Sleeping Beauty/Zombieland

Hey everyone,

I hope you all had a nice Thanksgiving. I have lots of updates to share.

First, I had my pain clinic follow up a couple of weeks ago. Thankfully, I've realized that my memory has gone down the tubes so I now carry around a journal to make sure that I document all of my appointments, as well as how I feel every day. Anyway, here's what I wrote in my journal from that visit:

Current symptoms:

• All over pain, primarily in my wrists, ankles, fingers, lower back, feet, clavicles, left shoulder, and sometimes neck
• Trouble sleeping (2-4 hours at a time max)
• Increased migraines due to lack of sleep
• extreme fatigue 3-4 days per week where I can't find the energy to do ANYTHING
• Bladder pain resurfacing

New info for Doctor:

• Joined the Y--started water walking and Aqua Zumba classes
• Found a massage therapist that specializes in fibro pain

Questions:

• What are the differences between Cymbalta and Lyrica for Fibromyalgia pain?
• Can I discontinue Gabapentin?
• Tizanadine is not effective for sleeping or pain any longer...what else can be prescribed to help me sleep/reduce stress and fatigue?
• Can I get a prescription for the Y? (so that my Health Savings Account can foot the bill)

The results:

• I was referred to a Urologist/Gynecologist, which are extremely rare and hard to get into, though I was able to get a January 27th appointment
• We decided that Cymbalta was the better of the two prescriptions for me to try for Fibromyalgia
• I have a year-long prescription for the Y. (YAY!!!!!!!!)
• I received another Percoset refill...90 pills for 30 days
• I received a prescription for Amatryptaline to help me sleep
• A DVD was on its way to me in the mail so that I could check out the recommended next step of spinal stimulation (Implantable stuff...yikes, yikes, YIKES!)

So, onto my blog title, which usually takes me forever to get to in my posts. I started Cymbalta and I have been doing almost nothing but sleeping since the day I started taking it. Every time I start getting used to it, I have to increase the dose!!!! The Amitryptaline made my sleepiness even worse, so I've stopped taking that for the moment. The kicker? I STILL can't fall asleep at night because my pelvic pain sets in during the evening and then I can't relax enough to catch my Z's until late into the night. So, while my husband somehow thinks I'm cute and Sleeping Beauty-like, the reality is that I'm a drooling, make-up free, smelly, tangled hair mess just about all of the time. Fortunately, I'm at my max dose now and I've been able to stay awake for an entire day and evening, though I haven't left the house yet because I feel like driving would be unsafe. I can't wait until next week to see if I'm feeling any better.

Until next time,

-S

Why, oh Y!

Disclaimer: I really do love going to the Y.

So, I was super-excited to go to the Aqua Zumba class this morning. This class started at 9:20 as opposed to the 12:10 class that I took on Wednesday. I rushed to get there by 9am this morning so that I could warm up in the water channel before class started. I got ready in the locker room and then walked into the pool area at about 9:10. To my dismay, I walked directly into the "Twinges in the Hinges" class that I was warned not to take. There was no way around talking to the dozen 70+ people in the area, who immediately started the chorus of, "you're way too young for this", "you're new here, aren't you?", "Oh! Someone new!", "Look how young she is!". So instead of being shy, my extroverted self came out and I said that my doctor sent me here, then proclaimed that I'm actually 73 years old as I started walking through the channel. I quickly clarified that I'm actually 32 and that I'm known for having a smart mouth. On lap two (they were all stopped and clinging to the wall for some legwork) I could literally here the game of telephone of "her doctor sent her"..."she said she's 73"..."she's new here"..."she has fibromyalgia"...and gossip as if I wasn't there. Glad that I could give them all something to talk about! In the end, many women were very nice and I was introduced to over half of them. And yes, they confirmed that the youngest person there is in their early 70's.

So, after that class ended, they all cleared out and Aqua Zumba was about to start. I looked around and once again, it was a much older crowd, but this crowd was not friendly to me at all. Not that they were unfriendly...just not friendly. I tried to make small talk a few times and it just wasn't happening. But, the workout is great and I'm not really concerned whether the people around me want to talk or not. Most of them gave up about halfway through anyway. As that group left all at once for the locker rooms, I decided to stay in the water for a bit so that I could avoid further gossip. Moral of the story??? Don't be early for Aqua Zumba on Fridays, and continue to go mid-day like I have been the rest of the week. I can't wait to be feeling well enough to use the equipment that people my age use! Also...these men and women in their 70's were having a great time, so it's a great glimpse into the future.

On another note--I've made it a day and a half without getting another migraine, and I actually fell asleep around 11:30 last night and didn't wake up until 5:30. A new record for me!!!!

Have a great weekend, everyone.

-S

It has a name...well, 2 names.

Hi,

As I often do, I left out a key detail in my last post. I was officially diagnosed with fibromyalgia-slash-myofacial pain syndrome. I'm kind of annoyed that the terms are being used interchangeably, because I feel like it would be nice to just have one diagnosis. Mostly though, it's because I would like to add only one, not two more things to my giant list of things that are wrong with me. Anyway, my primary care physician sent me the letter last week, stating she recommends one of two medications, but wants the pain clinic to treat it. But...she didn't immediately send a referral to the pain clinic. So, I got caught in the middle, making several calls and waiting a full week for action...which...was that I have to wait for an open appointment at the pain clinic. So now I have to wait until the 22nd to be seen and it's killing me because I haven't been able to sleep from the pain, which has set off a chain reaction of headaches, a horrific nosebleed, a general zombie-like state, neck and shoulder pain from being scrunched up with headaches, stress, and absolute crankiness.

Back to the Y now...

Day two was yesterday. It should have been the day before, but a migraine took that option out of the equation. Not surprisingly, I forgot my shower shoes AGAIN! yuck. Anyway, my new fibro friend pulled into the lot at the exact moment I did, which was exciting because we both knew that the time would fly by faster if we were chatting as we were water walking. We got to the pool and stepped into the current channel and quickly realized that we were going to have to walk with the current that day because the thing was cranked almost to the max. As we started walking, a woman with a "Zumba" shirt walked to the edge of the pool and asked if we would consider joining her Aqua Zumba class that was about to start because she only had 2 people and she needed 3 to do the class. So...we begrudgingly decided to check it out. Who knew that it would be so much fun! I was so fearful because I am sooooooo uncoordinated, but the great thing is that no one can see what you are doing underwater. :) I'll be back again on Friday for the earlier class.

Well, time to sign off for today. I've managed to destroy my hair in just two days in the pool, so I'm off for a haircut and a search for some kind of miracle shampoo.

Please send me your prayers and positive energy so that I may remember to bring shower shoes tomorrow.
-S

Water walking

Wow, is water walking a workout! I joined the YMCA today and spent almost an hour and a half in the current channel, a lazy river-like area of the warm water pool that is designed to be used by folks who have joint issues.

