Happy Anniversary to me!

Hello, 

I've just returned this afternoon from my 9th Wedding Anniversary mini vacay with my hubby.  Despite the fact that we both have colds...his turned into an infection requiring anti-b's...and my pain is still flaring, we had an amazing, relaxing time in a cabin at a bed and breakfast.  Since we didn't feel well, we didn't do the normal activities like shop in the tourist town, go to a bar, or take a boat ride, but we did manage to make it to dinner one night.  We also took a 50 mile drive through farmland to take in the fall colors and I saw the first Bald Eagle that I've ever seen in the wild.  

What really got me during the trip was that even though I was sick and in pain, I felt so much better than I did two years ago when we stayed in the same place for our Anniversary.  It was during the time I was on a 2 month medical leave, about a week after I had a laparoscopy for my endometriosis (which didn't help) and at a time where I was taking 10-12 percoset each DAY.  I barely got out of the bed during the 20 hours that we were there and not surprisingly, I don't remember much of the trip at all.  I say this all the time, especially here--but I always think that I haven't made the progress that I should have, until something makes me think back. Then I realize how much hope I've been given since those hopeless months. 

As for the next week, I begin Monday with my cholesterol test, followed by an appointment with my primary care physician to figure out what do to with my Fibro this winter, my pain medications for the pelvic/IC pain, and the GI stuff that's still causing me problems.  I'm trying to centralize my treatment into as few doctors as possible, so I hope that goes well.  On the downside, I heard a rumor that my awesome new primary care doc is leaving the practice, so that is going to put a gigantic wrench in my healthcare.  Also, I have PT on Wednesday and a bladder instillation on Thursday, which is really going to hurt since I haven't had one in two months. I'm sure I'll have more updates on that this week. 

For now, I sleep.

-S

A Friday 2fer

Me again,

Something I forgot to share that I remembered as I was hooking up my INF (similar to a Tens) unit.  I'm becoming immune to it.  Didn't know that was possible.  After PT, I generally stay to be hooked up to the clinic unit before I leave.  Normally, I hang out on the unit at the level of 10 to start, and about 18 when I leave.  That's higher than most with my issues, meaning a stronger pulse.  This time, my PT was turning up the level and I couldn't even feel it around 7.  She was afraid of hurting me, so I took over the knob and turned it past 20.  By the time I was done, I was in the 30s. My home unit is now doing very little for me since the top charge doesn't do what it used to. The good news about this is that it confirms my pain is real...not that I need confirmation myself, but I've learned  it helps to have such notes in a medical file. The also sort-of good news is that it means that I'm acclimated to the pain.  Meaning:  I may not really be having less pain, but I'm getting used to what I have.  Either way, I'm ok with it because overall, I feel better. The question is still...what next, which is where this ties into my previous post.

Not sure how well I've just explained all of that, but that's what it is.
-S

Still not feeling great

Happy Friday,

I'm really kinda falling apart this week.  No matter what I eat or don't eat, I can't get my digestive system on track, so I feel like I'm walking around with the flu. Sleep continues to elude me and my pelvic pain (which is actually more abdominal pain) at the moment is still flaring. My PT was able to confirm that the source of the pain is flared scar tissue/endometriosis adhesions.  And being autumn in Wisconsin, my Fibro is flaring.  My new symptom is random numbness in my arms.  Unfortunately, there isn't a quick fix for any of this...but I guess if there was, I wouldn't be here blogging, huh?

So, the solution:  I have an appointment with my primary care doctor on the 17th, along with a fasting cholesterol test and then we'll figure out how to attack all of this stuff.  Not so coincidentally, I also have my bladder instillation at the hospital up the road later that day. It's nice to get things done all at once.  Overall, I'm pretty down about it all this week.  Such a mess.  On the bright side, I was able to get four yoga workouts in in the last few days.  I skipped a full workout today because we're heading back to Miller Park today and I know that I need to bank my energy for such events.

And a publicly shared note-to-self here...I have a few things that I've been meaning to talk about lately that I haven't gotten to.  Here's a list for the hopefully near future:

• Weight
• The funny side of pain
• Forums

I'm already forgetting at least one thing that I know has been on my mind so I hope it surfaces. 

