I wrote this during a spat of insomnia at 6:28am after not sleeping the week after I got out of the hospital. It was January 7, 2015, but finally getting around to posting this.
No one is ready for a new year more than me, I’ve spent the better part of the last 6 months in and out of hospitals, doctors and specialists, trying to figure out what is wrong with me. I’ve tip-toed the thin line between what I want and need to share with people because I often don’t even know the answers myself. But here’s what I do know, in an effort to update those that have cared & asked:
I started off thinking I was exhausted. I had just gotten over a busy period at work, followed by a strenuous trip to Europe. I thought that once by body caught up on rest, that’d I’d feel better. I remember saying over the 4th of July weekend that I wasn’t drinking because I wasn’t feeling well. As I kept trying to live a normal life, I kept not getting better. Just kept thinking once I slowed down, I’d feel 100% again.
It was surprisingly easy for me to seemingly ‘slip off the grid”. I soldiered my way through work, social obligations and occasions, almost willing myself into feeling better. Some of my very good friends only found out anything was wrong with me when I reached out for prayers during a recent hospital stint. Some are probably only getting their first details as they read now. At one time, I thoughts It’d be simple – I’d see my doctor, they’d diagnose me, I’d get a pill, I’d be cured. I now know that’s not the case. My doctor told me a while ago that if they cured me in 2 years, he’d consider it a success. It’s why I have such a hard time explaining to people when they ask me if I’m better. It is such an up and down for me – one day, I’m great and you’d have no idea anything is the matter. The next day, I’m barely a functioning human being and can’t even walk.
That’s been one of the hardest parts – barely feeling like myself anymore. Not to mention the extreme and fluctuating symptoms – dizziness, vomiting, nausea, heart burn, weight loss. I’ve been on various antibiotics for over 6 months, but still with no relief. I know I’m para-phrasing – that’s not the whole story, for sake of length of this post (and TMI). Some things I’ve figured out…
- I’ve known since middle school that I am a diabetic, although potentially the worst diabetic in the world. Friends I’ve known for 10+ years don’t know I’m diabetic because I haven’t put staying healthy at the forefront of my life. Diabetes has taken its toll on my nervous system. I’m sure you’ve heard of diabetics losing their limbs or eye sight, but it also affects all one’s organs – they cannot work if they cannot feel.
- One definite diagnosis is gastro-paresis – the damaged nerves in my stomach are causing it to digest at only about a 35% rate. There was one point where I was throwing up every day for months. Since my doctors and I have figured out the cause – meds have helped, thank God. It’s still a work in progress – figuring out what works and what hasn’t. I’ve had to drastically manipulate my diet – it’s hard. I am only a few days in & I am already in over my head. I don’t know how I can maintain this forever. Hopefully a dietician can help.
- My blood pressure is dropping significantly when I sit, stand or walk. This has been making me really weak & dizzy and making it hard for me to walk. We’ve tried meds but have had no relief yet on this front. Not even sure why it’s happening. I’d actually say I have been getting worse. I used to be able to brace myself and sit down when feeling weak, but I can’t always tell anymore. I’ve passed out unexpectedly a few times and that is really the scariest part. This makes it the hardest for me to function. I’ve been seeing a neurologist, a hematologist, and endocrinologist, a urologist, an allergist, and an acupuncturist in addition to my general physician. Next up is a naturopath & a specialist at Rush for dysautonomia.
- There’s something missing. A piece of the puzzle we haven’t figured out yet. I appreciate the continued prayers for answers and healing. As always, I am open to any ideas or input. I half write this with hopes that it reminds anyone reading it of an article they read or a friend they know with similar symptoms. I am open to hearing it all and trying almost anything. I continue to attempt at keeping life as normal as possible, seeing friends when I feel well, staying humorous as much as I can. I traveled for the first time in a while this past weekend. Was great to get out of the Chicago cold & see my ASU friends. The travel attempt was a little too pre-mature on my part. I’m still not well enough to be traveling for a while. I had some great, fun hours & some miserable ones.
I will get better once we figure everything out. Just hoping it comes sooner than later. Thanks for the thoughts, prayers and kind words of encouragement. I am blown away by the love and support from the people who have reached out to me – everyone from those I love, to those I barely know. It has been great to hear from everyone and I feel truly grateful to have everyone in my life.
|Gotta have it|