Monday, August 29, 2016

A Whole New Meaning to Going the Distance

I came across my old blog today. I used to love blogging and I loved triathlon. I was going to complete a full Ironman when I turned 40... And this past Friday, I turned 41. Sadly, I have not completed an Ironman - unless I on count watching Ironman movies.

What happened? My life took its own turn and I had to follow the path. I left my law firm, got a Certificate in Nonprofit Management, and became the Senior Director of Development for a nonprofit and raised more than $1.8M in a year. I LOVED my job, my team, my nonprofit. Mr. Darcy changed jobs and despite the ridiculous number of hours he worked/works loves his job. The girls seemed happy. Life was good, no great!

Two years and 8 months ago, I woke up in the middle of the night with itchy hands and feet. I went into the bathroom and took a look. My hands and feet were about three times their normal size and hot pink. I presumed I must be having an allergic reaction, took some Benadryl and went back to bed. I woke up the next morning - still swollen, still pink and with a rash on my face. I shrugged it off and went to work because if you can endure through a triathlon, this is nothing.  Midway through the day I ended up in urgent care because people at work were flipping out. They prescribed me medication for an allergic reaction and told me to get tested for lupus. The meds did nothing so I went to my allergist who looked at my now slightly swollen feet and still somewhat pink feet, heard me tell him that as the swelling went down my joints started to hurt and were starting to hurt worse and worse. He says, "I don't know what that is, but I know it's not an allergy. You need an ANA panel run." So I get an appointment, get some bloodwork, and my ANA is high. I head to a rheumatologist, lots more bloodwork, high ANA but no lupus or anything else that has a rheumatology test for it. Meanwhile the pain and tightness spreads - not joints only but muscles too but unlike any pain I've had before. It sometimes feels like I have electricity running through my body along with the pain. Some days my skin hurts, lights are extra bright or my hearing is extra sensitive. Oh and the fatigue. Some days I wake up exhausted, others I wake up ok but in a few hours feel like I need a nap.  The doctor says for my joints its Hypermobility syndrome and gives me an anti-inflammatory which works wonders for the joint pain but doesn't touch anything else. Things get worse and worse, and stress seems to make it worse too. I try working part time but when you run a department, it doesn't really work for your employer, and to get what I have to do as part of my job, I can't work part time. The pain keeps worsening, and is never in the same exact pattern. I know I can't keep this up, but I finally have the job I love and I'm really good at it, I want to make a difference in the lives of these kids, but it's really bad and I'm starting to get forgetful from it all - pain at level 7 or more almost every day, exhaustion, falling asleep on the sofa around 6-7 every night.  The girls start asking why I don't want to hang out with them. The doctor finally tells me I have fibromyalgia. I'm not allowed to exercise unless it's walking, cycling, swimming or yoga, and only for 30-45 minutes. I start eating an anti-inflammatory diet (no sugar, no gluten, no grains other than rice, no corn, nothing processed). I lose 35 pounds. I'm walking 5 days a week for 30-45 minutes. I get 7-8 hours minimum each night. I still hurt like hell. I'm still exhausted.

And then it happens. I have to go to work because I have a big event coming but I wake up at pain level 9 and feel like I haven't slept at all. I go in anyway. I'm grumpy and crabby and in excruciating pain from head to toe. HR tries to kick me out of the office but I tell them I can't leave. The event is coming. I go in the bathroom at one point and cry (after checking no matter be else is in there) because I have to do something. It doesn't help the pain, but with some frustration out I can handle things better. I make it to 5:30 and can't think well. I drive home, pick up the kids from after care, get home and walk in the front door. Suddenly, I can't function- I hurt so bad head to toe, I don't feel like I can walk, I can't think clearly at all. My kids somehow get me to the sofa. I lay down and don't get back up. Daughter 1 cooks dinner. Daughter 2 snuggles me. The only other thing I remember is that Daughter 1 asks if chicken is the meat that's not allowed to be pink when you eat it. The next morning, my pain is a 7 and I don't remember how I got into bed or anything from the night before. I know I have to quit my job. I can't do this anymore.  I give notice though because I'm a serious professional and I'm secretly praying it will magically disappear. It doesn't.

I go to cancel a disability policy and my agent tells me I need to file a claim... I do. They deny it and insult me in the process. I end up getting a lawyer and appealing...I'm still waiting to hear. In the meantime, money gets a little tight and my mentor who helped me get my nonprofit job calls me and asks if I'll work 20 hours per week for the nonprofit leadership center. I explain about my situation and she lets me come in one day a week (some weeks not at all), and the rest from home with uber flexible hours and if I don't feel well I don't work. I try medicine... One of which causes such bad acid reflux I have to stop it and then take meds to fix my burn esophagus. Another of which we're trying to find the right dose of... The pain and exhaustion are still there but the electricity is decreased a lot.

These days going the distance is staying up until 10pm with only a short nap... But I still have a good attitude (except toward the insurance company), still love Mr Darcy and My kiddos (now 10 but still funny as ever), and I know God has a plan even with all of this. I'll try to write more often... No races will be planned. No triathlons to train for. But life will still be going on, and I'll be right there walking, napping and going the distance the best way I can.



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