Sunday, July 31, 2011

I'm Home From My Vacay! Warning-This post is kind of Deep and a Tad Bit Personal...

I got home from the beeeyoouteeful Mullet lake (trust me, the party isn't just in the pack-teeheez!) Late late late last night! Mullet lake is connected to Burt Lake through the gorgeous Indian River. Both lakes are extremely large and very deep, over 185 feet deep to be exact.

Now, I live in one of the biggest 'Tourist Areas' in Michigan so most people wonder why I'd leave here to go somewhere else when in their minds we have everything in our backyard, literally. What they don't understand is that this is HOME. I think I must have been asked by at least 15 'Trunk Slammers' (what we call tourists) why we'd go on vacation when we live HERE in this beautiful area. (The people I talked to were customers/clients being notified that we'd be out of town).

They just couldn't get it. For once, I wanted to be the 'Trunk Slammer', LOL!

This is my first vacation in just over 3 years since I was diagnosed with:
  • Full Body Reflex Sympathetic Dystrophy Syndrome
  • Generalized Dystonia
  • Torticollis-a form of Dystonia that affects my neck, it does a great Linda Blair impersonation when my neck and shoulder muscles spasm so severely that my head/neck is twisted to the point that I can look over my shoulder. It stays locked in placed, spasming and hurts something fierce. Sometimes it impairs my breathing but we've figured out that in most cases, the pain and fear cause such anxiety that I go into a panic which makes it difficult to breathe. My family and close friends all know how to do emergency tracheostomy's just in case and we have 2 kits in the house (we have a big house) and I keep one with me at all times complete with step by step instructions.
  • Tourettes (severe muscular tics in my abdomen)
  • Livedo Reticularis-currently ruling out causes-scary,
  • Severe Unstable Pernicious Anemia-unable to get my levels up to standard norms even while receiving injections every 2 weeks. I had the absolute lowest B-12 level that the lab, the Neurologist and the Gastrologist had ever seen. Again, very scary for myself and loved ones. Not sure where this is going. Its been being treated aggressively since February and I still haven't come anywhere close to the lower norms. It's frightening not knowing why the injections aren't bringing my levels up after 6 months. I have an appointment with a Hematologist in mid-August.
  • Severe Depressive Disorder
  • There are a few other 'diseases' I have-Fibromyalgia, Neuropathy, Mild Seizures (if I don't take my medications correctly), Osteoporosis, etc...

That's a lot of stuff and I don't normally talk about my health on my Blog all that much because I NEVER EVER want to be judged or pitied. What I do on my Blog has nothing to do with my health.

I was and still AM an RN, before I got sick-literally overnight, I was working on my Master's in Nursing with a clinical path that I had a few weeks left to decide on. I was heading towards University Teaching because I am an excellent teacher and it still allowed me to continue to remain in the hospital setting. I have had so many students that have passed through various health programs wherever I've worked thank me for helping them make a decision and thank me again for Teaching them with patience and respect unlike many nurses/healthcare professionals who were disrespectful or didn't/couldn't/wouldn't take the time to teach them various things. I've almost always taken on a preceptor role and was a Supervisor the last 10 years. I wasn't a sit in your office type, though. I was out in the Neuro-ICU helping wherever I was needed.

On top of that, I made home-made soap: the kind with Lye and all super fatted with yummy butters like Mango, Cocoa and Shea. I made lovely soaps with beneficial essential oils and herb/flowers. I made my own lotions, body butters and a special Nurse's Hand Cream that I trialed at my own hospital until I got it perfected! 8 hand washes before reapplying and made mostly with all organic ingredients, Honey being one of them-a great humuctant! I still get a lot of calls for my Nurses Hand Cream and try to make as much as I can when I'm feeling well.

I created my own sugar scrub that would emulsify into a lotion during the exfoliation process therefore completely eliminating the need for lotion. That was one of my biggest sellers-I used real Coffee CO2 along with Demerara Sugar and Coffee for a morning pick me up and energizer! Not only did it give you a great boost but the caffeine works wonders for any cellulite you may have.

Those were the biggest products I made, there were other things. My point I'm trying to make is that I was an incredibly busy, motivated and industrious person.
I worked full time, was in a Graduate Program, had a business on the side, kept an immaculate house and still managed to find time for friends and family to make plenty of great memories.

I loved to go out on the weekends, I love to dance and very rarely do I turn down a dare from a bestie-which always made for a good time :o] I love to go to concerts, try new things and go to new places! I rarely went anywhere where I didn't make a new friend or 5 :o]
I haven't been able to do that in a long time.

I wanted you to get a bit of a picture of who I was and what I was doing before I became ill

Now, My Vacation Adventure:

We left on Wednesday at 6 am and all of our friends were already up there since Sunday. There were around 28 of us, total along with 7 boats and some Jet-Ski's.
Everyone was tubing, skiing, generally having fun in the sun and water when we got there---I was so excited. I quickly got changed into my suit after we got our Motor home parked and settled and headed down to the beach area-Everyone stuck around that day waiting for us; usually they packed sandwiches and goodies and headed out to a designation for the day.

