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

New features

Me again,

If you  haven't noticed yet, or are just joining me, my blog now boasts some new features. Cosmetically, I updated my tagline and added a great pic taken by my brother-in-law, Ryan Wiz a couple years ago when we were hiking with his family. He's quite talented and always makes me look my best (though we have the occasional artistic disagreement about my perception vs. his over a picture of me-HA!). But, I digress. For sharing, you will find a few social networking options at the bottom of the page.  I've had several requests to pass my blog along, and I'm always, always, always happy to hear that someone would like to share my world with someone in need. For fun, there is now a "Reactions" option at the bottom of each post.  Just click a checkbox you are so inclined (and I hope you are!).  The feature doesn't identify you, and I'm never offended if you choose "disagree" since I chose the reaction options myself.  I happen to like feedback, and I love knowing that someone took time out of their day to read my humble little blog. 


Much love,
-S

Easiest trip in years!

Hello again, my friends!


This weekend was a smashing success, both healthwise and fun-wise for me. My poor hubby was still sick Friday and most of Saturday, but he's almost back to normal today.


We left a bit later than planned for Minnesota on Friday, but packing and driving went smoothly. In 4 1\2 hours, I only had to stop twice to pee, which is a TOTAL triumph for someone with Interstitial Cystitis. Meeting my Nephew, Harvey was beyond joyful, as was seeing my baby sister in action as a beautiful new mother. We had a great dinner (my portion cooked according to the IC diet) and plenty of time to coo at Harvey and catch up with Anne and Nick. Later, I received a surprise visit from my other sister, Zan, her hubby and their baby hedgehog, who is totally adorable. This surprise visit was beyond exciting because they weren't able to make the wedding and I didn't think I'd see them.

Saturday had to have been the most active and most busy day I've had in two years. We got up early and were treated to a homemade breakfast, then Anne and I left to shop at this amazing designer outlet shop. I honestly couldn't have handled shopping here 2 months ago. The store is gigantic. Just standing for that long and flipping through the racks would have been too much for me. Carrying the 10 items I wanted to try on, along with the boots I found and was closely guarding would have been out of the question. Then trying everything on and making round two through the rest of the store would have put the final nail in the coffin. But-I made it and I found some beautiful things, including a dress I wore to the wedding.


After that, we stopped to pick up a tub of bleach so Anne could highlight my hair and then style it for the wedding. 6 months ago, I wouldn't have been able to sit through all of that. After that was done, we packed up the car and headed to the hotel to get dressed for Anna and Chad's wedding. Getting ready went smoothly and I had a chance to stop by and hangout with two of my other nephews before we headed over to the ceremony. When it was time to leave, we ran into some relatives and ultimately decided to walk the 5 blocks to the ceremony rather than wait for the shuttle. This would have been impossible a year ago in even my most comfortable shoes, but I was wearing 4 inch (maybe even 5 in) stillettos. They were comfortable enough, but I have to take small steps in them to avoid falling so it took a little longer to walk there.

The ceremony was beautiful (as was the bride!), and dinner was fantastic. Though I wanted to sit for awhile when the dancing started, my 3 year old nephew kept pulling me onto the dance floor. While I was almost totally pain free the whole night, I got really tired around 10pm and we had to leave way earlier than planned. I attribute this to a few things 1) I had a full day, but the biggest factors are 2) I can't have coffee, which I relied heavily on until 3 months ago and 3) I wasn't drinking. Though I never drink much anymore (exception: Colorado), 2 drinks is enough to fuel me. Unfortunately, I just couldn't risk a flare of my health stuff and a rough Sunday because I drank.  However, aside from that accomodation, I didn't have to worry about pain or my various conditions even once throughout the day!

Anna, Chad, the hubby and me

Now, we're heading home and have about 1 1\2 hours to go. Can't wait to get home and have a lazy evening on the couch.

Here's to more carefree weekends!
-S

Quick update

I'm alive, severely sleep deprived, but feeling much better overall. 

