coming. It's bittersweet.
So I am off to new adventures and freedoms. Healing is my number one job. Cooking within the rainbow connection is part of my goal. Cooking in general is my new hobby. I did just make my first chocolate cake from scratch for my hubby's birthday. This was not part of the rainbow connection but it was a first for me, something I have always wanted to do. It turned out pretty yummy too. Cooking and baking have been my latest hobbies since returning home. A hobby that has added to my extra pounds too.
My next scan is scheduled for June 13th, a Wednesday, and my doctors appointment with my oncologist is on Friday, June 22nd. I am scared because each scan feels like there's more at stake. There are less options the more diagnoses I have. Please send prayers, love, good vibes, healing powers. I'll take all that I can get.
Emotionally I am on a roller coaster again. This is appropriate as we just visited Disneyland. I am not a ride fan so go figure I am the one on the roller coaster. Disneyland was fantastic, watching the excitement in my child's eye while riding a train. Remembering the "small world" ride and watching my son experience it was priceless.
On my other days I am caught up in pain and managing my health. Getting prescriptions refilled again and again. My pain is intense as I write and I debate whether or not to take more pain medicine. Sometimes the meds work and sometimes they don't.
The worst part is the anxiety I feel along with the pain. The anxiety stems from the unknown duration of the pain.
Peace and Love to your mother, she wants your love.
Sent from my iPhone
5 comments:
Alexis, you are a warrior mama for sure. This week I have been thinking about you so much! I can't wait to see you this weekend and 'get my hands on you' so to speak. Sending you a sweet peony hug with Butterfly kisses, Karen
Sending love and prayers your way. Express delivery. You are a courageous and inspiring and clearly woman, mama warrior.
Kathy (Maryanne and Nicole's friend--met you at BAAY back in January)
Dear Alexis, You and I have never met but I'm a friend of a friend. I'm deeply moved by your story and your gargantuan struggle. I can see that many days you live minute to minute. The fact that you are able to be of such good cheer and maintain optimism in the face of such sadness and adversity is a tribute to your faith and strength. I hold you in my heart.
Dear Alexis,
Sending love, healing vibes and strength of spirit your way (which, bless you, you already seem to have in abundance!). Bless you as you go through each day. I suffered from debilitating Rheumatoid Arthritis for 2 years in my mid 20s (before kids) and I feel I can relate on some level to the frustrations of being handicapped, where once capable, coming to terms with the 'new rules' of your life and the feelings of 'overwhelm' from living with chronic pain. It sucks, but there are still moments of beauty, of comfort, and there IS healing. I found Dr. Andrew Weil's book, "Spontaneous Healing" and Shakti Gawain's meditation tapes, "Four Levels of Healing" to be inspirational, and they helped me believe in my body's ability to heal itself (with a little help from modern medicine!). Don't forget to breathe. Allow yourself kindnesses. From the Desiderata: "Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe, no less than the trees and the stars; you have a right to be here. And whether or not it is clear to you, no doubt the universe is unfolding as it should." Much love going out to you. Carry on warrior.xxo
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