The Overdue Thanks

My husband and I celebrated our one-year wedding anniversary on Tuesday, May 24th.  It was only four days later that I was admitted to the hospital.  My mother has always referred to my husband as “that poor bastard” because he seems to have the worst luck and this was no exception.  Leave it to him to get married and find out one short year later that his wife has a rare chronic disease.  He has been really lighthearted about it, though, and even joked around with my dad in the hospital asking what the return policy was on me or if he could extend his one-year warranty.  Thankfully my husband seems to be taking all of this in stride, which is good because if he was freaking out, I would be a wreck.

delayed thank yous

To my husband, thank you for feeding me, showering me, holding my water cup, fetching towels, swiping snacks from the nurses’ station, sitting with me until I fell asleep each night, and arriving early in the mornings so  I didn’t have to be alone.  You are truly my rock and I wouldn’t want anyone else by my side during this mayhem.  Thank you for your continued support, for carting me around to my numerous appointments, for taking care of dinner and for doing whatever possible to make me feel better when I’m having an off day.  There are a million things I could write here, but none of them would truly capture the gratitude I feel.  You have truly embraced our vows, “in sickness and in health”, in a way I never could have predicted.

To my mother, thank you for dropping everything on a Saturday afternoon, hopping in the car, and driving five hours to Saratoga to be by my side at the hospital.  Thank you for spending the night at the hospital and still having the energy to drive five hours back home on Sunday.  Even more so, thank you for getting in the car with dad Monday morning and making the five hour drive yet again because you found out I needed another blood transfusion.  You sat by my side the next two days offering to get me food, fanning me, tracking down nurses, and making sure I was comfortable.  Another huge thank you for staying an extra night at the hotel after I was discharged so I could relax and spend time with you.  You are truly selfless and would do anything for your children.  I feel blessed to have you as my mother.

To my mother-in-law, where do I even begin?  You 100% treat me like you would your own daughter and I can’t thank you enough for that.  You came with me to the ER and made sure to text my mother with updates so she didn’t have to worry/wonder.  You graciously bought me food, helped me pick my meals each day, and even ran to the store to grab gift cards and thank you notes for the nursing staff.  Every nurse in that hospital was sure to point out to me how lucky I got with my in-laws and they were absolutely right.  Thank you for staying late, showing up early, and relieving others of their shifts.  I only wish there was a phrase stronger than “thank you”.

To my father, thank you for driving up to Saratoga Monday morning with momma.  Thank you for being the perfect distraction while in the hospital – your sense of humor and our endless Canasta games kept me from losing my mind.  Also, thank you for driving to the store to grab me portable fans when my hot flashes started to get the best of me.  Thank you for being you.  I love you!

To my father-in-law, thank you for snagging the big fan from the nurses’ station to cool me down and for holding down the fort back at the cottage so your wife and son could focus on being at the hospital.  It certainly wasn’t the Memorial Day Weekend any of us had planned, but you went above and beyond doing laundry, cleaning the cottage, and making up beds for my mother and aunt to nap in.  Thank you for playing the gracious host and for keeping everything running smoothly behind the scenes.

To my aunt (the Nurse Practitioner), thank you for listening to my symptoms, recognizing their severity, and referring me to the ER.  Thank you for dropping everything and driving the five hours to Saratoga (and back) with my mother to be by my side.  Thank you for asking all of the right questions, explaining the medical terms and lab results to me, helping me freshen up, and chasing down nurses, snacks, and toiletries for me.  Thank you for fixing my hair, painting my toenails, and for FaceTiming me throughout the week, especially during the family Memorial Day Party.  Your constant check ins and advice have kept me sane throughout this last month and I don’t know what I would do without you.

To my coworkers/employer, thank you for helping me understand what it is I love about our company – we’re a family.  The patience, understanding, and support you have all shown me over the last month has absolutely blown me away.  Thank you to my teammates who took over some of my day-to-day responsibilities so I won’t return to a huge buildup, especially my former boss.  Thank you to our Founder & CEO who set aside time to talk to me about my condition and made sure I was getting the best care possible.  Thank you to our HR Director for chasing down IVIG approval and making sure insurance coverage was the last thing on my mind.  Thank you to our CFO who made sure my focus this last month was on healing and recovery.  Thank you for caring about my continued success and for allowing me to work from home in between treatments.  A huge thank you to my boss who checked in with me daily, kept HR/management informed of my treatments and condition, and allowed me to make recovery and rest my top priority without having to worry if I would still have a job when this was over.  And finally, to my coworkers on other teams who have kept in touch and helped wherever/whenever possible, you are the reason I miss coming to work.  You are the reason I can’t wait to get back.

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A very special thank you to all of my family, friends, and coworkers who sent flowers, get well soon cards, stuffed animals, meals, and presents.  For everyone that reached out to check on me, offered to donate blood, and prayed for my continued recovery, I love you.