I only managed to sleep until 10am yesterday, and then inexplicably woke up at about 1am after falling asleep at 11pm last night.  I was in and out of sleep for a few hours, and finally gave up and got out of bed sometime between 4:30 and 5 this morning.  On the bright side, I got a ton of things done, including  a 2 hour morning coffee date with friends.  Unfortunately, I'm not sure that I'll be able to sleep well tonight, which may make me a cranky girl tomorrow.  Luckily, if all goes according to plan, I'll be at my sister's place by 6pm where I'll meet my newest nephew, Harvey Mason and then enjoy a nice dinner with her family.  That will shake out the crankies. Then I watch my other brother marry Saturday.  Hooray (and "Hi" Anna--can't wait until you officially join the family)!!!!!

Not a bad summer considering I've gained two awesome sister-in-laws and another nephew.

-S

Today was a rough one!

Good evening,

Well, the last 24 hours have been a trip.  It all started when I was changing the layout of this blog last night, then intensified when I was finishing up the "Tuesdays with Morrie" post.  I was really nauseated, and although I was tired, I couldn't sleep.  Usually, I can get myself to sleep by 2am at the very, very latest with the help of amitryptaline and tizanadine, which help my fibromyalgia, but I felt so sick that I just couldn't fall asleep.  I got up a couple of times to walk around, use the bathroom, eat crackers and give the also restless cats a 2am snack, but nothing helped.  I sat up, read, lay down, sat up...lather, rinse, repeat. At 3:45am, my husband woke up to find me curled up in a ball.  Since he gets up by 4am at the latest, he got up and got ready for work, then left about 4:15am (He works 10 hour shifts and drives 3 hours round trip, so he prefers to get an early start).  I drank a little water and felt a little better, so I got up and did a 45 minute yoga workout and then did some of my physical therapy exercises.  I took it easy since I hadn't slept and my balance was definitely a bit off. 

So, by 5:30 am, I moved myself up to the couch with pillows from the bed and a down comforter, closed all the curtains so the sun wouldn't bother me and tried to fall asleep again...to no avail.  The nausea acted up again and my guts were churning. It was becoming pretty obvious to me that I was once again having an allergic/adverse reaction to a prescription drug.  I made myself some peppermint tea, and while the smell helped, I just couldn't put down any fluids. So, I called the Urogynecology office at 8:30 and tried to wait patiently for a call back from a triage nurse. Two hours later, I was out of patience, so I called back and spoke directly to a nurse in the clinic, who took my info to the doctor. She called me back at 11:30 to let me know that (long story short) between my info and their research, we're just not quite sure if the suspect medication, Lysteda was the cause of the reaction. My symptoms are extremely rare, but I'm also that person that has extremely rare reactions to certain drugs. The final solution was that they called in an anti-nausea pill.

Now, the problem was how to get it.  I hadn't slept all night, could hardly move, knew I couldn't drive without throwing up.  As mentioned, my hubby is an hour and a half away at this point. Fortunately, a good friend of mine lives close to both me and my pharmacy and was able to pick up my prescription and drop it off at my house.  She is my hero!!!!!  Huge, huge thank you!!!!!! By total chance, it fit perfectly into her day since she had some errands to run and had to take her adorable baby girl to an appointment. 

But back to the Lysteda.  We're a little concerned because the drug is prescribed for my endometriosis to reduce the pain caused by bleeding adhesions that reside on pretty much every organ and wall in my abdominal cavity, and I only take it 5 days a month.  This was my 3rd month on it. The first two went beautifully and did a great deal to reduce my pain levels. Therefore, the drug could have interacted with some other medication, either prescripton or over-the-counter. We agreed that I would try it once more next month (with the anti-nausea pills handy beforehand!) to figure out whether this is a reaction, or maybe just some weird fluke...which should surprise no one at this point. :)

Anyway, the hubby came home two hours early, which is when I finally managed to nap for a couple of hours. I still wasn't feeling great, but I could tell I was on the way to better.  Having him there definitely helped because I'm always afraid to go to sleep when I don't have all the facts about what's going on with me.  By about 8pm, I had managed to eat a small piece of homemade cheesy bread (I am from Wisconsin!) and was coming back to life.  Since then, I've been pounding down water and drank a 2-serving bottle of Organic fruit juice. I'm sure my Interstitial Cystitis will act up a bit because of it, but I feel sooooooooo much better now that I'm rehydrated.