I am the first to admit that I am totally socially awkward in new situations and this was no exception. After signing up and getting my picture badge/swipe card (TERRIBLE picture), I got lost for a minute, as I do when I go almost anywhere with more than one room, while I tried to find the locker room. After almost giving up and using the completely not-private co-ed family room, and then the girls' (tween and teen) locker room, I finally remembered that the ladies locker room was a floor down...or was it up??? Anyway, I found it. Then I was instantly transported back to my Jr. High and High School days in swim class. The locker room was full of naked ladies (not like in the movies, gentlemen) and I remembered how much I hate changing into and out of swimsuits in locker rooms. So, I found a (dirty) locker, changed in the (dirty) bathroom stall and eyed up the (dirty) showers that I'd have to use after my workout. Ok, they weren't really THAT dirty, but they WERE old and I AM a germophobe. It was then that I realized that I forgot my shower/pool shoes. Dammit. So, I put my running shoes back on, grabbed my towel, locked up my stuff with my new combination lock (haven't used one of those in oh...15 years!), and headed to the pool area, which I miraculously found in just one try. Thankfully, the pool area was clean-looking and sparkly, and there was only one other person in the entire warm-water area when I got there. Showering later was rough on me...not gonna lie.

Anyway, when I walked into the current area and immediately thought, "Yikes!!!! This is going to be hard!!!!" It kind of was. There were two areas of the pool that I had to fight against every lap where the current must originate, and overall, the experience was pretty boring while I was walking by myself. Luckily, I Googled "water walking" before I got there so I knew that I should walk heel to toe, do some laps backwards, take some grapevine steps, etc, which helped pass the time. However, meeting someone else with Fibromyalgia is what really helped me pass the time.

My new Fibro friend had lots to tell me about the Y, Fibro and how she copes since she's been dealing with it for far longer than I have (She's 54 years old to my 32), and has been going to the Y for much longer. What valuable Y information did I learn? Don't take the "Twinges in the Hinges" aqua class for Fibro and Arthritis, unless you want to do small finger movements for minutes at a time, and unless I would like to be the youngest person in the class by literally 40 years. That group is made of folks in their 70's, 80's and 90's and they love to gossip according to my new friend...especially about the young ones...50's being young! So, I'm going to try a more vigorous class, but will stand in the back, just in case I can't keep up. :) Then later, she showed me the secret way back to the locker room so that I don't have to keep my id badge on me in the pool area and showed me how to use the suit dryer, which looks suspiciously like a golf ball cleaner, though bigger and automatic instead of hand-crank.

In the meantime, I'm still waiting for a call back from my pain clinic so that I can start a prescription for the Fibromyalgia. I'm hung up in the system again, so to speak, and I just don't feel like expanding on it now because I think it's at the point where a flowchart is needed to adequately explain the situation and I don't feel like pulling up Visio right now. ha.

Anyone taking bets on how sore I'm gonna be tomorrow after my first day at the Y?
-S

The anticipation alone may kill me

Hi folks,

I hope you're all still out there after my absence. I'm glad I shared my raw emotions the other day...I really don't do that very often. But, I'm SO sick of hearing stories about people being treated so poorly in that hospital. I can't even believe how great my current team of doctors has been, especially my primary care physician.

Transitioning to my blog post title now: I saw her last week because I've been having long-standing joint pain that is acting up again. I swear that I've had this pain as long as I can remember, but it's been very secondary to the chronic pain that I've been dealing with for the last few years. Anyway, I finally went to have it checked out and it looks like I'm going to be facing a diagnosis of Fibromyalgia. We're just waiting for tests to rule out Lyme disease (highly, highly unlikely), rheumatoid arthritis (very unlikely, though it is in my family), and probably something else that I can't remember. This test was done a week and a half ago and I was expecting to have the answers already. In my former clinic, I would have had to call no less than 5 times, leaving progressively more urgent messages, then get someone on the phone who would tell me that they are looking into it, and then miss the call back and have to start the process over again. They once made me wait 2 weeks to find the results of an ultrasound that showed a tumor had grown 3 cm and needed to be surgically removed!!!!!! When I called my new clinic today, I was thanked for calling, given detailed information as to the fact that one test didn't come back until last night, and that my wonderful doctor was actually typing up all of the results, along with a treatment plan, which would then be mailed to me. I was also told that they like when patients call, that they are happy to speak to me about anything after I receive the letter, and was thanked again. I swear, I sounded like an idiot because I was thanking her over and over and stating that this was a new experience for me! Oh yeah, and did I mention that they offered the flu shot to me instead of telling me I have to schedule an appointment for one. I think I'm in love. :) The moral of the story? Demand better of your health care providers if you aren't happy!

<3 bis_size="{"x":16,"y":602,"w":649,"h":143,"abs_x":181,"abs_y":765}" br="">On a final note, I'm going to join the local Y because they have a lovely warm-water pool and lazy river that I can walk in without putting stress on my body. I'm going to look awesome in a Speedo and swimcap compared to the folks who are probably 40 years older than me in the mornings! Sadly, I can't swim so I'll be walking in water and doing aerobics for now. As wonderful as yoga has been for me, it's not providing the cardio that I really need to be getting.

Results to be posted later on. Please pray for me!
-S

Raw, raw feelings

Hi,

Rather than retyping my raw emotions, I'm just going to copy and paste my Facebook status to this blog along with a link.

Just watched the Channel 27 investigational story on chronic pain. A year ago, I was literally trapped in bed without painkillers or any hope of returning to a normal life because of a doctor in the Mercy Health System telling me that my chronic pain is IMAGINARY, along with other doctors there telling me that there was nothing more they could do for me. Advanced Pain Management, the clinic interviewed in the story, together with doctors in the the UW-Health System, rescued me from my personal hell by doing their job, eventually leading to three diagnoses (4th one pending) to explain the pain and are treating me with a whole health plan so that I can someday lead something that resembles a normal life again. I feel so horrible knowing that so many others had to suffer through the same painful, devastating and humiliating experiences that I did before finding the standard care that we all deserve.

http://www.wkow.com/global/video/flash/popupplayer.asp?ClipID1=5241028&h1=Battling%2520Chronic%2520Pain&vt1=v&at1=News&d1=340333&LaunchPageAdTag=Homepage&activePane=info&rnd=55503652


If the video link doesn't work, here's a link to the main newspage. Search for "Debate over how to fight chronic pain" for the story and a video.

http://www.wkow.com/

If I shared all of the gory details about what this health system put me through, you'd be filled with rage, I promise. However, I'm saving those details for myself for the moment.

For now...I bid you all a good night.
-S

What a difference a year makes

It's amazing what can change in a year's time. Think back to where you were a year ago...I'm sure that something happened that you would have never imagined, good, bad or otherwise.

A year ago today, I was in my second week of what became a 2 month medical leave. If I remember correctly, this was the date that I saw my now former primary care physician, who rushed me in to my OB/GYN's office, who then rushed me onto his surgical calendar to see what the heck was wrong with me. Within a week, I would be writhing in even more pain. The surgical wounds were healing just fine (side note: my OB/GYN was wisked away on a family emergency and I had a stand-in surgeon), but the surgery left me with a whole new level of pain that I hadn't experienced before. When I finally saw my OB/GYN again another week or so later, everything seemed so hopeless...he pretty much said so. This would be the last time I would ever see him. It was a dark time in my personal history, that's for sure. Fortunately, we found one good doctor after this day that turned the world around.

