Successful Outing with No Lupus Fall Out....I'm Learning.....

Successful Outing with No Lupus Fall Out....I'm Learning.....

I've been a bit of a hermit since I've been diagnosed.  I've been too concerned with Flare Avoidance and less with living my normal life.  I guess that's to be expected in the beginning so I'm going to cut myself some slack and say "That's OK, you had your hermit time, now it's time to figure out how to live your life".  Lupus is a weird disease.  It's different for every Lupus survivor, different triggers, different symptoms, and different levels of intensity of those symptoms, different treatments.  So each of us Lupies have to figure out what works best for ourselves. I'm still working on that and still learning. Learning about the disease as well as myself.  

So, this time of year in Southern Oregon, there is an event called Tap Walk. My Dear Husband is a homebrewer and this event is a big one for his homebrewer's club and I really wanted to go. It is an event that features 14 different brewery’s beers and tasty morsels that are paired with each brew. You are given a map and you stroll down the city streets with your beer glass from one local business to another, taste a beer, have a snack and then wonder to the next stop to try a different beer and snack.  You see the challenge?  It’s outside so there could be sun, it's not my normal food so there could be digestive backlash, and it's going to be several hours of walking so that could kick my butt for the next few days. We were also invited to a bon voyage dinner that night at a friends house who is moving to New Zealand and we won't be seeing again for a really long time, so I wanted to do that too. That's a lot for a hermit.

I tried to rest for the two days before the event, I didn't schedule anything that took any physical effort and I napped a bit. Not to be indelicate, but I also started taking stool softeners that morning to help with the potential food fall out...or lack there of. Then I dressed for the weather, it rained so it wasn't as difficult as it would have been on a really hot day.  The sun did come out though and I used my fancy black and white stripped umbrella with pink ruffles to keep the rain and the sun off, and got a lot of positive comments about my fancy parasol. That parasol is going to be my new best friend.

We finished up the Tap Walk and then went straight over to our friend’s bon voyage dinner, to eat, laugh and have a little wine.  I paced myself with the food and beverages all day to be sure I didn't do anything to extreme.  We had a lovely evening and I was beginning to get tired so we started saying our good byes. We got home about 10:00PM and went straight to bed and sleep like rocks.  Next morning I felt pretty good, no flare, daily body aches were at least at a minimum, digestion is working well enough and I wasn't completely wiped out.  I kept close to home, read books and rested the day after, but I have to say that I'm pretty proud of my first big "flare free" outing. I learned about my body, my disease, and my future.  

 I've just realized that I have to plan in advance and can't be as spontaneous and wild as I would normally have been. Having a success under my belt has helped my general outlook and I think it’s given me a feeling of control in an out of control situation. So there's that, and that's pretty dang good.

Tap Walk Shenanigans

I'ts official, I am no longer Sasquach!

I shaved my legs this morning! It's been a long time since I've been able to bend enough to do that. It's official, I am no longer Sasquach! It's the little things in life that bring joy. I'm still learning about Lupus and what it means for me. Bending is a challange some days, and others, the magic happens! I know it seems a silly thing to be tickeled about, but just think of that 3 year old self, when you finally learn to do a task all by your little self. It's a big deal! 

I just wish I could direct the Lupus symptoms to be more productive. For instance, the hair on my head is falling out at an alarming rate. I've always had a thick head of hair so you can't notice it much yet. I think I could actually build myself a cat from the hair I've left in the shower drain from this week alone! If I could just direct the Lupus to focus on leg hair loss and leave my head alone, we'd be good. But as my mother used to say "Wish in one hand and Sh@# in the other and see what one fills the fastest".

I'm just going to count my blessings and enjoy in the glory of hairless legs for the time being.  Yay me!

Leave Taking, AKA Circus Clown Dog Hoop Jumping

Leave Taking, AKA Circus Clown Dog Hoop Jumping

Today is the day I finalized the FMLA (Family Medical Leave Act) leave that I will be on for a while, as I figure out how to manage my health.  It’s a complicated process of calling the leave company who manage these things for my employer, following up with the two doctors who are stating my needs, and my boss to let him know where the process is so he know how to fill out his paperwork. The system works, it’s just a bit cumbersome at times. I feel like the little circus dog in the ruffled collar and clown hat, jumping through brightly colored hoops, and noticing that I’ve jumped through this one once already, but jumping through it again anyway, because the show must go on. I am actually extremely thankful that this hoop jumping is even possible. I didn’t even know it was an option for me.  There is a wonderful HR person who reached out to me and helped me get started on this part of my journey. There is a special place in heaven waiting for her and others like her, who is so helpful, respectful and considerate.

That said, this journey begins.  I’m still job-hunting within the same company, but that process resembles the jumping, circus clown dog, hoop shenanigans as well. But it’s worth it in the long run and I’m very willing to jump.

The part that is more difficult for me is the uncertainty. I’ve always been a planner, I plan for contingencies and fall out, I plan years in advance for things that might not happen, and it’s a thing for me. The thought of not being prepared for the next life-changing event, gives me chills.  You know, like the Zombie Apocalypse, you don’t want to be the one who didn’t plan ahead for the worst. I didn’t plan for Lupus though. However, we did plan for having a stable homestead, growing much of what we need, keeping chickens, working hard, saving a nest egg, and being as self sufficient as possible. So as the future is a little unknown, our home life is good and I have the love and support of a phenomenal man who is very glad to have me home at a decent hour for a change. He’s also glad that I’m cooking and baking while I’m home, the man is a food hound! He also takes me on walks in the evening, once the sun is low enough and encourages me to do what I need to do to be as healthy as I can. I'm blessed.