Right now, I'm waiting for the pills to knock me out.  One would think that 2 hours of sleep in the last 39 hours would allow me to fall asleep with no problem, but that is somehow not the case.  All of this said, I'm pretty darn happy that this is the only day I've lost out on in recent history because I wasn't feeling well.  However, the pills are kicking in and therefore; I leave you all before I start typing crazy nonsense...which I'm sure you'd enjoy. 

Maybe next time.
Nighty-night!
-S

My long overdue "Tuesdays with Morrie" post

Greetings again,

Now that I'm feeling a lot better, I'm able to get around to the posts that I've been meaning to share for a long time, but never did.  This one is about how the book, "Tuesdays with Morrie" by Mitch Albom got me through the worst of times.  My husband received the book as a gift from his Mom years ago and I never allowed myself to read it because I knew it had a sad ending and I already had too many sad things happening in my life. Once I finally read it, I dog-eared the heck out of it and now I keep it on my nightstand next to a small book of Bible passages for those moments when I need inspiration and strength the most. For those who never read the book, it is a true story about Mitch Albom's visits with his dying college professor who served as a mentor to him back in college, and then again as he was dying to share lessons on life itself.  I humbly admit that I can't adequately summarize the power of the messages within the book, but I want to share some of the quotes that pulled me through the days when I was absolutely paralyzed with pain.  And dear lord, I hope I'm not breaking some kind of copyright law by sharing my thoughts on this little blog of mine...

"I give myself a good cry if I need it. But then I concentrate on all of the good things in life"

"Everyone knows they're going to die...but no one believes it. If we did, we would do things differently"

On aging:  "You have to find what's good and true and beautiful in your life as it is now. Looking back makes you competitive. And, age is not a competitive issue".   (This one really helped me to accept that I can't go back to the time when I was 24, newly married and completely healthy, and I was finally able to find the joy in my life during the worst of the pain)

On living a meaningful life:  "Devote yourself to loving others, devote yourself to your community around you, and devote yourself to creating something that gives you purpose and meaning."  He later notes that money is not a part of a meaningful life. 

If you don't own this book: Buy it. Read it. Live it. 

We'll all be better for it.
-S

An OK weekend

Hello again!

Another weekend is winding down.  This one was far less eventful than planned.  My husband is getting better, but still sick.  Unfortunately, I brought myself down a little bit.  As I've mentioned, my success in turning my health around recently has largely been due to the fact that I've been sticking to a very strict, low-acid diet.  Well, on Friday (my birthday), I didn't want my husband to cook, so I decided that I'd order pizza. Note that I can't have tomatoes AND I'm lactose intolerant.  Also, I can't have onions, but decided to treat myself anyway. At least I skipped pepperoni (not allowed to have processed meat). I figured that the Elmiron (the long term med that coats my bladder to prevent new adhesions) was probably working pretty well, and that if I took a dairy digestive supplement, and this other over the counter aid called Pre-lief, which takes acid out of food, I'd be fine.  Totally wrong.  However, the punishment I received was pretty manageable and didn't take me back to square one.  Whew.  Sadly, I'm admitting to myself that pizza is something I probably won't be able to enjoy in the future. So...I had one (ok, two) last pieces today at my Nephew's birthday party. I have PT tomorrow and will have to admit to my physical therapist what I did to myself, but hey...we're all human.