The first day was FanFaeryTastic!!! All my friends know I'm a fool for Hynotiq, Bailey's in my coffee and any micro-brewed Summer Ale.  Well, the big joke was that I had 3 bottles of Hypnotiq, 2 fifths of Baileys and 5 different 6 packs of various micro-brews waiting for me! One of my gal pals even brought a bunch of Seattle's Best Iced Coffee in a can with iced Baileys in a cooler. Mind you, I don't drink anymore because of my medications and my illness but the Baileys has practically no alcohol so I had some with my Iced Coffees and they were Fab! I had to dilute it with real coffee (we brought our Keurig up instead of a coffee pot) because otherwise it was way to sweet but I enjoyed it. I had some fun in the sun, did a lot of swimming which is the best exercise for my disease(s). Sat around in the shade and talked, talked and talked some more with all of my friends while the guys did their own thing.

We ate dinner and then sat around the camp fire and talked more, telling funny stories about each other from over the years, etc... Ate S'mores, cheesecake and various other goodies until I thought I would bust!
That night was the first night that I haven't woken up every hour or two. I slept through the entire night!

The next day we went out on the boat and we crossed through Mullet Lake to Indian River to Burt Lake. It was sunny and very hot, around 96 degrees. Needless to say, after about 5 hours I started to feel sick and apparently, I looked it, too. We had pulled over into a cove and everyone got off to eat sandwiches, etc... and my husband and some friends said I didn't look well but I didn't want to ruin everyones good time so I said, "No, I feel fine-Let's just sit in the shade a bit". I took a quick dip to cool off but by then, the pain was starting to get bad. Thankfully, I had the forethought to bring medication with me so I took that on the sly, sat in the shade for an hour or so, cooled off a bit and did some meditation that helps with pain.
I had to endure another 4 hours and my BFF, Laurie, knew I was in bad shape, as did my hubby and some others but I kept denying it. I hate to be the downer when everyone is having such a good time but in this case, I wish I would've said something. I caught hell for it later and gave myself hell for it, too ---Very Stupid Move, Kristi !

By the time we got back, I got to the motor home as quickly as possible. It wasn't 10 minutes before the vomiting started. All I did was dry heave for about 2 hours straight, my temp shot up but I have no idea how high and my head felt like little faeries were tap dancing on every nerve. I had heat exhaustion and was extremely dehydrated even though I was drinking a ton of water. I lay there for a couple of hours with the air-conditioning blaring, cold wash-clothes over my eyes and sipping sweet tea. Finally, I started to feel like I might pull through (J/K but I must admit, I felt pretty sick).

Most of my medications warn of being in the sun because the risk of sunburn is higher despite the amount of sunscreen I used-I used SPF- 40 all over but I wore a bikini, the stuff we used is supposed to be the 'ACTIVE' stuff, I still used it after swimming and periodically throughout the day-I STILL got sunburned! I kept my head covered with a ball cap with my pony stuck through the opening in the back.
The weather said it wasn't supposed to get any warmer than 82 degrees and with us being on the lake it should have been cooler but here in Michigan, the weather changes from minute to minute plus we have the added bonus of idiotic weather people!
It's also incredibly important for me to watch for becoming over-heated which can happen pretty quickly. It's important for me to stay in the shade, stay well-hydrated and watch for symptoms of heat exhaustion.
So, Friday I stayed in the motor home while everyone else went out. Funny thing is, I can't feel the sunburn, I have Neuropathy so I don't really feel the superficial. My stomach is really sunburned, I can see this by looking at it but I don't really feel it. It's like all of the injections I get, I can feel them but they don't hurt. I just have the sensation-that's all.
My husband hit the bone in my arm about 6 weeks ago and the only reason I knew he did was because I felt him hit something hard. His face got really red and I thought he was going to pass out, LMAO! Poor guy!  He had to sit down on the edge of the bed and all he kept saying was, "I'm so sorry, baby, I hit your bone" and "I didn't mean to hurt you" over and over for about 3 minutes until I got it through to him that I didn't feel it and it was okay, I was okay, he was okay... finally, we got the injection in but it took him about an hour to get over it. He panicked every injection after that until the last one he gave me. The needle is long, 2 inches but I swear, I really don't feel it.
My pain right now, on the other hand, is horrid. All the bouncing around in the boat was probably a bit to much for someone whose been virtually bedridden the last 9 months. The spasms are the worst, I guess, they are the kind that grip very tightly and contort whatever extremity they decide to pick on at that moment.
  • Letting Ronnie Know That I HAD ENOUGH When I Started To Feel Sick!
That's the only thing I would change!!! I still had a wonderful time. If I would have told Ronnie, our friend and the boat driver/owner that I was starting to feel bad he would've turned right around and got me back as quickly as possible. Plus, there was a cover he would've put up that would've given me the shade I needed. I didn't know about the cover and he didn't even think about it. If I had been more up-front and honest about how bad I was feeling and why, there is a good chance that I could have avoided some of, if not most, of the heat exhaustion.