Thinking back, I honestly do not remember much of this time--who knows if it was because of all of the meds, or if it was because my mind is protecting me from the memory of the pain. However, I've made major changes to my lifestyle and minor, though important improvements to my health. A year ago I couldn't get out of bed. Yesterday, I ran around my garden picking pumpkins and gourds with my sister and nephews. A year ago I couldn't even think about attempting a workout. Today, I completed a short, though advanced yoga routine that requires strength I just didn't have back then. Last year, I languished in a career that I actually liked, but couldn't handle with my health issues. Today, I'm a languishing housewife because I've never been good in that role! LOL...had to get humor in there somewhere. While I'm not where I want to be, I see the light and I can find hope and strength to continue the journey.


So today, I only focus only on the light, pain be damned.
-S

Where do I begin?

Gosh, it's been so long since I've posted anything. I don't even really know where to start. It's been a long couple of months. Maybe I'll start with today and then add some non-chronological bullet points.

I feel ok today--definitely not good or great. I have one big knot of pain in my abdomen and I can't really describe it. I can't make it go away either. Stretching, walking, moving, not moving, sitting, laying down and peppermint oil (read on) did not help. Neither did percoset or cyclobenzaprine.

As for days prior to today:

• I was in the ER last Thursday with the WORST migraine of my life, and that says a lot because I've lost count of the number of times migraines have brought me to the ER. I was literally screaming from the pain while I impatiently waited for the doctor for over two hours. At least I wasn't the guy that had maggots in his oozing leg--overhearing that made me even more nauseated.
• I've been getting massages lately, and they're fabulous. It started with a gift certificate, and then I bought a bulk package. This fabulous woman that I now see has similar health problems and is just fabulous. I'm trying her essential oils and natural pain relief cures and they are helping, with the exception of today. The result? I take far fewer painkillers than I was taking.
• I know what percoset withdrawal feels like. A year ago, I was taking over 300 in just 2 weeks time. Two months ago, I took 90 in a month. Three weeks ago, I had gone 4 days without taking even a portion of a pill, but I started to experience strong withdrawal symptoms. Sadly, I still need a 1/2 pill every so often so I'm stuck in this place where I have a lot of symptoms a lot of the time. I'm praying for the day that I don't need any and I feel great! It's just so unfair to have to go through that when I've never once abused the prescription.
• I had another nerve block. This was my best recovery yet because I literally did NOTHING for the few days following the procedure as opposed to breaking orders and going back to work the next day. It still hurts to recover, gut it goes much faster. Sadly, i think the block is wearing off yet again.
• I think I want to go back to work, but I'm not really ready. I have too many crappy days to sustain employment. That totally sucks. On the bright side, I'm still making good progress. Next week wil be six months since I've left my job, and a full year since the wheels came off and I had to go on medical leave for two months. I think I'll write more on this on another day.

OK, I'm in need of a nap. Til we meet again.

-S

Rule breaker

Rule #1 of how to live a semi-functional life with chronic pain: Always have a supply of prescribed painkillers on hand.

So there we were, sitting down at the Brewers game when I began to be very uncomfortable. Reaching into my bag, I realized that my painkillers were in my car. Note that this was during the first inning. Also of note is the fact that Miller Park has a "No re-entry" policy! So, as I debated what I would do for the next 3 hours sitting by myself in the parking lot while my hubby, brother-in-law and sister-in-law were watching the game, my hubby grabbed me by the hand and led me out of our seats so we could figure out how to get to the car. Fortunately, there is a re-entry policy when you need your meds. They only let one person go, and they thankfully let that person be my hubby. I don't think I looked like I was capable of making it there and back at the time. All in all, we only missed an uneventful inning.

How is it possible that I could forget this crucial piece of my well being? Well, because I have a long list of things that I need to go anywhere, especially for a baseball game. I'm now working on a specific baseball game checklist so that I can try to prevent this situation in the future.

Later gators,
-S

Great weekend!

I'm trying to figure out how to do things at a moderate pace and it just isn't working. This week's proof? The back pain I was complaining about is a sprain/strain. I'm told it will take about a month to heal. What a bummer. This news from the PT aside, I still "graduated" from PT on Friday. Thankfully, my flexibility work on my legs, through stretches and yoga, along with the strengthening work I've been doing on my abs, legs and back are paying off!!!! Sadly, my pants size is not reflecting with the change, so I've had to start counting calories in hopes that I can comfortably get back into some of my favorite clothes. Not that this is a bad thing. Many studies suggest that pain from endometriosis can be lessened by cutting out processed foods. So, I'm going more "au natural" with my diet...or at least closer to it.

All of that aside, I had a great weekend. Not only did I do some super-fun things, I rarely had to think about the fact that I have pain and medical issues to deal with. Can't complain about that!

Hope you all had wonderful weekends as well! Make it a great week!
-S

A little introspection and a lot of tears

Hi.



I saw an interview with Rob Thomas in which he explained that his song "Her Diamonds" refers to his viewpoint of his wife's battle with a rare autoimmune disorder. The song perfectly describes many days/nights in my household.

Warning: I still cry everytime I hear it

http://www.youtube.com/watch?v=mNCgfrjKcqs&feature=avmsc2

That's all for today,
-S

Adventure before the adventure

Hey there,

We expected to be on our way to Ontario, WI for our yearly camping and canoeing experience, but we're very behind schedule. Last night was a doozy. Nope, not my health...the weather.

The storms started in the evening and just didn't stop coming. It's 11am now and there are still raindrops. Anyway, I was a little panicked sometime after 10pm last night, so I was up and pacing around the house. Suddenly, I heard the LOUDEST thunderclap that I've heard in my entire life. Since I was in the windowless hallway, I couldn't see the corresponding lighting, but my hubby said it was close.

Anyway, it was a couple of hours before we realized that the water did not work. Once we did, there was a string of profanities and a potential list of issues running through our heads,. My hubby went downstairs and came to the conclusion (after a dangerous move that resulted in shocking himself) that our well pump was fried. This morning, the plumber confirmed it. The kicker? Since our well is about 200 feet deep, they need to come in with a big truck to do the repair. The even bigger kicker? They can't come out until the ground is dry, which means we have to wait until at LEAST Monday to have the repair done. No water until Monday!!!! Thank God for our wonderful neighbors who let us shower at their place this morning and told us to come over any time to use their bathroom! In the meantime, we're heading for our canoe trip and will hopefully come home to dry ground on Sunday.

As for how I feel today...well, I feel stressed, which is not helping my back spasms, but this is my favorite trip of the year so I'm going to tough it out...mostly because the campground has flushable toilets and we don't. :)

Party on!
-S

I think I know what I want to say now...

O.K. I think I know how I want to say what I want to say now. And, since this is my soapbox, I'm going to stand on it.

I'm extremely grateful for all of my blessings and I thank God every day for them, but there is something that I want to put out there.

The thing that bothers me is when people tell me how lucky I am to have a husband who takes care of me. Yes, I am very lucky that I met my husband at the age of 19 and that he will spend his evenings taking care of the cooking and the housework, along with whatever I need to be more comfortable. I have more to share on that, but I don't want to go off on a tangent. However, I the definition of "taking care of me" bothers me when it is used in a monetary sense.

