This is the end

Hello,

I haven't posted in quite awhile.  The reason is because I feel like my adventures in this realm are drawing to a close. No, sadly I'm not cured. But, the reason that I created this blog was to be able to keep my family and friends updated about where I was in this battle against pain. The blog served its purpose well and even exceeded my expectations. Acquaintances turned into friends because we were fighting similar battles.  Friends and family went out of their way to send me advice, encouragement, inspiration, information and love.  I can't even express how grateful I am for everything. I'm beyond honored to know that I've even been able to help a couple of people who felt trapped, lost and angry within their own struggles.  It is on this note that I am going to close this blog and move into the next chapter of my life...Because you see, I've reached the point where I can put my health problems in the background and live life again with minor interruptions versus everything you may have read about over the last couple of years. Therefore, if you would like an update from me, please contact me directly and we'll have a nice, leisurely chat.

Love to all of you,
-S

I'm here...

Hi,

I'm here and I have a lot of updates to give from the last month, but now isn't a good time for me to provide a huge update. So for now...I'm ok, but it's been a tough month since my meds were switched around. In the long run, I think it's going to be a good thing, but my energy has been zapped by nortriptyline for Fibro and Tramadol for my other chronic pain.  Scar tissue and adhesions from endometriosis have been causing me more pain than usual.  Through physical therapy myofacial work, we can tell that I have adhesions on my intestines as well as my lower left abdominal cavity.  And then, just to top it off, my Physical Therapist is pretty sure that I'm having ghost pain as a result of having my ovary removed in 2007.  How dumb is that?  Sadly, there aren't any specific treatments to fix any of this.  I just have to keep up with PT, take my daily meds, keep exercising, .and know when to take it easy. Oh yes, and there's still the Interstitial Cystitis.

I had a really rough weekend that involved a lot of couch time. Thank goodness my hubby is so good about picking up the slack...of which I leave a lot!

-S

So much to share...

So much to share, but I'm too tired to share it all at the moment.  I have a new medication that is helping a lot, but it's making me sleepy.  Plus, I'm still fighting off the tail end of this cold, so I have to come back to all of you another day to get all of the updates together.

For now, I guess I can sum it up as this:  I'm to a point where it is finally easy to exist again, but living is really, really hard.  Much better than the days where I was fighting just to make it to the next minute without going crazy from chronic pain.

Over and out.
-S

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

Still recovering

Hi,

Not much to say today. My stomach is still a mess, but at least my pelvic pain seems to be more manageable.  yoga might be in my future for today. I haven't made an appointment with the GI doc yet, but I will today, I swear! The next plan is to go back to my primary care doc to review all of my meds and figure out the best way to treat my Fibromyalgia now that I've known about it for about a year.

Short and sweet.
-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

Update

Hi,

The last week had some pretty rough moments.  Endometriosis.  I was supposed to take the Lysteda once more this month to see if I truly had an allergic reaction, but I couldn't make myself do it. That means that I went through "that time of the month" with nothing to help my Endometriosis.  I'm positive that it has spread again because I hurt from my ribcage to my thighs, mostly on the left side, which is the side that's all scarred up and missing an ovary.  Since IC is connected to this, I also suffered through a flare of that for the first couple of days. Blech. Luckily, I'm on the upswing again...for another 28 days or so.  And as the weather changes, my Fibro is making itself known.  Also, just for kicks, my body decided to let my ezcema out early this year. All of this led to one "it's not fair breakdown".  Surprisingly, I got over it in less than five minutes and went about my day after that. They used to last hours and hours, so this is a way more efficient way to go about it. :)

Otherwise, life is super busy right now and I'm getting a little worried that I'm not going to be able to keep up without a major setback.  As prevention, I'm keeping up with my PT exercises for my slipped disk and doing yoga every single day that I can drag myself through it to stay flexible(ish), and to get stronger(ish).

-S

Its beginning to look a lot like Fibro....

