We're on Medical Leave
Most Recent UPDATE: 12/07/2015
Hm. How to even start this...
The site is my full-time job; it’s a business. That makes me feel like there should be some kind of barrier between my professional and personal life. At the same time, the business is small, just me, and I put a lot of myself into my work.
With that in mind, I made the decision to jump whatever personal-professional barrier I had and publish something on the site to let you know what's happening.
It'd be easier to work through this in private but the truth is, it’s affecting my company and I don't have the luxury of employees or a biz partner to answer the questions that come in and keep things running smoothly. It weighs on me that people are waiting for me to answer and I am not interactive like I normally am.
I will get to all the questions, FB messages, and comments that have come in once I feel better, I promise.
On September 22nd, I was taken to the emergency room after paramedics did some tests that revealed I was having stroke-like symptoms.
I had an intense visit to the ER, where a CT scan and a very wonderful group of doctors/nurses/neurologists determined I was not having a stroke (whew!). That was great news; however, it is still a mystery what is causing my numbness, muscle weakness, and a plethora of other maladies. I am undergoing lots of tests and pokes and pricks in the hope we can find the underlying problem.
While this has all been a whirlwind that has changed my lifestyle considerably, it has been a process.I have been having leg pain for quite some time and severe leg pain since the beginning of September that has made sleeping very difficult.
When my legs went numb on September 20th, I was relieved. I could sleep and I was not in pain. By Monday, the tingling moved to my arm; by evening, it was moving into the right side of my face. That’s when the nurses recommended I call the ambulance.
Let me just say, that was traumatic. Well, traumatic for everyone except Rigel, who greeted the paramedics with loads of excitement and was insistent that all should hear (and feel) his new squeaky owl. :)
How it's Affecting Things
For the site, the only thing that's really affected is I'm not able to interact on a one-on-one basis like I was when I was healthy. I can't do phone calls or help answer your questions about the travel industry at this point in time.
Please, still write reviews and read 'til your heart's content; the site is still a resource, just not as interactive.
So, why can't I help out? It has been impossible to operate at a normal capacity. I am not able to work... or do much of anything, really.
I'm weak and tire easily. I spend most of my days resting. It’s hard going from being a very active person to one that—when the symptoms are bad—has needed help walking and lifting things.
This has been an emotional roller coaster. I never know what the day will bring. Some days the numbness is quieter, and that can result in painful legs, making sleep impossible. Some days the pain is gone, replaced by tingling and extreme weakness. There are days my muscles seem non-existent. I've woken up and can hardly stand, yet alone walk.
Some moments are better than others. Others have been very hard. But I know that I will get through it; I just need a little time to focus on my health.
Things will get better.
The past few days I've been able to shuffle about and I've been trying to leave the house a little. The doc has some new tests that will hopefully give some answers. I try to take a walk to get some exercise. My lovely (and patient) friends accompany me as I shuffle at a turtle's pace a few blocks.
It feels great to be outside and to be able to move about, however slow.
Please know that I still care very much about the site despite my lack of interaction. I want so badly to help answer the questions that come in and for things to be normal, but I need to make my health a priority and listen to my body at this point in time. And really, all my body can do right now is cause funny sensations and rest.
Thank you for your support and patience as I work towards feeling better. This is not a great situation, but I am still lucky in many ways. I am so thankful that I can walk and stand again. I feel so very fortunate to have an amazing group of friends and family that have been bringing me to appointments, cooking for me, and taking care of Rygy (and me). I know that not everyone has that and I am so, so grateful.
I can't wait to be back.
Update: February 10, 2015
Holy smokes. What a ride this had been!
The doctors are still trying to figure out what's wrong with me. I'm proving a tough case to figure out. So here's the scoop, my muscles/nerves are finicky and unpredictable. Walking often feels like I'm walking through the thickest honey possible. It's exhausting. Couple that with my skin can feel like I'm doused in menthol and someone has stood me in front of a fan. Blech!
To give you an idea, here's a few quirky snapshots of life as of late:
- Last month I went on a 20-minute walk alone! (I can't really go places alone now because my body isn't strong enough.) It felt so freeing... until my legs got all jello-y and I had to call in reinforcements. "Where to?", the cab driver asked. "Four blocks away," I answered.