When the economy started to turn, we sat down and realized that one or both of us could end up unemployed. So...we started saving and sacrificing to prepare for such a scenario. We rarely went out to eat, we took no vacations, kept the terrible-looking paid off car, gave up little purchases like Starbucks, and we considered every single, solitary purchase before we bought anything, and we put money away for over 2 years. Above and beyond that, we've never lived beyond our means. We live in an older home that we fixed up ourselves, we haven't used a credit card in a few years and we're always the last people I know to get the latest, fancy technology. So, when my health got to the point that I knew I would never be able to be ok without taking time off of work, we decided that this was the time to use those reserves. Over the next couple of months, we saved every single penny we could muster to further pad our reserves. This is not a case of luck. This is a case of two people who mutually decided to be fiscally responsible. Either of us would have probably done the same thing individually.


I'm really not an expert on the matter, but I want to share something from my experience with this. Being lucky in anything takes at least some amount of work. Most lottery winners have been investing in tickets for years and years before they won--you have to go through the effort of getting the numbers before yours can be called. So please, look behind the surface before assuming that someone is merely lucky. I know that I need to work more on doing the same.

Thanks :)
-S

The new adventures of old Sarah

I'm such a mess. Seriously, a total mess. WRECKED. The last two days brought on the worst back spasms I've ever experienced. I'm not even sure how they started. It could have been a yoga workout that I tried, or painting on a ladder, or moving laundry, or picking up my growing nephews, or just turning my head wrong, but I have hardly slept in the last 48 hours. I tried everything and nothing to fix this spasm, yet it continues to spread.

Today, I finally turned to the source of all knowledge for help: Facebook. I made my plea for someone, ANYONE to share knowledge of how to make the pain go away. My cousin came through instantly, followed soon after by a friend who has unfortunately probably dealt with even more pain than I have in my life. The answer? A raquetball or tennis ball. Since I'm an avid tennis player (when I can be), I grabbed two cans of balls and a gross old softball sock of my hubby's and made myself a back massager. 1/2 an hour later, I realized that there wasn't just one spasm in my back, but several. I couldn't tell where the root of all evil was, so I dropped a quick note to my hubby that said something along the lines of it being neccesary to spend a ton of money for a massage. Let me tell ya, it was worth it! $74.95 after tip for the most healing hour of my life. I can still tell that my back wants to freak out on me, but at least now I know where to put the tennis ball. In the meantime, I chugged down some water and ate some fruit, and now I'm debating whether lying on the wood floor or taking a walk is the right next move to keep this healing train on the tracks.

Otherwise, I feel the feeling creeping back from my last nerve block. That can't be a good sign. I'm hoping that at least holds off until my back is fixed! I've been doing this camp and canoe thing for a few years now, starting the year that my big mess was diagnosed. I still can't believe that I'm about to camp for two nights as the mess that I am. I'm sure there will be a story or two to share at the end of it.

So, I'll end here for now and will hopefully get to the thoughts that have been swirling in my brain and dying to get out for some time in my next post. Curious? I hope so. It's more fun for me that way.

-S

Nerve block update and the bike story

Aloha!

Thanks to the good Lord that today is better. It's 1:10 in the afternoon and I've only taken a total of 1 percoset (1/2 in the morning, 1/2 just a minute ago). I still have a considerable numbness, but I think I'm down to what I should have as the result of the block. It's still an unsettling feeling to sit down and not be able to feel part of my butt check. I'm afraid to say this for fear of jinxing it, but I feel like this might be a successful block. The downside is that these blocks are really only a temporary solution so no one knows how long this will last. As for the longer-term plan, I am still making progress. Instead of just walking for exercise, I'm getting some real cardio workouts along with a 1/2 hour of yoga daily.

Otherwise, I have a bike story to share...

My hubby acquired a free Trek mountain bike and brought it home for me. Excited to go biking, I bought a helmet and took off for a short 2 mile ride in the hilly area where I live (on an 85 degree day). Turns out, I don't remember how to properly shift gears and I ended up flying down hills and then struggling to get up others. By the time I got back to my subdivision, I was absolutely worn down. Sad to say, I had to walk the bike up the last hill to my house, and then I rolled down my steep driveway. By the time I walked into the house, I could barely walk. Then a few minutes later, I found myself shaking and throwing up in the kitchen sink! After that, I couldn't cool down and couldn't stop shaking. I obviously pushed myself to far, and the heat did not help. The next day, my legs were fine, but my regular pain was so bad that I spent most of the day laying down.

And...back to the present. Since I'm feeling well enough, I'm going to get out of the house and run some errands, and then will take a little walk to enjoy this beautiful day. Oh yes, and I must give a shout out to my sister Zan (who many know as Suzanne). She wanted to elope, but let it out of the bag that she is engaged and will be getting married this September!!!!!!

Much love to all of you who continue to support me!
-S

Today is a better day...so far

Well, last night sucked. It was another evening and night where nothing calmed down my pain. I had to wait it out until sleep finally overtook me sometime after 11pm. The worst part is that I couldn't specifically point to the pain. It felt like the pain overtook the entire left side of my torso (minus the part that is still totally numb). On the 1-10 scale, I was at a high 8.

I woke up feeling much better and the pain has been much easier to manage today. Experimenting on my own, I slathered Ben Gay across my stomach this morning and it seemed to help a bit. I'm really happy because I've only taken two percosets so far today (and feel ok) as compared to yesterday when I had taken five by this time (that really weren't helping at all).

Otherwise, the day has been really low key for me. I dragged myself through some yoga and a very short 1/2 mile walk around the neighborhood. After that, I went to the garden and brought in some squash and lettuce for dinner. And now....here I am, patiently waiting for tomorrow to see if I feel any better.

-S

Today really hurts

Well, I'm still totally numb in a small area, but enough of it wore off that I'm feelin' some pain today. I swear, I must block this pain out every single time because I never remember how bad it is until my husband reminds me. I hope there isn't more than a day of this left because it's pretty miserable.

The pain didn't stop me from going out of the house today though. I was determined to go kayak shopping this weekend and we got it done! We went to four different stores to find the boat that best accomodates my pain issues, including one store that was on a waterfront where I was able to take a real test-drive. In the end, we're ordering online to save some money and I am praying that we get our new kayaks by next weekend so that we can take them out.

For now--I'm resting and hoping to turn in early again tonight.
More later.
-S

This one's all about my butt.

Hi,

Yes, I'm O.K. after my nerve block. It's still going to be a few days before I know the results though because the doctor numbed me up pretty good and some of the short-term numbing med is still working 2 1/2 days later.

Anyway, this nerve block was much different than the last 6 because the doc went after a different part of my pudendal nerve. Normally, he does a block on both sides of my abdominal/pelvic region and the needles go in through my back. This time, we were targeting a very specific area of continued pain. Little did I know, the needle went through my lower-left butt cheek!!! In the pre-op convo, the doc and I agreed that he would knock me out cold (as opposed to previous times where I remembered the whole thing). He also informed me that in addition, he would be numbing up the area really good so that the numbing would last a day or two. I didn't think to ask why, but I speculate now that he thought it would help me avoid some of my normal post-op pain. It did, but let me tell ya, I still can't feel most of my left butt cheek, among some other things, and it's VERY unsettling. However, as soon as some feeling came back, I realized that I probably had a bit of a bruised bum. After asking my hubby to check it out (which he eagerly did), I was quickly informed that I have a HUGE bruise around the needle mark. Great. I had high hopes that the Stimate that I take before each block to counteract my VonWillebrand blood disorder would prevent bruising of this magnitude, but I was not so lucky this time.

