A flashback to simpler times

Good evening,

I spent some time over the last few days thinking about 2005 and earlier, which was the time before my health crashed on me. Daily life was so EASY for me back then. While there were the ups and downs of life, I had the energy to handle them. Here are a couple of the pictures that came to mind of the fun and carefree times.

Dancin' at my sister's wedding

(July, 2002--about 3 months before our own wedding)

My sisters and I goofing around (totally sober!) at our parents' lakehouse

Summer of either 2004 or 2005

I think I'll always come with a warning label from now on (actually, I literally will because the Hematology folks told me to get a Med ID bracelet!), but I'm heading back towards these times. Not sure that I'll ever look like my former athletic self again, but I'm certainly bringing back the smile and controlled-crazy fun for round two!

Who's with me?

-S

My new full time job

I half-joked in a previous post about becoming a professional patient, but it looks like that is what I am now after today's PT appointment. My instructions are to take a bath every morning, complete my hour of physcial therapy exercises, and then take a 45 minute walk. Seeing as it takes me FOREVER to get out of bed and get ready in the morning, it is going to be the afternoon by the time I complete all of this each day...not to mention the 2x per week appointments. I really don't mind...my only complaints about this new job are the pay and the repetitiveness. :)

Otherwise, I was pretty bummed because I was planning to dive headfirst back into my previous workout regimen. Today I was told I can't because it can cause the muscle to spasm again and undo all of my therapy. I was a crazy ball of energy growing up---always outside running around, riding my bike, roller skating, hula-hooping, playing tag, playing soccer or basketball or badminton or volleyball...anything athletic. Not that I was necessarily good at any or all of these things, but I've always led an active lifestyle and that changed about 6 years ago when all of my health problems showed up. I was told that I can get there eventually, but that I have to start slowly with low-weight upper body exercises and brisk walking. How boring is that? I'm not good at small steps, but I have to learn to take them this time. Blah. It is what it is. I'll get there!

-S

Need to get that schedule thing down

Greetings!

I'm still trying to figure out how to not have a job. I know, it sounds weird. I was so organized at work that I totally forgot that being organized isn't really in my personality. For example, today I was picking up some things in the living room when I realized that I wanted to grab an underbed storage bag to store some Wii stuff. The next thing I noticed was that it was two hours later and I had half a crocheted headband done, clean dishes, a dozen hard-boiled eggs, and was parked in front of the stand mixer making banana bread. I'm not even sure how I got distracted, especially since the kitchen is not on the way to where I had an extra underbed storage bag AND I had no plans to make banana bread today. In the end, I got a lot done and I managed to take it easy like I need to do. In the future I think I'm going to write down the must-dos and then see what else happens throughout the day.

As for my happy day and knowing what is wrong with me...well, that is still fabulous! The big thing to remember though is that knowing does not mean that I'm instantly better. I have weeks of physical therapy ahead of me and I may never be back to 100%, so I'm preparing for that. Keep your hopes up for me please!

It's a short one today...I'm exhausted from all the things I did today!

-S

Yes, it's definitely muscular

This is the day the Lord has made, let us rejoice and be glad in it ~ Psalms 118:24

Tuesday, April 13th is going to be a memorable day in my personal history. I went to a new physical therapist who was able to prove to me without a doubt that the cause of my pain is a severe muscle spasm of my pelvic floor muscles. It's all pretty graphic, so I'm going to leave it at that since this IS the internet. But--between the daily at-home exercises and twice per week sessions I should be feeling so much better within a few weeks!

I can't even describe the emotions behind finding the cause of this pain that has not just controlled, but CONSUMED my life for the last 8 months and at other intervals throughout the last 1o years. I called my husband before I even got to my car to leave the appointment. I was crying happy tears because I finally know what is causing my pain. I was crying sad and angry tears because the answer was so simple and no one figured it out. I was crying tears of relief because one doctor told me point-blank that I was imagining the pain. There were so many moments that I quietly thought I might just be crazy and now I know without a doubt that this is real.

All in all, this time off will be great for me. So far, I've been consumed with appointments, exercises, school. cleaning, cooking, etc. But I'm really different now, at least for the moment. I'm not tackling everything at once, but really allowing myself to take time to de-stress. My sister summed it up nicely when she told me to find a routine but not put myself on a schedule. So, that has become my new mantra.

In the meantime, I'm making time to enjoy life to the fullest degree possible in my current condition (which includes other health issues). But, I can spend a couple of hours at the zoo with my sister and nephews (did it yesterday), enjoy dinner with friends or family, take a walk, watch a movie, go bowling, be crafty, play cards, etc. etc...I am lucky to have friends and family that are so understanding of the fact that my life has to be at a different pace and they roll with it. Luv u guys! So, for anyone else out there that is up for low-key and boring things, let me know and I'm there!