Well, here we are again. Fibromyalgia season.  My wrists and feet are killing me, and I am hyper-aware of nearly every joint in my body.  Plus, tomatopocalypse has not yet passed even though it's been a week,and my illiopsoas is KILLING me.  That's a whiny start to the day, I know.  It's this time of year that I wonder why the heck I still live in Wisconsin!  I checked the current temperature before getting out of bed and it was only 39C! (What ever happened to the degree sign on the keyboard??? Wasn't there one back in the 80s?)  Anyway,  I woke up at about 5:30 in tons of bladder and illiopsoas pain and made my husband help me stretch the muscle, but it didn't help.  Then I hooked up my INF unit, and that really didn't help.  Then, I piled on several layers of clothing and went upstairs to stretch more and do a bit of yoga.  That kind of helped.  I'm doing my best to avoid percoset, but I think there's a 1/2 pill in my very near future.

But, speaking of Wisconsin, I have plans to head to a Brewers game tonight.  I've only gone once this year and while the company was fantastic, I was in so much pain from sitting in those awful stadium chairs and riding the 2+ hours in the car.  After a couple of disappointing last-minute cancellations where I gave tickets away, I decided I wasn't going to any more games this year.  Then we canceled cable and the Brewers started playing really, really well so I'm dragging myself tonight.  I hate that I'm going into it knowing that I'm going to regret it, but this is me trying to have a life that appears to be normal.

Here's hoping for a less whiny tomorrow
-S

It's time to give back

I truly believe in the concept of paying it forward.  While I haven't been able to give back much in the last few years, other than the occasional monetary donation, today my focus shifts to  helping others while I'm (slowly) looking for work.  A friend of mine from college recently became the Executive Director of a food and clothing pantry, so I'm spending my afternoon getting the grand tour of her new pride and joy, bringing five bags of clothing donations with me.  While sorting and washing five bags of clothing is a meager start to giving back, I'm hoping to become more involved in various charities  in the near future.  One of which will be the Great Lakes Hemophilia Foundation who paid for my Medic Alert membership and my Med Alert bracelet, which contains not just my Type I Von Willebrand information, along with some of my drug allergies, and a number to call, which would quickly provide medical professionals with the very long and complex list of my conditions, allergies and required dosage of clotting medication if I have a major bleed.

Aside from that, I should clarify something based on  real life conversations that I've had with friends about feeling better. While I feel quite good right now, there are still moments, hours and days that I feel terrible, and this will be the best I get to feel.  The reason I share this is because I've met quite a few people with similar issues to mine and I don't want to paint a picture that we can be "cured".  However, in stating this, it's also important for me to state that there's no reason to pity me.  I truly live life to the fullest on my best days, which is something I've never done before.

Here's to a good day!
Sarah

Tomatopocalypse: Day 4

Greetings,

I'm still suffering the pain of eating chili on Sunday.  I'm officially calling this event the Tomatopocalypse.  It's getting better, but it's still very, very annoying.  Now begins my official period of mourning for the loss of tomatoes in my life.  Well, maybe not a complete loss.  Teeny bits of salsa, a nibble of pizza, and a sip of a bloody Mary will probably still happen from time to time.  So, if you have any recipes for great low-acid hearty dishes to replace chili and pizza in my life, PLEASE send them to me.  My sister Lizz (love you to death!) instantly sent me a recipe for white bean chili with chicken that I can actually eat.

Otherwise, eating is getting pretty boring.  I'm afraid to eat almost everything, so my diet is super limited right now.  I literally had a hunk of french bread for dinner Monday night.  Last night, I got brave and had garlic bread. My last two breakfasts have been french toast, made with vanilla, cinnamon and coconut milk. The hubby and I are going to sit down and figure some tasty things out so that I can add more variety to my diet and make sure my nutritional bases are covered.