In addition to this event on Friday, my sister Zan was back in town, this time with her new boyfriend. Since I always seem to miss her when she is in town, I was determined not to miss her again. So, I rested for the afternoon, and then my hubby and I made the short trek to my parents' place. It was a nice time for me, and I hope that her new bf wasn't too frightened by us.

Well, time for me to turn it in for the night...with an ice pack strapped to my behind. :)

-S

Is medicine really a science, or just an expensive form of art?

Hey ya'll.

Well, I'm heading in for nerve block #7 on Friday. I'm hoping for greater results this time because my last week has been really painful--painful to the point that two percosets taken with two strong muscle relaxers and a long, hot bath didn't even take the edge off of the pain. So bad that for the first time in a couple of months, I was curled up in a little ball sobbing and feeling like I would never be ok again. While the nerve blocks have helped with a lot of my pain, I'm still researching other methods of pain relief that do not require hospital gowns, sedation, radiation, and needles shoved through my back. The number of strangers (albiet medical professionals) that have seen me naked in the last few years is definitely in the 100's. Not cool.

Anyway, about the title of this post--I keep going through these blocks, but I've yet to walk away with significant, long-lasting relief. I also get to keep experimenting with different muscle relaxers, creams, pain patches, nerve medications, etc, and just haven't found that right combo yet. My Doc also mentioned the fact that he hasn't brought out "the big guns" yet. I kinda want to see them,even if there is a risk of permanent damage--enough messing around with things that don't work or sort of work.


And of course, Friday night is the ONE night that my sister Zan happens to be in town and the whole fam (minus the ones that don't live here) can get together for dinner. I miss so many things because of this pain. For example, my hubby's bro and his wife were over on Friday for dinner and a bonfire. I made it through dinner and a bit of TV watching, but missed the bonfire portion of the night due to pain. I couldn't even drag myself the 50 yards to my own firepit!!!


Otherwise, I've continued to work hard on putting myself back together. My PT sessions are pretty much over, and I'm continuing my home program of endless stretching and abdominal exercises. My abs are definitely stronger, but I've yet to see even a fraction of an inch drop from my waist!!! I'm hoping that will come soon. In addition, I've finally gotten back into yoga and am just starting to get some cardio in. Thanks to FitTV, I've discovered Bollywood Dance workouts and am having a blast burning calories while I shake it in my living room.

Next time: My story of how riding a bike is NOT like riding a bike and pictures of Jello. Yup---Jello.

Peace out.
-S

So many things...

Hello,

Is anyone still out there? I haven't posted in weeks I think. Anyway, today is the day that I am officially dusting off my resume. I haven't really updated it in almost two years and I was surprised to find out that I don't really recognize the person on paper. This stranger in my resume appears to want to take over the world (or at least the debt collection industry) because she thinks she has something to prove. In reading the resume now, I see that this woman has already accomplished more than she realizes. So, I'm updating it to reflect me--someone who accomplished a lot and just simply wants to work to live instead of living to work.

As for my health, it's been a positive road. My physical therapy program was re-calibrated last week and I feel like it is now at the right level for my (lack of) strength and the chronic pain. . I still have the yucky days, but they usually happen because I've pushed myself to far the day before. I know when I'm doing it too, which makes it all the more stupid. I'm encouraged by the independent statements from my pain doctor, the physical therapist and my OB/GYN who all believe that I'm just weeks away from a "normal" life.

Fingers and toes crossed for me, please.
-S

Overacheiver Extraordinare

I dont' even know if I spelled the title correctly, but in my quest to be less of a perfectionist, I'm gonna leave it alone.

Well, it's not surprising that I set impossibly lofty goals for myself in my new life as an unemployed-college-graduate-slash-housewife. I had grand plans to keep my entire house in immaculate condition, as well as accomplishing my goals of painting a few rooms and sorting through an entire basement storage room of forgotten possessions. How many of those things have been accomplished? None. Why? Because I don't know how to set non-pie-in-the-sky goals for myself. But I'm trying with the help of my dear husband who understands me more than I am usually willing to admit. So, he's helping me set attainable goals like weeding one row of the garden, emptying the dishwasher, doing a load of laundry, picking out a paint color, etc. I'm so used to tackling things head on and pushing through until it's done or I break. So this time, rather than breaking or thinking I'm failing, I'm patiently letting things wait until the next day. It's pretty awesome.

In other news, I just can't go a month without a procedure. This time it was another nerve block, under twilight sedation, with 9 trigger point injections. I'm very glad that the doctor remembered me asking for more sedation halfway through the last one. He knocked me OUT this time. Usually, I walk back to the recovery room and plop down in an uncomfortable recliner with assistance, but this time I woke up in a comfy (no joke) hospital bed. I didn't remember a thing until the next day. Turns out, sedation makes me a liar. My doctor asked me about a TENS unit and how that was going and apparently, I told him it was going well. The problem with that is that I've never had a TENS unit. Oops...can't wait to apologize for that one! The good news is that it really helped to break up some scar tissue, which is just thrilling. I hope that there won't be many more.

-S

Cat bath

I need another 20 or so hours in each day. It's 2:30 and I still want to take a walk, call the hematology folks with a long list of questions, and make a casserole before my hubby gets home from work. I haven't made dinner yet this week and the result is that we've been eating very random things in the evening. The walk might not happen today, because its cold. On the other hand, I skipped it yesterday for that reason in favor of eating, so I should probably force myself to get out there. I don't have the luxury of doing a lot of calorie-burning things yet so I should probably take what I can get.

Today, I tried to give one of my shedding kitties a bath. Now I'm covered in scratches, one of which is sure to leave a very long scar. I've also never heard a cat scream so much. Yup...scream. Unfortunately, I have that nerve block next week I'm wondering whether it is better to warn the doctor that I'm covered in scratches, or if I should just let him find them. I'll probably forget.

OK, forcing myself to take that walk now.

-S

Membership

Well, the day has finally come...I'm done with my bachelor program, and not a moment too soon. The graduation ceremony is Saturday and although I'm *cough, cough* years old, I'm still participating in the ceremony because I suffered through my share of hurdles on the way. Yay!

Otherwise, I became the member of two different clubs last month. The first is a lifetime membership to Delta Mu Delta, Kappa Alpha Chapter, which is a National Honors Society for Business Administration. Then I also received information about my automatic membership to the Great Lakes Hemophilia group. I really feel like I don't belong--I have such a minor case in comparison to people that almost can't move because even a small cut could kill them.

However, the upside for me is that I received two laminated cards and three sheets of paper in the mail from the Hematology Nurse yesterday. Two of the sheets of paper confirmed that the medication that I tested did indeed show a significant increase in my Von Willebrand Factor, meaning that a simple medication will help me stop bleeding when I have minor cuts or nosebleeds. Hooray! The third sheet was a detailed description of the how to handle me if I ever have to go to the ER/Urgent Care again for bleeding. The laminated cards state the name of the disease, 24 hour contact information for the Bleeding Disorders staff, and other standard info. Then I noticed 6 beautiful little words: "DO NOT KEEP THIS PATIENT WAITING". Seriously? This is the greatest day of my life. I have spent HOURS waiting to see a Doctor when I went in for a nosebleed, and even once recently when I was sent to Urgent Care to be checked for internal bleeding after a surgery. Maybe the ER/Urgent Care docs around here (the ones that never even thought to check for this problem) will take me a little more seriously next time.