-S

My first days of unemployment

Hello!

The fact that I am not working is finally starting to sink in. As an admitted workaholic, I totally expected to have a moment where I'm going to break down, call my boss and beg for my job back. But, to my surprise, that isn't going to happen. I KNOW without a doubt that I made the right decision. There is still a degree of sadness and fear because I left a company where I've been working for 12 years and I know that it is very unlikely that I will go back. However, it is nice to know that I can still see the people that I want to see, and that the times that I do see them will be spent catching up and having fun, instead of stressing about some impossible deadline that is looming.

Monday was just another day to me because it was the Brewers Opening Day. I got to tailgate with my friends, two of which I worked with, and enjoy the game. Unfortunately, I was in really, really rough shape through a few innings, and the fact that I wasn't feeling great really showed in almost all of the pictures from that day. But, I've come to love baseball in the last few years and I'm really excited that the season is kicking off.

Yesterday was interesting because it was my first "real" day off. I had a doctor's appt in the morning, and then I had to rush to finish two papers that were due by noon. After that, I decided to go to the pharmacy to fill my new prescriptiosn from the doctor visit and then the library to look for movies and a book to read. Turns out, almost EVERYONE in Milton fills prescriptions on Tuesday afternoon. The problem is that the demographics in the afternoon are really sick people picking up anti-biotics and the retired crew who have a MILLION questions. So, I think I'll resume my 5pm trips to the pharmacy from now on. From there, it turns out that every single unemployed or maybe third shift person in Janesville is at the library on Tuesday afternoons as well. I saw several people with a cart full of 20 movies, which explains why I can never find the movies that I want to see!

Anyway, I picked out three movies and then wanted to find a nice novel to read. Since I've only read a handful of books for fun in the last four years, I had no idea what to look for. So, I wandered for awhile. Before I knew it, I was standing in the business section. The books were things like starting a business, management techniques, financial management, etc. My wild ideas of starting my own business quickly found there way to the front of my brain. I quickly snapped back to reality and remembered that I can't be doing this right now--I need to take some time for myself!!! So, I made my way back to the new non-fiction section and found a great looking murder-suspense novel (my favorite kind of read!), and checked out behind someone with a cart full of at least 30 movies! Why aren't there limits? Seriously!

Today was pretty much a waste. I tried my new muscle relaxers that are supposed to help me sleep. I took the prescribed dose of two at bedtime around 10pm and was annoyed that I was still awake at 11:30. The next thing I new, it was 7:30am and my hubby was leaving for work. I made some comment about sleeping in, and then the next thing I knew...I woke up at 12:45!!!!! I sprung out of bed and realized that I was completely uncoordinated and out of it. It's 4:15 right now and I'm STILL trying to wake up and stop running into things. I'm afraid to try and walk out to the mailbox because my driveway is steep and I don't want to fall off the edge into the wooded area. I think half a dose will be appropriate tonight!

The rest of my afternoon and evening will be filled with the glam task of doing laundry. I'm so happy that I can start to take the load off of my hubby. The poor guy has had to manage absolutely everything in the household, plus stress over my health, so I am soooo happy to be able to start taking some of the burden off of him.

Peace out!
-S

Diagnosis/End of an Era/Free time does not mean progress on the health front

It's a long title, I know. But there are many things happening at this very moment.

First and foremost, I had my scary hematology appointment last week. I have type I Von Willebrand disease. It's actually not that big of a deal. Thank God. Unfortunately, it has nothing to do with my pain. I guess if you dig in far enough, you can find a laundry list of problems with anyone, but my list is getting very long.

This might be the most bittersweet day that I will have in my entire life. Here is why:

Today was my last day with the company I've worked at for the last 12 years. Wow, was that a tough day! I planned to go out quietly, but over the course of the day I received flowers, e-mails, messages, an Edible Arrangements basket and a potluck lunch that I was not expecting! While it was sad, I know that it is the right decision for me and I am thrilled to be starting the next chapter.

Sadly, I'm already experiencing the third title to this post. Free time does not mean progress on the health front. I had a nerve block last week and it only gave me minimal relief. Unfortunately, I'm having trouble dealing with the pain clinic. Great doctor--terrible administrative processes, and a nurse who might be good at nursing but is terrible at listening. I have to handle my growing list of complaints carefully because they can refuse to treat me altogether, which means I would be on a long waitlist to get into another clinic and that would be even worse than terrible treatment. So, I proceed with caution. I'm stuck in a boat of having all the free time in the world that is dedicated solely to getting myself well, but I am without a doctor who will make the time to figure out what is wrong with me or ensure that I am comfortable during the journey.

So, with all of this...I can honestly say that I never really understood the meaning of bittersweet until now.

Thank goodness I have my faith to carry me through this mess!

-S