Bon appetit!
-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

An anniversary

I had other plans for a blog post today before I realized the date.  I'm "celebrating" a dismal anniversary today....the beginning of the end of my former lifestyle.  Fortunately, I'm having a pretty good day!  I ran into an old coworker  that I run into frequently.  I recall telling him earlier this year that it looks like I'll never be able to get back to work.  Then, as things progressed through the summer, I would get to tell him about how hopeful I was that things were looking up. today, I saw him while I was standing in line at Starbucks and I got to tell him how I'm feeling better and seriously considering finding part time work so that I can do something while still taking the time that I feel like I deserve (right or wrong) after losing the last couple of years of my life.  Then I confessed that my next stop was my massage.  So...I went from 60+ hours per week of work plus full time school, to completely bedridden, to enjoying a leisurely life as a housewife...talk about living life in extremes!

Wow, I just said "I" a lot.  That's acceptable considering that it's my own blog right?????  :)

Anyway, my Facebook status post kinda sums it all up, so I'll just copy it here:

Two years ago today: officially went on a medical leave that left me completely completely bedridden for over two months. One year ago: Left my job due to ongoing undiagnosed illness and chronic pain; doctors were still baffled as to what the heck was wrong with me. Today: diagnosed and treated and wearing a spiffy medical ID bracelet while on minimal medications...spent the day so far shopping and then enjoying Starbucks and a massage with manageable pain levels.

This phase of my life is starting to be pretty awesome...you might see me milking it for a bit
-S

Back to nature

Happy Tuesday!

Today started off great.  I woke up early after about 6 solid hours of sleep (which is a TON of sleep for me these days), and put on yard work clothing to go outside and weed the yard along the roadside.  We live in a very wooded and weedy area, so this is no small task. In two hours, I pulled out everything that wasn't a hosta or day lily on the first ten feet of my lot, and I am quite proud of myself.  After raking up the spots that were left in bare dirt and taking the last wheelbarrow of refuse to the fire pit...which is sadly, also in need of serious weeding...I felt like I had accomplished a ton.  I've definitely learned that the trick is to look at the accomplishments and not what hasn't been completed. In this case--my new and beautiful strip of yard instead of the rest of the acre that I need to finish.

That's not to say that I'm not frustrated from time to time.  I manage the most of the basic household chores again, which I'm sure my husband appreciates. Of course, there's always more to be done. My bathrooms (a full bath, 3/4 bath and powder room) could use a huge scrub-down, the finished part of my basement needs a good dusting and vacuuming, and my main living area needs a complete move-the-furniture-and-clean-behind-everything treatment. Oh, and the laundry...that darn laundry. Sometimes I need to remind myself that one day at a time isn't enough of an outlook...I need to take things one hour at a time and celebrate what I have accomplished, then turn on the blinders to the rest.  My health still demands downtime and I'm not about to ignore it.

Guess I'll watch some TV
-S

My car has become my enemy

Hello, 

While I've been happily continuing my foray back into the world, I'm learning that I have a few more limitations. One of them is that time spent sitting in a car aggravates my endometriosis.  I have adhesions on my Illiopsoas muscle, which you can see specifically on the area labeled #2 in this diagram.  Sitting for hours on end in a car causes strain to the muscle, which is in turn aggravated by the adhesions.  The problem is that the adhesions really can't be surgically removed, and even if they are, they will grow back.  So, my wonderful physical therapist worked on the muscle through her lunch hour today and also gave me a great stretch that will help to keep the muscles from spasming.  So, for those of you fortunate to take road trips with me, you'll find me begging you to pull over once in awhile so that I can stretch. 

Unfortunately, I'm still hurting this evening, but between the facts that I have some tools to manage the pain, as well as a break from driving anywhere for a few days, I'm feeling pretty good about the long term management of the pain. 

-S

My September 11th post

Good afternoon,

Today is a somber day for Americans, to say the least. September 11th, 2001 is the "where were you when...?" moment of Americans of my generation. The reason I feel like talking about this moment on my blog is appropriate is because thinking about it makes me think of a time in my life when I was sure that I was invincible. Here's the story...

I had just turned 23 about two weeks prior to that fateful day. My boyfriend of about five years proposed to me just before guests started arriving for my birthday party. My career was taking off, we were looking forward to standing up in the wedding of our two best friends and I was healthy. And all of that changed in one morning.