-S

Greetings,

As I mentioned in my last post, I was off to the Milwaukee Brewers playoff games over the weekend. Since we live over an hour away from the stadium, we decided to stay with our awesome friends and fellow ticket buddies Saturday night. That plan allowed us to attend church with their family, which includes our godson.  The weekend was amazing sports-wise (I'm sure all of you non-Wisconsinites are already sick of us bragging about our Badger/Packer/Brewers victories over the weekend), but I'm paying for it dearly.  I spent today on the couch and my legs, back and arms are still killing me.  Aside from that, my pelvic pain has calmed a bit, but not enough. Normally, I'd be doing one of my favorite yoga workouts on Monday morning and then heading to coffee with the ladies, but today was a day when a workout would have hurt me more than helped me. However, the fact that I made it to both games and didn't have to leave early or give a ticket away was beyond anything I would have expected of myself at this point.  The use of my tush cush, layers of clothing to keep the cold away (which I didn't need) extra medication (which I only needed twice in two days!) snacks, comfortable but not super-cute shores, and my ever-supportive hubby got me through. In 2008, the Brewers  had the wildcard spot and I had to give away my second day ticket because I was so destroyed from the first day.

I can't remember if I've recently mentioned how effectively I've been putting off seeing a GI doctor and therefore; a colonoscopy, but my fear is that I have to put those days to a quick end.  My greatest fear is Celiac Disease due to the fact that I already have a GIGANTIC list of things that I can't eat.  I was really careful about what I ate this weekend and my friends were super kind in making sure that there was food for me to eat, but I indulged in about 2/3 of a beer on Saturday and maybe 1 1/2 MGD's on Sunday and boy am I paying for it today!  My stomach is just destroyed.  Sunday morning was kind of bad, and this morning had me doubled over in pain until about 3pm along with all kinds of other problems.  I guess it's a good thing that I don't love beer (exception: Guinness) so I won't miss it too much.  Looks like I may be doomed to a life of rice, potatoes and water by the end of this.  Maybe I'll finally make that appointment tomorrow.

Maybe.
-S

A new identity crisis

Well, it's been a heck of a week!

To get the bad out of the way first-I decided to try chili with organic, homegrown tomatoes on Sunday. My hubby made it without jalapenos and all the other good stuff that makes chili, well, chili so that we could see if I could handle tomatoes.  I can't.  Yesterday was rough.  I had to take a full percoset for the first time in probably weeks and that alone made my stomach hurt. My Interstitial Cystitis flared and I woke up three times overnight because my bladder hurt and I had to pee.  Throughout the day, I drank tons of water and was running back and forth to the powder room literally every 15 minuted because my bladder was killing me.  (Who would have thought that 2 1/2 bathrooms was barely enough for a two person household?)

Rewinding a bit now...my last week went really, really well.  I was able to keep all of the plans that I made and get a ton of things done.  I've been weeding the yard, doing significant amounts of cleaning/organizing, and feeling well enough that I'm finding myself with some free time. The sort-of downside to this is that I'm beginning to lose my identity from the last year and a half.  My identity was that I was a sick person looking for answers and is taking some time off. Now, my identity is someone who has answers, feels pretty well and doesn't really know what to do next.  So, I've changed my definition of myself to "Trophy wife".  :)  It seems to be a good placeholder until I get to the next phase of my life, whatever that may be.

That said, I was out with college friends Thursday, Andy took me shopping and to dinner Friday, followed by time with Nephews on the way home, a dinner and class reunion Saturday, and then a day of rest Sunday.  It was on Saturday night that I found myself explaining my last two years to many, many people that I haven't seen in awhile.  At one point, we were discussing something about the household that I haven't been able to take care of for a few years and my hubby just looked at me and said, "Your life really is magical, isn't it?"  After we all stopped laughing, I had to admit there was a lot of truth to that. While the pain, medical bills, questions, surgeries, etc were miserable, I've been blissfully ignorant to a lot of things, like  what my husband does with all the paper waste in the house and how often the litter box gets scooped.  Not to mention--I was drugged up for A LOT of the last couple of years.  When I think back, lots of things are hazy..I can't even remember entire movies that we watched!

So, I'll sign off here before I ramble anymore. There's yard work to do and jobs to apply for!
-S

I ate cherries

***This post failed to publish yesterday due to some kind of system error.  Please enjoy a day late***

Hi,

Well, I've unintentionaly hurt my bladder a bit today.  When shopping at my local co-op, I picked up a few new things to try that I thought were within my diet guidelines. One of them was a PB&J fruit bar that was dairy free, gluten free, preservative free and as an added bonus, it was vegan (which I'm not, but I'm trying to add a lot more vegan meals into my diet).  After I ate it this morning, I looked at the label again and realized that cherries are a main ingredient.  Shoot.  So, I'm drinking extra water, took an over the counter supplement that takes acid out of food (and therefore, my bladder) and unfortunately, had to take 1/2 a percoset.  I'm hoping it passes quickly.

