It was 2001 and I was staring at the ceiling tiles of my local hospital, only 20 years old. Admitted for dehydration once again. The nurses kept switching blood pressure machines "65/40 that cant be right, hold on". I've done this song and dance before. Another random doctor orders another "complete blood panel" and says "youre fine, go home". I wasn't fine. I was sick, and had been for some time. My face was gaunt, blackened eyes, super thin 95 pounds, very tired. I'd seen many doctors and finally this new guy says "you're depressed". Now Im not a crier people, Im not a complainer, but if Im mad I will cry. "Im not depressed damnit, I waitress, I take 21 college credits, I like my life, Im happy, I just cant move at times, IM HAPPY" as im crying he handed me the prozac slip......Great...
My cousin was working in California in an ER. He plugged in my symptoms (low blood pressure, low energy, periods of blackout) and 9 med files came up. He sent them over in an email and said "good luck". I skimmed through them all, nope, nope, nope, nope, nope, nope, file #7 Addisons disease. The skies opened and angels sang. That was me. I called a local Endo and said I needed in right away, they declined new patients. I called again the next day and got a different secretary "I just moved here from out of state and I need a dr in AZ to prescribe for my Addisons disease, and Im almost out". They got me in the next day. She ordered blood work that day at the local Quest. The Dr at scottsdale healthcare walked in with my results and said "so whos the Dr who diagnosed you but didnt give you the right meds?" Well, umm i havent really had a proper diagnosis..... "Addisons disease, and your lucky to be alive, I will get you on cortisol and florinef right now, and you need a gravity test at a cardiologist for the fainting". If I had the energy I would have kissed that man, and tigger bounced my way out. But I was tired, I laid back down on the gurney table. (Take that you jerk doctors with my middle finger waving in the air, I told you I was happy, IM HAPPY).
So basically Addisons means I dont make any cortisol, nor proper adrenaline, and that can screw with your blood pressure, fight or flight response, any stress can cause major damage. JFK had addisons and he was a prolific president, and he handled Marilyn Monroe, so Im good with that. A good medical bed fellow to have (pun intended).
A year prior to my diagnosis I was working as a secretary to a mom/pop corporate training company. I answered phones, set appointments, ran to get groceries, balanced their accounting. Every 3-4 months I would come across some hospital bills for "OB GYN Emergency room". I must have stared at one too long one day. "Yeah we keep trying, we just cant keep one after the first trimester". I wanted to die. I wanted to die for her.... Ive never had a large group of friends, im not a people collector. I think its my safety net. I physically felt ill. My heart was broken. That following Monday I walked into the office.... "So how about egg donation?"....... My boss smiled "we are finalizing an adoption, but if you want too we had a company lined up". So I became an egg donor. Some lawyer and his teacher wife have twins in Nevada the same age as my oldest daughter. Last I heard they had 15 more on ice so I could have a whole gaggle out there. I did it to be selfish, I did it because I couldn't get the medical bills out of my mind.....nor her face when I found out....I did it for the teacher who I never met, but who called every day to make sure I was "for real", because her only dream was to be a mother, who was terrified shed have a broken heart.......
So the gravity test the dr mentioned got lined up. Some young nurse sat on the other side of the glass, I was the lab rat.... four hours had passed, her voice came over "Now this is the last stage, you may feel some IV fluid and another tilt upward...." thats all I remember. Next thing I know she was over my gurney and I was back to flat.... "Doctor it was positive, its positive" she yelled. The cardiologist came in and took a manual Blood pressure, "you back with us, you broke my pressure machine?". He was a cute doctor, young.... "Im guessing positive isnt such a good thing then Dr".... "No not exactly". So we spoke options, apparently my heart was over compensating for my lack of adrenaline and telling my body to speed up or "fight or flight" when I didnt need too, so I was resting at 125. Only problem was your heart muscles get tired, enlarged even.... and I would hit 180 at a walk, then 60 the very next beat. "You are only 20, lets try medicines before surgery, you don't want a scar". I was young, beautiful, smart, I had a waist! I did not want a scar. So beta blockers and digoxen it was, lets roll.