Otherwise, I have another nerve block with trigger point injections (probably 6-7 injections) coming up next week and then an unfortunate colonoscopy/endoscopy to deal with (regular check-up of other issues) sometime in the near future. I really wish I hadn't watched "Ghost Town" or whatever that movie with Ricky Gervais is called last weekend...

-S

P.S. When spell checking, the suggestion for "colonoscopy" is "kaleidoscope". Strange.

So much to share...

Hi folks!

So much happening these last couple of weeks. Here we go!

My PT has been going really well. I can tell that I am making gradual improvement, though the therapy itself leaves me in a lot of pain some days. Switching to a different kind of PT has been the best thing that's happened to me to date. We've really nailed down all of my "trigger points". Unfortunately, there are many. Most are muscular and travel and are as far away as my ribs and back, but the most important find is that the scars from my laparoscopy surgeries are causing the worst of the worst of my pain. The absolute worst is the scar that was cut into two subsequent times, followed closely by the 1 1/2" scar that was left after my ovary was removed in 2007. The therapy is really painful--the PT basically pushes into the adhesion formed by the scar tissue in an effort to break it up. I keep threatening to get up and run out the door, but I know its for my own good. In addition to this, I literally have 3-4 hours of exercises each day, including a 45 minute-long walk. They are mostly centered around creating good posture and strengthening core muscles so that my body stops reverting to overusing the wrong muscles for basic movements. It is grueling and wears me down everyday, especially sitting and standing with correct posture ALL of the time, but I know it is for the best and will make a huge difference in the long term.

Next is the fact that learning all of this information made my treatment through the pain clinic that much better. I had an appointment at 7:45 this morning in Madison (which is just cruel, but that is all they had available that made it easier for the hubby to be there). Now that I can point to very specific sources of the pain, I can receive another nerve block that includes trigger-point injections in the worst areas. I was about to schedule one for the 13th, but quickly remembered that my graduation ceremony is two days later and I really don't want to sit through that in pain from all of the needle marks (my Von Willebrand causes bruising and sometimes bleeding that other people don't get from such a procedure).

Speaking of graduation, I'm still trying to figure out what I'm going to wear--and more specifically, which shoes! In my budget-conscious effort, I'm planning to wear things that I already own (or things my sister already owns..lol). Also, I had a debate with myself about how uncool I'm going to look carrying the Tush Cush that I just ordered, which will save me from being completely and udderly uncomfortable during the ceremony. One would think that I'd be past these hang-ups by now, but nope, I'm still totally insecure about appearances when I know 1000+ people will see me walking into my ceremony carrying my butt cushion. Which reminds me that I still have to make the 1 1/2 hour drive to pick up my cap and gown from the main campus. I think I'll wait until the Tush Cush arrives to make that drive!

That's it for me for the moment. I have to get back to my very last paper of my degree that I've been stalling on for weeks. :)

-S

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

A day in the life of me

I thought of doing a post like this when I was at the library with my Mother-in-law and Sister-in-law last week and I saw the book One Day in the Life of Ivan Denisovich. It's good book by the way--I recommend it if you've never read it. Those of you that went to school with me in Waunakee may remember it.

Anyway, the fact is that I haven't yet fully disclosed what it is actually like for me to deal with this pain on a daily basis. I've learned to hide so much of it and it probably doesn't help anyone to really understand what it is like. After a lot of contemplation, I've decided to share what happens during my typical day so that people can begin to understand what it is really like to live with Chronic pain. So here we go...

The Typical Morning

Most mornings, I am woken up by pain around 5:30am and am shaking and crying within a minute because the pain is so bad that I can't stand it. My husband gets out of bed to get me something to eat so that I don't get a sick from taking painkillers on an empty stomach (learned that one the hard way). At a minimum, it takes 20-25 minutes for a painkiller to kick in, but realistically, it is more like 45 minutes (by 6:15am). From there, I am so exhausted from the pain that I go back to sleep for another 1/2 hour, bringing me to 6:45. Next, I spend about 15-25 minutes motivating myself to get out of bed. When I finally do, I take my morning meds, which has ranged from 2-6 pills. I take a short bath every single morning because it helps with the pain and because I usually don't have the energy to stand through a shower. After that, I get ready as fast as I can, which includes sticking on a Lidocaine pain patch, and packing snacks and a lunch for the day. I generally check my work e-mail and schedule for the day on my business BlackBerry to make sure that I'm not already missing a meeting, since my co-workers are all on Eastern time. I also have several employees and it is very important to me to make sure that I am not leaving them hanging on something urgent. Then, I finally get out the door far later than I intended. Considering that I used to get to work by 7am, it's stressful for me to see that it is generally 7:45 or later by the time I actually leave my house.

The Typical Workday

As you all know by now, my last day of work is April 2, so this part of my day will change very soon. After reading this, you will all probably understand why leaving my job and not working until my pain is under control is so necessary for me. However this is the schedule for now: I get to work far later than intended, quickly read all of my e-mail, prioritize my day, and make sure that I eat a piece of fruit and have a cup of coffee to keep up my energy. Inevitably, something that has to be done by the end of the day (if not sooner) comes up and my day is thrown to chaos, which I'm used to. Unfortunately, in my current situation, I throw myself into it and before I know it--my painkillers have worn off and I'm in terrible pain. Luckily, I have a windowless office and everyone that I work with is in another state so they don't actually witness this. I generally take a painkiller and curl up in my big leather chair for about 20 minutes, or sometimes even curl up on the floor for a bit. At this point, there is no way that I will be able to accomplish anything of value within the next hour and I realize that any projects with upcoming due dates will either have to be late, of lesser quality...or worse in my book...will have to be piled onto a co-worker's plate. In addition, I have at least 2 physical therapy or doctor appointments each week, so the time crunch becomes even crunchier (for lack of a more descriptive word) So, I struggle to get through the rest of the day and go home much sooner than I would want to.

Evening

At this point I am totally exhausted and generally have homework to do. School has not been truly stressful for me for a long time (with the exception of a class that I recently had with one nutty professor), but it does take me more time than it used to because I have to make an extra point to proofread anything that I write. In addition, I read a little slower than I'm accustomed to so that I can make sure that I am comprehending what I am reading. I also have far less time to complete things because I don't feel well 3-4 nights of each week. Luckily for me, my husband loves to cook, so he handles dinner and dishes while I rest and slowly work on homework.

Night

Nights are almost as bad as mornings. I only get to take a set amount of painkillers each day and then I'm totally reliant on a muscle relaxer that was prescribed to knock me out so that I can sleep. This also takes time to kick in, so if I wait too long to take it, I have to deal with a lot of pain until the pill kicks in and does its job for me. I don't really get a choice of how late I want to stay up anymore. The stuff knocks me out for a full 6-7 hours once it works, so if I don't take it by 10 along with the other 4 pills that I take at night, my morning becomes even more difficult than usual.

So, that's my life. Not much room for laughter and fun, but I still make a point to cram it in. Granted, that part is pretty easy to do with my hilarious husband ,funny co-workers, and daily conversations about the antics of two of my nephews with my sister.