Otherwise, I joined the coffee girls this morning at a beautiful new coffee shop in my little town.  I'm so glad that I've been able to meet these lovely women.  The more we learn about each other, the more I like them, and I hope that the feeling is mutual.  I have Fibromyalgia to thank for this gift of friendship.

Finally, my triumph of the day---On my way home, I stopped at my veterinary office to pick up two 16 lb bags of cat food.  For the first time since they've been on the food, I was able to carry it to the car, then up the stairs to my kitchen without straining any of the broken parts of my body. 

Hooray!
-S

Moving in the right direction

Greetings!

Summer has been good to me.  First, I get a break from the Fibromyalgia pain that plagued me over the winter (despite a small flare caused by stress from the person that I referred to in my last post). But more importantly, I can't say enough good things about the medical team that is taking care of me right now.  My physical therapist is truly committed to her profession and is far more educated and practiced than the last PT I saw.  The results are amazing!  I went an entire 4 days without taking any percoset, and it is very rare that I need to take more than one half of a pill in a day.  Keep in mind, I was up to as many as 6 per day just two months ago. 

Aside from that, I am so grateful to be past the first 6 weeks of the bladder instillations.  While the medical staff is amazing, the treatments are incredibly painful for me in the short term. However, the long term benefits are outweighing those rotten days after the treatments.  I'm about a month and a half into the Elmiron, which is the drug that forms a new layer on the inside of my bladder, making it impossible for new adhesions to grab on to my bladder walls. So...if I've lost you along the way...adhesions cause my own urine to absolutely burn while sitting in my bladder.  Because of the burning...I have to pee all of the time because the nerves in my bladder freak out and want me to push out everything that I can. A new coating on my bladder wall and the removal of existing adhesions from the bladder instillations mean that I won't have that constant bladder pain.  The problem is that the treatment is not necessarily 100% effective, but I will be able to enjoy a significant reduction in pain...and be able to eat some foods that are more acidic that I am desperately missing right now...specifically chocolate, tomato sauces (especially on pizza!) and coffee!

On another note, I finally had the MRI that was ordered a couple of months ago to figure out why the back of my leg is numb (basically, a line down the center of my hamstring).  I am super, super claustrophobic, so I was DREADING this one.  Since I'm finally getting off of the painkillers, I just didn't want to be sedated for this one.  It was a rough 45 minutes, but the tech was really great--she put a towel over my eyes before sending me into the tube so that I wouldn't see how enclosed I was.  It worked!  Afterwards, they burned a copy onto a CD for me and told me to take it to my next appointment (which I don't have scheduled), and then the doctor who ordered it can view it at that time.  In the meantime, she will be given the notes.  Well, at my PT appointment today, my awesome PT was kind enough to peek at it for me and read the notes, though she made me promise to act surprised when I hear it from the Dr, since she's not really supposed to tell me anything.  Unfortunately, the MRI found something completely unrelated...story of my life.  The disc between my 4th and 5th vertebrae is bulged and it's affecting something on the right side.  Unfortunately, it's my LEFT leg that has numbness.  So...we'll wait and see what the doctor says and what I need do to about that.  The PT said that they will most likely order an EMG next, which should pinpoint the nerve damage, and hopefully even diagnose where it came from.

For now...off to bed. 
Peace out,
-S

Waiting to take my 10pm medication

Hi,

I have a new medication called Elmiron, which is designed to treat Intersitial Cystitis (common name: Painful Bladder Syndrome, also; abbrieviated as IC).  Follow the link if you want more information on that.  Anyway, I took my first dose later than planned today, so even though I'm dead tired, I need to wait 9 more minutes before I can take my last dose.  So I'm passing the time by blogging.

I've sort of glazed over this in several posts in the past, but the full story is that I was diagnosed with IC in April of 2007. The treatment was to take Elmiron, but also to endure 6 weeks of having catheters inserted into my bladder twice per week, which then lead to the drug Heparin being pumped right in.  After holding it for 15 minutes, it comes out, and I go about my day.  The Heparin coats the bladder and the adhesions that IC forms, while the Elmiron takes its sweet time (2-4 months) to build a new and protective layer in my bladder so that I no longer suffer from all of the nasty symptoms and pain of this disease.  So....I did that, felt great for about a year and a half, and then my pain started coming back, I went to a bunch of doctors that said nothing is wrong with me, other than Endometriosis and a kidney stone, undiagnosing IC, etc...and then I started this blog.  The missing piece (maybe the final one!) is that my new PT, as well as my new Uro/gyno, suspect that the cystoscopy (knock me out, put little camera in bladder, examine pictures) that was performed to undiagnose my IC, was actually a prime example of the Elmiron working, aka: a period of remission of IC. Meaning, the adhesions were gone at that point and the Doctor should never have told me that he doesn't think I have IC. 