So you know what happens next. Girl meets boy, works at a child crisis center, girl marries boy, does foster care, become legal kidnappers, nab four kids, and thats it.....Kind of. Im still debating this last part with Jesus, because I did not know high fives can make babies. We had four really tough kiddos, and I dont recall alot of "mommy daddy time" leading up to my epiphany over a taco bell gordita. My friend had finally left a really bad relationship and I had been helping her move stuff to her moms, sitting in the pain of the moment, my heart was broken. Another friend delivered us much needed comfort food and as I looked up at my two girlfriends I said "im pretty sure I missed my period". So I got a test. It was a faint line, didnt count. So I sent Kevin out. He took theo (age 4 at the time with a lisp). Kevin bought four different types. I think he had Theo tell the check out person "we're testing for babies" or more likely "my moms knocked up". But you get the picture. Kevin thought I was nuts, I mean 7 years had passed and I never had a scare (always took my pill). Left to right they read (plus sign, two lines, smily face, and pregnant). "Damnit Kevin" (actual phrase). Dont get me wrong I love my little baby boy, but Im not the women who says pregnancy is beautiful. Its an alien invasion. They literally feast on your blood supply, and he doubled my heart blood volume. Preeclampsia. But there he was at a six week sonogram, a gummy bear, with swirly threads and a tadpole face. It wasnt fun, but he came emergency C section at 38 weeks and hasnt stopped smiling since. But by definition an alien invader, a cute one, but still, you get my point.
I counted heads one day, seven. Five kids by thirty..... How did this happen.... Maybe time for a checkup on the heart. I found a local doctor and took in that tilt test. "Do I have to do that test again, it wasnt fun". With a smirk the doctor replied "This isnt a test you can pass, once you failed it no need to do it again, so what do you want to do about it". I told him I wanted a pacemaker now, I forget my meds, Im busy, and my 30 pound baby makes me dizzy to lift, so I just want it for the sudden rate drops. "You know you will have a scar right?" I wanted to pull my waist band down and show him my C section scar with that little poof of fatty skin above it that sits numb like jell-o, the numb muffin top that never goes away, but as you all know Im a lady. "Yeah im good with scars, the whole working heart thing would be nice". So he agreed. I went in for my two week follow up and the rep yelled out for the doctor to "see this". "So Morgan the green is when we have to take over your function and purple is you".... "Im seeing alot of green doc"..... Medtronic rep said "us too, thats heartblock, we didnt know you had that". So I have a broken heart. The top part doesnt like to talk to the bottom part in synch, and my AV node is terrible. They both looked at me for a response, expecting tears, "well lets crank this sucker up to 80 already". I have to take Jace in this week for his own evaluation since heartblock is passed to fetus, and with an existing autoimmune disorder like Addisons his chances increase. But this kids German, hes tough. I hope he gets my heart, sarcasm, empathy. I hope he gets his dads cardiac function and health.
My friend had a really rough time with her child the same day I got the heartblock news. Its hard raising special needs kids. Its harder when they are one way in public and another at home. God forbid we ever say or think "today I dont like being a mom". Judgement compounded with illness is terrible pain. I couldnt sleep over it, my heart was broken. The next morning I had to call the egg donation to update my "offspring" file. Weird call to make, trying not to sound like a psychopath hunting down DNA from a former hasty decision that I regretted, or somehow needing my old eggs back. "OK so I have five kids, so Im not needing anymore" I think thats a good ice breaker. I updated the nurse and she said she would "try to locate the file". OK thanks, tell them "im sorry for the scare and Im sure they are fine". I feel like I should offer a refund, like "sorry for my crappy eggs", I will never know if they find out, my heart is broken.
Bryce came over to me yesterday and laid his little hand on my scar and said "Hey mom whats that". "Just a battery for my heart, im kind of a big deal, like a robot"..... "Mom thats cool". My baby needed a specific medicine we drove around all night for last night. The fourth CVS had one bottle left, as I left the alarm system went off. "Thats odd, youre fine" the clerk said, waving me out. I got in the car and told Kevin the bottle set the alarm off..... "No your pacemaker did"...... We couldnt stop laughing, probably since it was true. Robots are cousins to zombies anyway so we better be looking out.
Mothers day will be here soon and a women across the country will write me a thank you letter and ask how "the kids" are doing. I will respond with kindness and generalities, using foreign names that they no longer go by. I will open five mothers' day cards. For a brief moment I will stare off and my heart will be broken, its a life she will never even aspire to dream for, I live a life many pray to have. However many things come my way I know one thing I got for sure, a perfect heart...
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