I also have a few quick updates from the last week or so:

• Hematology appointment Monday--this will be the "moment of truth" that I've been dreading.
• Nerve block on the nerve that is actually causing my pain on Thursday--more invasive than the other ones I was having, so I will be unconscious. If all goes well, the day in the life of me could drastically change for the better in just a few days!
• Only 8 more workdays until I am unemployed--I'm trying to figure out what to call myself then: Unemployed? Housewife? Professional Patient? Professional exerciser? Can I pull off the title of "Trophy wife"???

Thanks for reading my most confessional of all posts to date.

-S

It's been awhile...

Hi all,



I haven't posted in awhile and it was by design. There were a lot of ups and downs over the last couple of weeks and I wanted to have it all in perspective before I shared anything.



First is the update of my blood testing. Two days after the blood draw, the hematology department's social worker called me with this statement: "Your results are consistent with a blood disorder". Then they set me up with the first hour-long appointment that the doctor had available. In totality, I have a two hour appointment set up. The first hour is to talk to the nurse about the diagnosis and treatment plan and the second is to spend time with the doctor and ask questions. I'm a little concerned about this.

I didn't say much about this in my last post, but hemophilia is a concern because my great-grandmother had three boys who died in childhood of hemophilia. I also have a great aunt who had a son with hemophilia. He was only a few years older than me and had a very rough life because of it. Per the link I posted in my last post, if I am a carrier and my hubby and I have children, we have a 25% chance of having a son with hemophilia. Aside from that, I'm concerned that there is another bleeding disorder because of symptoms that I have. My maid of honor at my wedding has seen more than her share. She saw me bleed excessively from a small head wound when we were in a car accident together, and also saved my wedding dress with quick thinking when I got one of my infamous nose bleeds at my wedding reception. So, we'll see what happens when I go in on March 22.

Next, I had a nerve block on March 5. My plan after the last one was to refuse to have another one because the effects were not long lasting. Having two needles shoved through my back is not fun, and any procedure comes with risk. But, I was talked into it by the pain clinic doctor after hearing that a patient in a similar boat as mine had to have five before she received a year's worth of pain relief. So, I dove in for number four this past Friday. I quickly learned that the nerves that were blocked were not the ones that caused all of my pain. Long story short, I got back into see my pain doc the following Tuesday, and he gave me some different muscle relaxers, upped the dose of a med that I take that is supposed to help with nerve pain, and told me to call in week if I still have the pain. The plan is to do a small injection to help that nerve if needed.

After that, I had a few good days, though I still have to take pain killers and muscle relaxers. I'll take it for now. The great news is that I only had a couple of appointments last week and was able to really focus on work and homework, and I was also able to do a bunch of errands and things I was waiting to do. The downside is that I still wake up in a lot of pain and have moments of pain between doses of the painkillers, but I'll take it for now.

Here's to a great week!
-S

I'm coming out...I want the world to know...

...that, as of April 2, I am unemployed. By choice. Yes, in this economy. No, it wasn't on a whim.



Back on one particularly stressful day, I came home in complete misery from a day of work, school, appointments and pain and realized that somethin's gotta give. At the time, I was only three classes away from graduation (stress-free electives), going to up to 5 appointments a week, and of course, I am in the boat of not being able to control the pain. In the end, it made the most sense to give up my job. It's only money.



This was not a lighthearted decision--I am after all a workaholic and have been with the same company for 12 years. So, about a month ago, I told my boss the words that I don't think either of us were ever expecting to hear..."You will be receiving my resignation shortly." It was a difficult conversation because I have a great deal of respect for him, along with everyone that I work with. Since then, I've been watching/hearing jaws drop all over the place as I slowly tell people that I'm leaving.



So, as we go along, I realize that I am losing out on luxuries that I can easily give up, like expensive handbags and jeans, but that I'm probably also going to lose out on the smaller things like my fancy handmade soaps, organic make-up and my favorite brand of toilet paper. Don't judge, I know you have one too. But, it's all worth it.



The decision made me feel really selfish for about a month. But, then I realized that this might be the most un-selfish thing I am doing for many reasons. However, the main reason is simply that my husband has been taking care of me for so long--running to the pharmacy for prescriptions, spending many nights in, getting out of bed at 2 in the morning to find my painkillers, taking care of medical bill disputes, cleaning, laundry and on and on and on. I see the stress it causes him, even though he's awesome enough to hide it from me. By getting better, I can give him back both his wife and the life we once knew together...which also involved much less income. :)

I can't wait!
-S

Complete Randomness!!!

Before I turn negative, I want to share this:

God didn't promise days without pain laughter without sorrow, sun without rain. But he did promise strength for the day, comfort for the tears and a light for the way.

I saw this saying on a sign in some catalog somewhere and it struck me. Since it was during a time that I was feeling well, I saved the text so I could pull it out at a time like this. Now I'm planning to find and buy the sign to hang in my bedroom so that it is the first thing that I see in the morning.

On another note--Since I recently spent two months doped up and stuck mostly in my bedroom on a medical leave, I redecorated my entire bedroom and living room in my mind. After I returned to work and had my full income again, I started shopping around for all of the components of our bedroom, beginning with a pair of black-and-white curtains with a fancy pattern that I thought my husband would never agree to, but he did...let's face it, I've spent way more time in this room than he has as of late, so I feel like I have the right to claim eminent domain on the decor. :)

OK, onto the negative. Since my Dr. is now on the blood train, I sent my mom an email asking for information about all of the hemophilia and other blood-related diseases in my family. Sadly, many men, or should I say boys, have died of hemophilia since the 1920s, and many women suffered from other bleeding issues as well. If you've ever witnessed one of my EPIC nosebleeds, you can understand why I am now becoming frightened for my own future at this point. My first concern has to be myself, but my second is now to have a genetic work-up to find out if I am a carrier of any of these diseases. By all accounts that I have been able to gather, I will be the first to go through testing like this, so the women in my immediate family (a total of 5), are going to be very interested to see what happens.

Next, is that for the first time since I've returned to work in November, I had to admit to my boss that I just don't think I can keep up with my main projects. More on that at another time, but let me just say the words were not easy to say.

Finally, I just can't seem to figure out a way to comfortably get through the day. One would think a pain clinic would be aiming to make me comfortable in both the long and short term, but this one only seems to be concerned about the long term. Friday seems miles away...

...and speaking of...I am a week into my pill case experiment. This morning, I woke up groggy and in pain, had the case upside-down and took my PM pills. Luckily for me, I removed the pill that knocks me out cold at night (See my post titled "Ash Wednesday High" for more on that pill) so it wasn't a huge deal, but I have some doses that are higher at night than in the morning.

For my finale...out with a bang. Tomorrow, I submit my application for graduation for my bachelor degree in Business Administration! It's been a long, long, loooooooooong road to get there, but I'll be proudly walking across the stage to snatch my diploma on May 16th. You'd better bet that there is going to be a party at my place, and you're all invited.
-S

Maybe there's something in your blood?

Today was horrible and great all rolled up into one. I woke up in crippling pain and I really don't feel any better right now. However, this morning my husband drove me to an appointment with my new ob/gyn and we have some new, potentially promising avenues to pursue. Otherwise, trying to work was torturous...I was in so much pain that talking on the phone wasn't really possible through much of today.