Fast forward to two weeks ago---I'm formally rediagnosed, have been put on a special diet that means no spicy, citrus-y, irritating foods or beverages.  Top things on the list: soda, coffee, tea, anything caffinated, and no CHOCOLATE!  Also, no citrus fruits, anything with too much Vitamin C, any tomato products, preservatives, or processed foods.  I was pretty sure life was over, but I'm getting by. I've even lost almost 10 pounds since I started on this diet., which is pretty necessary at this point.

Additionally, I started the bladder instillations again, except this doctor uses a medicine called DMSO...I have no idea what it is, but it's the only FDA approved combination of drugs approved for use in bladders for IC.  I was told it would burn more than the heparin because it actually attacks the adhesions, instead of just coating them, but I was NOT prepared for the pain the first one caused. The thing was done on Monday, I had to sit in the car for over 30 minutes before I could even think about driving, and I was destroyed until Friday.  Sadly, I had to miss a party that weekend with my soccer friends from middle/high school. By Saturday, I suspected that the Nurse Practitioner may not have paid attention to my latex allergy in my file, and the next Monday, I confirmed my suspicions.  They stuck a latex catheter into my bladder.  Yup, it's as bad as it sounds, maybe worse.  Keep in mind I can't take any anti-inflammatory drugs because of my bleeding disorder, meaning I just had to tough it out. So, this past Monday, they used a silicone catheter and I fared far better than week one, though it was still really painful.

One other weird side note:  There is currently a nationwide shortage of Elmiron, which has no generic, and the drugmakers are being really tight-mouthed about why.  Doctors were really baffled because they've never seen a situation like that.  Fortunately, my hubby was kind enough to spend a morning calling literally 30 pharmacies and was able to get me 89 pills (just 1 short of a full month's prescription of 3/day). I was taking the pills 2x/day, figuring it will buy some time for the drugmaker to catch up (and using Canada as a last resort), but the supply is now rolling back in.  I don't know what happened, but from my days in the business world, I know someone's head is rolling.

Anyway, aside from that, my PT's job right now is literally to make more space in my abdominal cavity, by breaking up adhesions, fixing my pelvic floor, and using neat tricks like kinesio tape. She also hooked me up with a trial TENS unit, but ultimately got me a pretty awesome INF unit that is FINALLY helping to drastically reduce my need for Percoset that I despise to no end.  Example:  about a month ago, I had to take 6 in one day.  Today, which was kind of a bad day, I got through with just 1/2 of a pill! 

Otherwise, I still get massages every 3 weeks.  Today was that lucky day and I felt pretty good when I left. She really does a wonderful job dealing with my Fibro/Myofacial pain syndrome, and also gets to help out with some of the abdominal adhesions.  Once I get back to work, I'll definitely be there once each week.

Overall...if all goes well, the IC could be considered to be in a period of remission within the next month or two.  Additionally, my endometriosis could be headed the same way.  Plus side: I'll feel great.  Downside:  I'll have to find some kind of a job again...which I look forward to, but I still don't know what I want to grow up, especially since I've done a lot of growing up in the last year and a half!

Hope you enjoyed what may have crossed the line into TMI on my bladder. :)
Time to take that pill (which, btw, is Elmiron).
-S

This is my "Life isn't fair" post

Hello,

I truly have come to believe that keeping a positive attitude is the only way to get through the type of health issues that I'm dealing with, but that does not mean that the "life isn't fair" moments don't happen.  Here's my kick-in-the-pants for the day.

As mentioned, today is the bachelorette party that I was really looking forward to attending.  The bachelorette is a girl that I played soccer with from elementary school until I moved in high school.  If you read my previous post on soccer, you'll know that this means that all of my soccer friends from back then will also be there.  I had already decided in my initial RSVP that I should skip the pre-dinner activity and the late-night barhopping so that I don't destroy myself for a week because I overdid it yet again.  My plan was to attend dinner and then the comedy show before heading home. A couple of hours ago, I realized that there was no way that I could make the two parts of the night that I planned to attend. I debated attending dinner only, then the comedy show only, and then I finally decided I just couldn't make it.  So, I sent a text message to the party organizer explaining the situation.  As the message was going through, I missed an incoming call from my sister.  I ignored it for the moment because I was really upset about missing yet another thing in my life because of Fibromyalgia/Endometriosis/Chronic Pain, etc. etc.

