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.