This Dr. happens to be absolutely amazing in the fact that to the best of our assessment, we figure that finding the root cause of a medical issue is his absolute passion...which happens to be a big part of what I do for a living (though no one dies if I fail...). On this visit, he ruled out endometriosis as the ongoing cause of my pain, based on my current endo treatment plan. He then suggested that I see a hematologist, due to the history of some blood-related issues in my family, and my own propensity to bruise easily, along with the knowledge of some HORRIFIC nosebleeds that I've had in the past. He also wants me to see a gastroenterologist to rule out possible lower-digestive track issues, though it's a very unlikely cause. Lucky me, I already have one for upper-digestive track issues, so I'm all set.

Getting closer! Next stop--pain clinic on Friday.
-S

So what the heck is wrong with you, anyway?

I've heard those words many times. In short, here's the list:

Migraines
Endometriosis
Kidney Stones
Barrett's Esophagus
Chronic pelvic pain syndrome (cause undiagnosed, but suspected to be endometriosis related)


The links are to sites that give a fairly straightforward explanation of if you wish for more information. They are also sites that do not automatically throw graphic pictures in your face on the explanation page as some other sites do.

These are the surgeries/procedures that I've had since August of 2006 to either diagnose or treat these conditions:

2 Laparoscopy procedures for endometriosis
1 Oomphectomy (removal of left ovary and tube)
3 Lithotripsy procedures for that stubborn kidney stone
1 cystoscopy that actually undiagnosed a previous diagnosis
1 sphenopalatine nerve block that ended lingering pain from chronic migraines
3 hyperplaxis nerve blocks to attempt (unsuccessfully) to give me relief from the chronic pain.

1 endoscopy that diagnosed my Barrett's

I actually had no idea what the total count was until I typed this....wow...12 procedures in just 3 1/2 years. Anyway,the endometriosis and chronic pain are what have been keeping me from my life since last August.

So, that's what's wrong with me in a nutshell. Here's hoping we put the missing pieces together quickly and painlessly, and that I am not one of the many that never finds the cause of her pain.

-S

Ash Wednesday High

Yup, that's right. My idea to get a morning/noon/evening/night pill case failed on day one...and actually, now that I say that, day two..brb..have to take my noon pills. Alrighty then, back to yesterday.

I came home from work, took my "evening" pills around 6pm, and went to Ash Wednesday church service. As we got there and took our seat near the front, I became groggy and remembered that my 6pm dose of pills included a muscle relaxer, which knocks me out for about an hour or two. Oh my. I quickly and quietly told my husband what was going on, then looked up at the altar and noticed that there was communion during the service. OH NO! So, as the service progressed, I could barely stand without bracing myself against the front of the next pew, with my legs at an angle resting on the back of the pew. When it was time for the sermon, I kept nodding off, in clear view of the pastor. My husband kept politely nudging me as my head bobbed, only for me to wake up and have my eyes roll right back into my head. During the offering, I had no choice but to fold my hands, put my head down, and take a minute-long snooze in a prayer position. I somehow made it to the altar for communion and then made the even longer walk to the car. By the time I got home, my husband had to drag me upstairs and to the best of my memory, it was a short night. I can't wait to explain that one to the pastor!

As for today, the pain level is pretty bad, but it's not stopping me from a quick evening with dear friends from yesteryear. Laughter is after all, the best medicine and there is no better place to find laughter than around a table with old friends.

More on what's actually wrong with me next time...people keep asking and I never have the time to fully explain.

Later,
-S

Adventures at the pharmacy

Perhaps my greatest business-to-customer relationship at this moment is with my pharmacy. They know me by caller ID when I call and almost always know what I'm calling to refill. One fantastic Pharmacist even went out of his way to get me a different brand of generic pills when I told him that the one I was getting wasn't working as well as the brand name. He knows what prescriptions I am on and always checks out how they interact before I get there. They've seen me several times, propped up on a chair while my hubby fills the prescription and I look just barely alive, always wishing me luck in feeling better. That Pharmacy is my Cheers. Sad, I know. I'd give anything for that yearly medical deductible to go to Macy's instead.

Anyway, I called the pharmacy today to refill a prescription. I'm having a really hard time remembering my afternoon doses because I get all wrapped up in work that I don't think about anything else until the end of the day. And honestly, sometimes I just get confused with all of these pills and can't remember if I took them or not, so I don't take them to make sure I don't double dose. I bought a cheap watch with an alarm to remind me, but the watch hurts my wrist and is kind of ugly, so I don't bother with it anymore. So, I decided to ask the pharmacy if they had one of those morning/noon/evening/night pill sorters, and they had one left, so they held it for me until I could get there to pick it up. When I did get there, the tech told me that she is glad she pulled it for me because someone else had come in about an hour earlier looking for the same thing. The only thought in my mind, which I didn't verbalize, was, "How much older than me was she?" My guess was at least 40 years older. Ugh. I feel like the Seinfield episode with the Marble Rye right now. Oh well, at least I'm smart enough to call ahead to beat out my 70 year-old competition cause Lord knows, those spunky elders can probably beat the crap out of me!

The beginning

Hi, I'm Sarah. I used to blog about my craftiness, but truthfully, it was boring. My life is now consumed with chronic pain. Let me just say up front that in my opinion, chronic pain is just a "filler" diagnosis that medical professionals use when they have either given up, or are buying time to figure out the real problem. My life is now filled with appointment after appointment with various specialists to control my pain, but no one is looking for the cause at the moment. But, more on me later. Here's why I decided to blog about my struggles with chronic pain:

I was at an appointment, chatting with a medical professional about the fact that I was so grateful to finally find good medical care after years of struggling with pain. She said that sometimes, one just needs to find a doctor who will listen and ultimately help them put the pieces together. She then told me about a young patient that she saw a few years back who was having horrible, constant migraines. She was known as a difficult patient and said that no one could help her. She was in and out of a mental hospital. Doctors diagnosed her pain as psychological. She kept trying to kill herself, which would put her right back in the mental hospital, where she would still struggle with her pain. Eventually, she succeeded in a terrifying manner by getting in her car, pouring gasoline on herself, and lighting the match.

I drove home in tears, because I know that feeling of constant pain, feeling hopeless, feeling like I am doomed to live my life in pain that I am just not equipped to handle. I later told the story to my husband, crying even more than I did on the way home as the words left my tongue. His response was that this girl probably did have serious mental problems and that this is not the norm. I should feel bad about her situation, but I can't compare myself to her. Of course, he's right, but it made me think. The fact is, I do have a fantastic group of supporters, beginning with my husband, my family, especially my sister and her husband, my in-laws, and various friends, and even some people that I didn't even know that well. And...above all, I have my faith. God does not give us what we cannot handle, God helps us handle what we are given. In retrospect, I have never gone to that dark place. My faith and my support system have kept me from going there in even the toughest of times.

I'm not sharing my story to brag about the fact that I have supporters--I'm sharing my story to help people understand what I am going through and to hopefully help someone else in their own battle. My advice is this: if you know anyone in any kind of pain, or anyone dealing with any kind of illness, know that they need you, that they rely on you, that they depend on you just to get through the day. They remember just a few kind words from you--forever. For those of you suffering through your own battle, don't be too proud to share your story with those who are genuinely interested in helping. Some will have had their own similar battles and have great advice that you would have never known otherwise. Just keep focusing on the positive.

With that my dear friends, I am heading to bed, knowing that I am truly blessed, and praying that God watches over all of the fabulous people that help me through this tough time, and praying that there is an answer to this pain. Thank you to all of you just for being you.

-S