After my hubby helped me pull myself together, I was ready to face the world again and listened to my voicemail.  My sister told me that she was coming into Wisconsin  from Minneapolis for the evening, (coincidentally for another bachelorette party) but that she wouldn't have time to meet up with me, and that she didn't want me to feel like I had to head into town anway, since I live about 35 minutes away from where she will be.  Little did she know...I was going to be inches from her!!! It would have been nice to see her for a couple minutes. After becoming upset and pulling myself back together and calling her back, she told me that her husband (a comedian) came with her and would potentially be doing a very short guest spot at the comedy club tonight...yup...the same one I was planning to attend. Seriously?????  Ugh!!!!!  She did text me a few minutes after we spoke to let me know that he wouldn't be doing the spot, but wow...the universe kicked me while I was down!

So, in the end, I'm sitting on the couch, watching TV and trying to figure out what the hubby and I can do tonight to make my day not totally suck.  My options are of course, pretty limited since I don't feel well, but my husband is a fantastic cook and we like watching movies, so my guess is that this will be our night. And you know what?  Now that I've worked through the emotions, I'm ok with it.  Here's hoping I can make the actual wedding.

Party on!
-S 

Insomnia...

Hello,

It's 3am and I finally gave up on sleeping tonight. This happened about 2 weeks ago as well. My husband's alarm went off at 6am and I was wide awake. Boo. I have a feeling this is going to be a very long post. :)

Fibromyalgia is a bitch...I don't think it can be put more bluntly than that, huh? The pain makes one tired beyond belief, but the pain also keeps one awake at night. I can also blame some of this on my new prescription, called Savella, which was designed specifically to treat Fibromyalgia. I was previously taking Cymbalta, but I found that other than making me sleep 18 hours a day for the first few weeks, it had absolutely no effect on me. The dosage is designed to gradually step up over two weeks time, and today was day 4 for me...another step up day. I took my morning dose, got ready for the day, checked in on my hubby who was home sick, and hit the road (in the hubby's car that only carries liability insurance) to visit my sister. about 3/4 of the way there, I became EXTREMELY dizzy...on the interstate...in construction. At that point, I decided to continue to my sister's house. The first hour of my visit brought dizzy spell after dizzy spell. Thankfully, my sister fed me a ton of food and I got to the point where I only got dizzy when I moved to quickly. So, the drive home was a bit of a gamble, but I was ok. The rest of the evening through right now still finds me a bit dizzy. I skipped my evening dose of the med and I'm calling the doc at the clinic's opening time tomorrow.

On a completely different note, my Med Alert bracelet came today. I made the mistake of ordering the chain an inch too long, but it's nothing my craft pliers can't fix. Overall, the thing is pretty darn ugly. It's a stainless steel plate with a logo on the front, attached to a utlitarian chain. At least I was able to get the logo in lavendar. I've seen websites that sell beaded chains to dress it up, so I think that I'm going to dig out my beads in my craftroom (the upside of not being able to have children yet is that I have a 10 x 12 craftroom of my very own) and try to make a cuter bracelet to attach to the plate. And, speaking of the plate...this is what is engraved on the backside:

CALL 1-800-XXX-XXXX

MILD VON

WILLEBRAND'S.

ALLERGIC CIPRO,

AMOXICILLIN,

SULFA. OTHERS.

(MEMBERSHIP # HERE)

I'm not sharing the phone number and my membership # on the internet, but you get the idea. Basically, they listed the most important info and then the "OTHERS." refers to one additional drug allergy that the company keeps on file, as well as a list of the other pertinent conditions that I have. For this company, I listed Endometriosis, Fibromyalgia, and Intersitial Cystitis. Overall, I hate that I have to wear it, but I really love that I have the piece of mind that if something happens to me where I can't communicate, this information will be given to paramedics.

Another thing that this reminds me of: I was talking to my brother-in-law last year about the fact that I was going to get a medical id bracelet. He happens to be a paramedic, firefighter and a Registered Nurse who picks up shifts in the emergency room (a/k/a: hero!). He did tell me that many folks in those professions do not think to check for a medical id bracelet when a patient/accident victim is young and healthy looking. After we had this discussion, I did a little internet research and found out that many people/professionals recommend contacting local paramedics to let them know of a condition. In my case, I don't believe that anything I have is serious enough to make this contact, but I figure someone out there may find the info helpful.

Otherwise, I plan to research chronic pain and Fibromyalgia websites that were in a booklet with my new prescription. My hope is to find even more ideas to manage this mess that I'm stuck with.

All right then...back to the insomnia. Please send me any non-pill-popping home remedies that you have!

-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

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

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

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

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

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