- I went grocery shopping and cooked dinner for the first time last week!!! I'm still laying in bed wondering if I'd do it again if I knew it'd take five days to recover. Jury is still out, that salad was darn good. :)
- I now have an alter ego, Robo Steph. It's for when I walk around and have ice packs strapped to every limb.
I have times I can walk and have more strength. Then, moments later, my phone is too heavy to hold; typing feels like I'm doing wrist curls with 50 lb weights (?!?). It can be quite frustrating... and very, very humbling.
The little energy burst is (I think) due to some new meds the docs are trying to see if they can get my "flare ups" under control and stabilize my mystery illness, which I've lovingly named Steph Syndrome. I've got my fingers crossed I'll be back soon. I'll be much wiser and with the enthusiasm of a girl pent up in her body for 5 months!! Watch out, world. :)
Update: March 30, 2015
Well, I think we must be getting closer. After all, we've scratched about everything off the list, so how much more can there be? :)
The meds did work great... before they pulled me off for some more testing. Unfortunately, no meds = dead Steph. The good news is, we found a drug that can help. Hopefully I can start back on them soon and we'll see the same results as last time. If that's the case, I will be back feeling almost completely normal!
Keep your fingers crossed for me!
Update: May 7, 2015
What?!? A diagnosis?!? It can't be true. Oh yes, folks. I've finally been labeled. :) My official disease is Undifferentiated Connective Tissue Disease. It's very similar to Lupus and may eventually evolve into it, sometimes it can take quite a few years to "differentiate" (*cough*, evolve) into the disease it wants. I put up a little more about what UCTD is on my FB page if you're interested in reading it. Plus, there's cute pics of me in my almost-dreads from being too weak to brush my hair!
My treatment takes up to 6 months to take effect so I'm not stable enough to work yet but hope to start easing back into things and be back full-time by the fall... maybe even sooner! Eeeeek, wouldn't that be great?!?
Huggles! See you soon! Steph
Update: July 12, 2015
Well, things are coming along. :) I've had days I've actually felt normal! I'm still unstable and can't really predict how well my body will function from day to day but the meds have definitely helped with the inability to operate and helped ease some of the pain.
Right now, I've reached the point I can run through daily tasks on my own (most days, anyhow). I can cook again, shower, and sometimes I go without a nap in the afternoon! Heck, I've even started exercising in the pool!
At this rate, I think I'm on track for being back to work this fall! Steph
Update: August 25, 2015
I'm back at work part-time! Doc says that I'm reacting quicker than most to the treatment, which was great to hear because it feels like the slowest progress ever to me.
While I am SO excited about being able to work, I also want to warn everyone that it's not your typical part-time work. I can only work when my body allows, which is frustratingly erratic. For instance, I have a few days where I feel pretty darn good and then, I can crash for a week, barely being able to get out of bed. I have no idea why. The doctors don't know why. It's just how connective tissue diseases work. Flare-ups happen and you just need to listen to your body when they happen. I used to think a flare-up meant something big and long-lasting (which it also can be) but flare-ups can also come on really quickly, knock me out so I can hardly hold up the weight of my body, and then disappear after a few hours, if I let my body rest.
This is all to say that I'm back... but still trying to get the disease under control. I really believe I will be back to my old self when all is said and done... it just might take awhile! :)
Update: September 24, 2015
Well I'll be darned. My doctor was right! The pills certainly take their time in kicking in but when they do, you feel like a super star. :) Meaning, I can do most things now!
I'm back to work full-time and busy catching up on life/work. Dusting off the cobwebs that have accumulated in my brain. You know, the usual.
While this flare up is (I think) smothered, there may be others in the future. But I'll deal with that when it comes. For now, I'm going to enjoy all the wonderful things about life, let my creative side go to town with ideas for the site, and catch up on my piles of work!
Thanks for stickin' with me. You're the best!
Update: December 7, 2015
Ugh. I had a great run in September (28 days of feeling good!!!) and unfortunately, another flare has come up that is pretty debilitating and left having trouble breathing, barely able to walk/move, and stuck in bed. :( We're working on getting it under control again and I'll be back as soon as I can.
Thank you for your patience. I'm extremely frustrated at how unpredictable this is and how I can't live my life quite the way I'd like to... for now, anyhow. I still have very every hope that I will go into remission and be back to myself!