I now have the time to work in my art studio too.  So I’ve been making costumes and other things, which I put for sale on Etsy.  It doesn’t provide an income, but it covers the cost of my addiction and makes me feel productive.  I love this and will try to do more as this journey continues.  I might even break out the printing press and do some Monoprints, but I’ll have to reorganize the space in there first to make some room, perhaps today.

So, life is good.

Here is the link to my Etsy shop if you want to see what I’m up to: https://www.etsy.com/shop/DragonFlyHall?ga_search_query=red+fairy+dress&ga_search_type=handmade&ga_page=3&includes%5B0%5D=tags&includes%5B1%5D=title

The Tale of the Skunks in the Night

The Tale of the Skunks in the Night - Written this moring at about 3:00AM

So I couldn't sleep (body issues), I get up a few hours ago thinking I'll read in the living room to let Rick rest since he has to get up at 4:00am and get ready for work.  I'm sitting here in my living room, a little grumpy, when I hear some very alarming squeeling noises coming from the yard. I'm REALLY glad I didn't grab a flashlight and run out there, because Rosie the cat and I looked out the living room window, and it was two fighting skunks!!! Yes, with tails raised, scratching, biting, and squeeling....perhaps they were mating...what do I know about skunks? They finished their fighting, or wooing, and one of them must have dropped the "Skunk Bomb" because even with the windows and doors tightly closed...I can still smell it....I'm just happy all of our kitties are safely indoors. It's wild out here....even when we are normally sleeping...

I have Lupus. Now what?

I have Lupus. Now what?

So it started, with a bang about a year and a half ago.  A new boss. My position, which I loved, was eliminated. A new position, which I didn’t love, was my option. It was an hour  or an hour and 20 minutes from my house depending on the day.  I figured I could “hang by my thumbs” for a year and hope for a positive change. The boss was not helpful, the position offered no training, and expectations were high, the stress was heavy. At home, along with husband and kitties, we have the homestead work: three acres, chickens, fruit trees, small vineyard, and a big vegetable garden and along with it the summer canning. The homestead would suffer a bit, but I could do this. I’m tough, I'm Wonder Woman, I can power through and reap the reward on the other side, right? 

I had these strange headaches and body aches and I wasn’t sleeping well. Stress right? It’s a stressful job; it’s only to be expected. One morning I look in the mirror and one eye is dilated like an alien eyeball, the other like a pinprick.  I go to the Doctor and that leads to a battery of tests, brain scans, and appointments with specialists, more tests, more blood work, more appointments, and there is no answer. Huh, that’s weird, they said, go about your business. Fast forward about 6 months, symptoms are still there and new ones are coming around, hip and shoulder pain that seems to have nothing to do with muscle activity and hits willy nilly, but painful enough that my coworkers notice even though I try not to show it. Raised itchy patches on my hands, elbows and in my ears and scalp. Trying not to scratch while in meetings with important people. The alien eyeball thing happens every once in a while, sometimes with or without the migraine headache and the nausia. I’m tired, I mean bone tired, exhausted, I really want to nap, and I never nap. I power through, get it done, and do the job. Now, sometimes I can’t sleep. I’ve always been a good sleeper but not any more, but I still have to go to work on 2 hours of restless sleep, I can do this. Follow up appointments and there is an ANA blood test that is alarmingly high. The word Lupus is mentioned, not a definitive diagnosis, but really I don’t even know what Lupus is. I go home and start researching a bit, that can’t be it, I’m a power through kind of person, that can’t be me, it can’t be that bad. Then, at an event on the weekend, got a little sun, and BAM! My world changed.  My body is so sore, my neck has a hot, itchy, painful raised rash, I take a 3-hour nap in the afternoon, and can’t keep my mind on track, and I’m forgetful and not communicating well. Back to the Specialist and it’s a definitive Lupus diagnosis.  What the hell!!! It’s just stress. That can’t be right, I’m not that sick…right?

Yeah, I’m really that sick. I am fortunate, however, this crazy, invisible autoimmune disease is not attacking any of my major organs, and I’m not going into heart, lung, liver or kidney failure. But here’s the deal…. I could…If I just try and power through…the way I always do…I could.  So what now?

I’ve been learning, about Lupus, and about myself and my new challenges and limitations.  With that has come changes. Pain is everyday. Naps are becoming a new thing for me. I always saw naps as cheating, so now I cheat. I have to rethink invitations to outdoor outings or patio dining. I hate being to one to cause a kurfuffle over sitting in one place or another, now I have to be “that person”.

 Even while I now have fantasic new boss who is kind and very professional, I have, just last week, left a job that paid well, in an area where good paying jobs are hard to find. I can’t “power through” any more, I can’t buck up and make it work. That kind of thinking could kill me. I am currently “on leave” with the hopes of finding another position in the same company, perhaps closer to home or part time without the stress of my old job. But is that even out there? How do you interview for a lesser position and convince them this is really what you want and need, what they want and need, without spilling your medical history and shooting myself in the foot? Have I made a huge mistake? I just don’t know.

I’m still shy about my invisible illness, because most people look at me and think “she looks fine”, so I can hide it to a point. I haven't told a lot of people. It’s uncomfortable to talk about because I’m not Wonder Woman anymore, and I was, I really was.