Tuesday, September 18, 2018

Long Overdue Update

Man, it's been a long time since I've written or updated my blog. Things have changed, but things have also stayed the same. 

Rachel, my miracle baby, is closing in on 9 years of age this November. I just passed my 9 year cancer-versary in July. I've been unemployed for a long time. I'm still fighting an ever changing battle with my health, although the battle is mostly invisible. It's this last aspect that is most troubling. 

My health is a puzzle. To the observer, I'm a healthy, normal, fit-looking 30-something woman. From my point of view, I'm s quagmire of odd symptoms, never-ending pain, and constant struggle. You see, cancer was the easy part of my journey. Chemotherapy was a cake-walk. Even the horrendous extended and numerous surgeries were nothing compared to my daily life now. My Thoracic Outlet Syndrome and nerve damage has not loosened its grip on me one iota. Instead, TOS invited its friend Chronic Migraine to visit. Like an uninvited and oblivious guest, chronic migraine has over stayed its welcome and tortures me on a daily basis. 

Chronic migraine is a condition that baffles even specialists and neurologists. They don't know what causes it, why it happens, who it will strike, and when it will go away. All they know is that diagnostic tests are useless and medication is trial and (mostly) error. It's been years since I've woken from a nights sleep without a severe headache. These headaches are accompanied by nausea, vomiting, disorientation, numbness/tingling in my face, and my new favorite (sarcasm font needed) symptom loss of consciousness. Yes, that's right I pass out with little to no warning whether I'm actively engaged in an activity or laying down. I spend most of my days in s darkened bedroom (black out shades, doors shut, and no lights even seeping under the door cracks). When I am able to be out and about, I still wear dark sunglasses and walk a bit unsteadily. I'm not allowed by good conscience to drive since I frequently (as in daily) pass out. Even a trip to Church for Sunday Mass is often out of the realm of possibility for me. 

It's hard to live life this way. There are some days that I almost wish I could have been strong enough to refuse treatment, give Rachel life, and let the cancer take me... However, I then look at my little family of 4 and see that I'm still needed and wanted. I still school my children-Simon is 10 and in 5th grade, Rachel is 8 and in 4th grade. My husband, Andrew, still works on cars and needs me as his 'Dumbo feather'. This year he and I will have been married for 11 years! We've made it through things that some couples never see and we still love each other and stick together. 

Rachel and I have been lucky enough to have a benefactor that bought us a horse to enjoy (more on this story at a later date). Rachel couldn't have a regular horse because of her life-threatening allergy to horses, but loves them very much. So I researched and found that American Bashkir Curly Horses are hypoallergenic. And, since horses are like potato chips in that you can't have just one, we now have a second Curly to keep our first company. Rachel is doing wonderfully learning to ride her horse, appropriately named Faith. I can only cautiously ride for a few minutes to demonstrate something for her, but those few moments are moments of true freedom and joy. 


All in all, even though life is still full of lemons, I'm learning to make lemonade, lemon tarts, lemon meringue, basically anything out of the lemons life hands me. 

4 comments:

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  2. WHAT A GREAT MIRACLE THAT I HAVE EVER SEE IN MY LIFE. My names are Clara David I’m a citizen of USA, My younger sister was sicking of breast cancer and her name is Sandra David I and my family have taking her to all kind of hospital in USA still yet no good result. I decided to make search for cancer cure so that was how I find a lady called peter Lizzy she was testifying  to the world about the goodness of a herbal man who has the roots and herbs to cure all kind of disease and the herbal man email was there. So I decided to contact the herbal man @herbalist_sakura for my younger sister help to cure her breast cancer. I contacted him and told him my problem he told me that I should not worry that my sister cancer will be cure, he told me that there is a medicine that he is going to give me that I will cook it and give it to my sister to drink for one week, so I ask how can I receive the cure that I am in USA, he told me That I will pay for the delivery service. The courier service can transport it to me so he told me the amount I will pay, so my dad paid for the delivery fee. two days later I receive the cure from the courier service so I used it as the herbal man instructed me to, before the week complete my sister cancer was healed and it was like a dream to me not knowing that it was physical I and my family were very happy about the miracle of Doctor so my dad wanted to pay him 5 million us dollars the herbal man did not accept the offer from my dad, but I don't know why he didn't accept the offer, he only say that I should tell the world about him and his miracle he perform so am now here to tell the world about him if you or your relative is having any kind of disease that you can't get from the hospital please contact dr.sakuraspellalter@gmail.com or whats app him +2348110114739  you can follow him up on Instagram @herbalist_sakura for the cure, he will help you out with the problem. And if you need more information about the doctor you can mail me davidclara223@gmail.com 

    ReplyDelete
  3. WHAT A GREAT MIRACLE THAT I HAVE EVER SEE IN MY LIFE. My names are Clara David I’m a citizen of USA, My younger sister was sicking of breast cancer and her name is Sandra David I and my family have taking her to all kind of hospital in USA still yet no good result. I decided to search for cancer cure so that was how I found a lady called Peter Lizzy. She was testifying  to the world about the goodness of a herbal man who has the roots and herbs to cure all kinds of disease and the herbal man's email was there. So I decided to contact the herbal man @herbalist_dr_sakura for my younger sister's help to cure her breast cancer. I contacted him and told him my problem he told me that I should not worry that my sister cancer will be cure, he told me that there is a medicine that he is going to give me that I will cook it and give it to my sister to drink for one week, so I ask how can I receive the cure that I am in USA, he told me That I will pay for the delivery service. The courier service can transport it to me so he told me the amount I will pay, so my dad paid for the delivery fee. two days later I receive the cure from the courier service so I used it as the herbal man instructed me to, before the week complete my sister cancer was healed and it was like a dream to me not knowing that it was physical I and my family were very happy about the miracle of Doctor so my dad wanted to pay him 5 million us dollars the herbal man did not accept the offer from my dad, but I don't know why he didn't accept the offer, he only say that I should tell the world about him and his miracle he perform so am now here to tell the world about him if you or your relative is having any kind of disease that you can't get from the hospital please contact dr.sakuraspellalter@gmail.com or WhatsApp him +2348110114739  you can follow him up on Instagram @herbalist_dr_sakura visit his website     https://drsakurahealthclinic.wixsite.com/website https://sites.google.com/view/herbalistsakura                               https://drsakuraspellcentre.blogspot.com/                 https://drsakuraspellalter.wordpress.com/         for the cure, he will help you out with the problem. And if you need more information about the doctor you can mail me    davidclara223@gmail.com

    ReplyDelete
  4. Hi Erika!
    I'm a priest near Louisville, KY, and have a parishioner who has stage 4 cancer and is pregnant. Is there any advice you have for me to help her? Any medical people I should connect her with?
    Thank you for sharing your story!
    Fr. Robert email: fr.robert@iclagrange.org

    ReplyDelete

My Chemo-Jane hair-style

My Chemo-Jane hair-style
I just had to have my mom buzz my hair because it was falling out so badly.

Pre-op wearing my hand-crocheted cap with my prayer shawl.

Pre-op wearing my hand-crocheted cap with my prayer shawl.
My loving husband is watching me distract myself with a game on his iPhone.

2 days after my BMX w/ 100ccs in the TEs

2 days after my BMX w/ 100ccs in the TEs
I even have a fashionable belt to hold up my drains.

3 weeks post-op w/ 400ccs in each TE

3 weeks post-op w/ 400ccs in each TE
The smile is fake because the TEs were irritating!