I was at work, rolling in a few minutes later than planned as usual. A coworker told me that a plane had crashed into the World Trade Center. We were puzzled, trying to figure out how a pilot could make such a fatal error. Since I was the Internal Audit Manager of a call center, part of my job involved monitoring phone calls. Every call that I monitored in the next few minutes involved a customer from a different part of the country talking about the plane crash. As the thought of terrorism was forming throughout our nation, I called my fiance, who was at home to tell him to turn on the TV.  We spoke for a few minutes, trying to make sense of what was happening. It was then that he went silent and suddenly said, "Oh my God. A second plane crashed into the other tower." We sat in silence for a moment. I don't remember what we said next, but I eventually got off the phone to try and find a radio in the office (we didn't have internet access back then).  This was the first day in my life that I truly understood how precious life can be.

I suppose that feeling probably faded over the next year as I planned my wedding and finally celebrated my wedding day, followed by a wonderful honeymoon and then the purchase of our first home. Of course, I've received numerous reminders of my new understanding in the years since due to my illness.

So today, I try to recommit myself to remembering just how precious life truly is. Not because I should, but because it really is.  My ancestors came from the Netherlands, Germany, Poland and Austria (as well my Native American relatives who were always here) to give me the life I was blessed with, and many fought to protect my freedom they so strongly believed in.

Never forget.
God bless
-S

Trying to stay ahead of the pain

Greetings,

I'm not sure what started it, but my abdominal and pelvic pain has been  intensifying over the last few days.  Fortunately, I now have a ton of tools to help cut it off.  I always start with yoga and specific stretches so that the muscles from my abdomen through my legs don't freak out in turn.  If that happens, I'm down for a few days and it becomes very tough to bounce back. I also have my interferential device (which I've previously referred to as a TENS unit because I didn't know the real name for the thing).  Anyway, they are very similar, but I'm told the interferential device has the same, aka better than a TENS, technology that is used in the PT clinic.  The purpose of the machine is to confuse pain signals from my nerves in my abdomen, which gives me a significant amount of relief, though unfortunately it's temporary. My next plan of attack is to restrict my diet even further so that I'm not contributing to the Intertitial Cystitis.  If I make it through the weekend, I have physical therapy on Monday, which should effectively work as a "reset" button.

As a recap if you're just joining me: Pelvic pain is an ugly and complicated beast.  Contributing factors in my case are pain from Interstitial Cystitis, pain from Endometriosis, and also from scar tissue left behind in my abdominal cavity as a result of both the diseases and the surgeries associated with them. Also, my Fibromyalgia causes my brain to constantly send pain signals to my nerves and they are very difficult to shut off.

Aside from all of this, I'm still extremely tired most of the time, so forcing myself to do the workout that I need to do is darn near impossible some days.  But, I'm going to power through that and then hopefully have a quiet day on the couch.  We have lots going on this weekend, so I'm hoping to make it through everything, and perhaps even enjoy myself.

Updates to follow...
-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

Burning off energy

Happy Wednesday!

It is Wednesday, right? My schedule is so off this week.  Anyway, I am still having trouble falling asleep, but I'm finally able to sleep in a bit, so I'm not totally sleep deprived.  That leads to progress!

Yesterday, I started working on all of those unpleasant spring cleaning tasks that I haven't really been up to doing in the last couple of years and have had to leave to the hubby.  I cleaned up the things stored under the entertainment center (Wii accessories, books of DVD's--mostly covered in tufts of cat fur), cleaned out heating vents, dusted every little thing that is oft forgotten.  Today, I cleaned the toaster inside and out and am sorting through all of the things that we don't use anymore to figure out what I can sell on Craigslist. 

Unfortunately, I'm fighting a headache today...not sure if it's a migraine or allergies, but it's starting to slow me down.  Hopefully it's something that can be helped by a quick 1/2 hour of yoga to stretch out my neck and back. 

-S