The Terrifying Uncertainty

I’m not sure if I’m supposed to be going through the five stages of grief in response to a chronic diagnosis (Denial Anger Bargaining Depression Acceptance), but I’m not. I’m not even going through them a little. Since I have no outward symptoms – I look and feel fine – I spend most days completely forgetting anything is even wrong with me. How can I feel totally fine but not be?  It frightens the hell out of me that my body is attacking itself from the inside and I have no way to monitor it. It is absolutely terrifying.  

The Busy Saturday

Around 9:30 I called my insurance company to check on the status of my IVIG request. After being transferred a few times they told me that the request was made on Wednesday (not Tuesday end of day as I had thought) and it takes 2-3 business days to process and approve (Thursday, Friday, Monday). She said to call back Monday and check on the status of the request, but my guess is that the insurance company will approve it Monday and tell the doctor who will then call me asking to start on Tuesday. It’s actually better that I get a full day’s work in on Monday anyways.

At 10:30 I got a haircut.  I hadn’t had one since October!  

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I chopped my hair to shoulder length (a little past) and then went to lunch at Panera with my mother-in-law and sister-in-law. After lunch we walked from Panera to the mall entrance and my heart started fluttering. The pulse oximeter read 155+. It scared the hell out of me. Once I finally calmed down, we went into the mall to shop for a couple of hours. After being in there an hour or so I started to get very sweaty and overheated. Sweat was literally pouring off of me and running into my eyes.  I sat down in front of a fan in the changing room for ten minutes and drank some water.  Finally, my pulse returned to normal and I was able to continue shopping.

When I went to go to bed tonight, my husband’s heart was fluttering and he was having chest pains and vomiting so I took him to the ER in Milford. Luckily, everything looked normal and after a bag of IV fluids he was feeling better. The nurse and I spent most of the time talking about my condition instead. I keep forgetting the rarity and severity of my illness until I start describing it. Doctors and nurses seem fascinated by my condition, which I am not sure how to interpret.  I talk about my treatment and diagnosis so casually and openly.  It’s hard to know if I still haven’t really absorbed any of it or if I’m being optimistic for the first time in my life.  Regardless, I am glad my husband is okay.  After the month I’ve been having, it was nice to not be the one in the hospital bed.

The First Good Day this Month

I had a lot of trouble concentrating today. I anxiously awaited a call from insurance all morning approving my IVIG treatment.  Since the call never came, the earliest I will be able to start is on Tuesday.  Since I had to cancel Chicago anyways, though, Tuesday-Friday 9:00 AM-2:00 PM wouldn’t be the worst thing.

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On a happier note, today was the best day I’ve had all month.  Everything about my diagnosis has been confusing, overwhelming, and frightening, but today was wonderful.  John & I drove into the city and parked near 30 Rock to go to the taping of The Tonight Show starring Jimmy Fallon. The taping was an awesome experience and at the end we even got to high five Jimmy as he ran up the aisle during the closing credits. We watched the show when it aired tonight and you could see us on screen!  Appear on national television?  Check!  

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In addition to that, my husband and my mother-in-law gave me an early birthday present – a t-shirt blanket made from all of my old college and sorority t-shirts!  I had originally asked my husband for one back in August 2013 when we were still dating.  We had just moved in together and I thought it would make a perfect birthday present.  He never ended up doing anything with the box of shirts, though, and I started to think he never would.  It made it ten times more exciting not knowing it was happening!  It was a total and complete shock and I am absolutely in love with it.  Today was a nice change of pace!

The Overwhelming Realization

How does one find the line between cautious and paranoid?  Between enjoying life and just trying not to lose it?  I look at everything as a possible symptom. It’s hard to know what was a symptom before and what was just me. I can’t seem to tell them apart anymore and until that gets easier everything is going to appear to be a warning sign. I want to understand what my version of ordinary is going to be. What will my normal hemoglobin and platelet count be?  It certainly won’t be between 12-18. Will doctors simply be ecstatic to see a number in the double digits at all?  And how long will I be on these steroids?  These addictive, angry, sweaty, hungry, appetite-inducing steroids?!  What is commuting to work going to be like?  Can I be around people at all when my immune system is this suppressed?  Am I going to have to wear a mask?  Sometimes ignorance is bliss.

To Blog or Not to Blog?

On May 28, 2016 I went to the Emergency Room for what I thought was a minor illness.  It turned out I was very wrong.  Everything since that day has been a bit of a whirlwind of information, tests, and uncertainties.  I spent the last few days debating about whether or not to blog about my symptoms, diagnosis, and treatment because it is such a personal journey.  On the off-chance anyone else trying to cope with a chronic illness stumbles across my blog, though, I am hoping it will help to read about my experience and know you’re not alone.  Also, for all of my loving friends and family who have been a constant support system, I will try to keep this site up-to-date with my latest results and treatments so no one feels out of the loop.