I'd still probably be spasming and in pain but truthfully, I was sort of expecting that. It's a small price compared to the joy I had seeing all of my friends and the 2 days I got to spend with them.

All in All, this post was about a lot of things! It's about me finally getting to go on a vacation with a great group of people! It's about me learning a valuable lesson of WHEN to open my mouth. It's also about my illnesses and sharing them with you all. So many people have emailed me and asked, I don't mind talking about it.  If anyone out there has any of these diseases, maybe I can help them with some questions/answers they may have.
I've also included how the diseases have affected my life and that of my family. Laughing when my husband almost faints while giving me an injection seems mean but to us, it's a day in the life :o]

You may have noticed I brought up Severe Depressive Disorder-it's something I've been struggling with since I learned that I had diseases without a cure or without much hope of continuing on with what was once my hopes and dreams.
Along with Severe Pain comes Severe Depression, for many reasons. The neurotransmitters in your brain change, life changes cause added stress, loss of self and all that that entails and so so many other reasons. Severe depression can be almost as crippling as the disease process itself.
It should never go ignored or untreated.

On a happier note: Look for pictures to come! You'll even get to see me in my brand new Victoria's Secret Bikini $8.25 !!! marked down from $75.00 !!! 
Pictures of Bear Butt, my dog, lounging on the beach with his shades and Harley hat on and hubby tubin' plus lots of pics of my friends.
I'm just waiting for them to be emailed!

This post isn't meant to be a downer, it really is meant to show those that know me that thought I wouldn't be able to go, that I was able to and as a bonus, I had a lot of fun for the majority of the time.

The next time we plan a vacation or a get together, I won't miss it for fear of getting 'sick'. My worst fear was realized and guess what? I survived it! I won't let that fear hold me back any more as I did in the past.

This is a very good thing :o] I am and always will be, an optimist. One fear down!

For anyone who actually reads this, Thank-you for listening and sharing with me my very personal story. You see, this was about much more than just a vacation.



  1. Big Hugs! I don't judge or pity you at all. Life throws us these stupid curveballs. I have several medical conditions too, and every time I go somewhere new or on vaction, I have to have a plan in case I get sick.

    I'm glad you still had fun on your vacation. Thank you for sharing your story. It makes me feel more postive about our upcoming trip out to a cabin. To be honest, I've been nervous, and you just made me feel a lot better about it. :)

    ceeenndee at gmail dot com

  2. Sorry to hear about your health issues. I hope things get better for you. It sounds like you had a nice vacation over all. It's great that you have a loving family and friends to support you.

    What part of Michigan do you live? My hometown is Midland and I was born in Dearborn. I moved to Nashville in 1991. I'm actually going on a visit to Midland on Wednesday. My 25 year class reunion is this coming weekend and we're visiting with my sister for a week and a half (she still lives there).

  3. Christine,

    I'm so glad I could help. I feel your anxiety! I know I was worried about it for 2 weeks before we left doing a lot of "What if... " thinking.

    The biggest thing for me was being out in the boat, far away, getting sick and ruining everyones good time by having to come in. That actually happened only I didn't come in, I sort of stuck it out and ended up getting pretty sick.

    I spent all day today in bed and hopefully tomorrow will be a better day.

    My advice to you is don't push yourself! If you're tired or not feeling well, go rest or stop doing whatever it is you're doing that's making you feel unwell!

    Let me know how your trip goes and I'm crossing my fingers for you! I hope you have a wonderful time :o]

  4. Hey Michelle,

    I live in the Tawas/Oscoda area, right on Lake Huron.

    I worked in Saginaw at Covenant before I got sick-it used to be Saginaw General and St.Lukes and they combined to form Covenant. It's HUGE! I don't know if those changes were made before you left or not. They're connected by a 1/4 mile overhead 'Tube'.

    I'm about 1.5 hours north of Midland :o]

  5. Okay, sooooo glad you enjoyed yourself! :) Even with all the bumps in the road there, you got to get away and try to relax. And the first day you got to sleep all night! That is great! :)

    And I hope you get to do it again. I know it's a lot to get there, but to get away and relax is the best. Sorry to hear you had a few spells, but you should have said you where not doing well, and maybe you wouldn't have gotten that bad. But it's done and over. And you still had fun. ;)

  6. Kristi-
    So, you did exactly what I told you not to do! Somehow I expected that knowing you. I hope you recover quickly. And why, when I talked to you didn't you mention any of this??? I'm calling you!