In other news, my official job search starts tomorrow.  My wish list is pretty demanding.  Part time, semi-flexible hours, pays fairly well, allows me to apply my experience and degree, ideally temporary.  I'm trying to figure out how to write my cover letter to explain why I haven't worked for the last year and a half without giving away the fact that I have health issues, but I'm sure I'll work that out.  Then on Friday, I get to meet my new Nephew, Harvey before attending my stepbrother's wedding on Saturday. It's going to be fun to finally get to take a weekend trip without having to worry about everything that I had to worry about during my travels just a few months ago.  However, I do need to worry about the person who has been purposefully causing ruckus in my life, so I'm gearing myself up for that in hopes that I will handle the situation with grace (since the other person has not thus far and has stated they will not change), as well as not allowing it to cause another flare of my autoimmune disorders. After that, I have another wedding shower, my husband's company party,  a belated birthday celebration, two class reunions (I attended two different high schools and am meeting up with some friends from the first one in a non-official event), my 9th wedding anniversary, and another wedding coming up in the next couple of months.  That's just the special events in addition to the other plans on the calendar. So, I need this streak of feeling good to continue for awhile.

Woohoo!
-S

Just got older, but I feel much younger

Well, today is my birthday.  I turned 33.  While things didn't go exactly as planned (by far), I'm loving the outlook that I've chosen to have on life.

To start with, I feel absolutely great today!  My pain is as close to 0 as it will probably ever get, so I feel absolutely blessed.  Two years ago, I felt like I was 100 years old.  Last year, I felt about 120 years old. Today, I feel like I could be 25. It's pretty amazing. Unfortunately, my poor husband is dowwn for the count with a terrible cold, causing us to postpone all celebration. Well, all except the two little cupcakes that I brought home from Starbucks when I went out to get my free birthday drink.  Also, I am just in awe at the sheer number of well wishes that I received on Facebook today.  I realize again how many people have supported me in various ways over the few years and I am beyond grateful. Even the smallest tokens of support  really helped me to get through the worst of times. 

Cheers!
Sarah

A normal day

Greetings once again,

I am slowly learning to stop fretting about health stuff.  I was able to get through my entire day yesterday without my health affecting me at all.  First, I took a tour of a historical landmark in my town. Although I had to sit a few times throughout the tour, I felt great!  Next, I had a massage, which really helped me with the neck pain that I've been dealing with lately.  Unfortunately, there were two things that cannot be blamed on my health, but rather a result of rushing around to get places:  I grabbed the checkbook that doesn't have money in the account to pay for the massage, and I left my necklace behind.  Luckily, these were the worst things that happened to me that day.  Having "normal" problems is kind of cool.

Later that day, I went to the girl's night dinner in which I had to call ahead and ask about the menu.  The host/hostess were incredibly kind in making sure there were things for me to eat. However, I couldn't pass up the chocolate soy ice cream with toppings of oreo cookies and chocolate chips/sprinkles for dessert...and some dessert wine.  I shouldn't have soy, oreos, or chocolate, but at least it wasn't dairy-based so I didn't have to worry about my lactose intolerance. :) Surprisingly, my medication for my Intersitial Cystitis (Elmiron) must be kicking in because I didn't have any of the bladder pain I expected from leaving my diet. Aside from that, I got to know some fantastic  women a little better, and was able to share a bit more about myself.  It was an all-around good time.  To top it off, these women have only known me in a pretty heavily medicated state, and all commented that they can see just by looking at me that I'm feeling much better.  I think best of all is that fact that they are a genuine group of women, free of petty drama that will help me to continue on my path to live in the positive, which should help to maintain my heatlh and overall outlook on life.

Also, I've found a couple of part time jobs that I'd like to apply for.  I'm giving myself the weekend to decide if now is really the time to pull the trigger.  My goal is to find something that will let me use a part of my degree that I haven't been able to use in my previous career, such as marketing. Also, the hours need to be flexible so that I can work around appointments and the inevitable days when I'm going to be stuck in bed. It will be nice to turn on that part of my brain again.

For today, my poor husband is home sick, so I'm doing my best to take care of him for a change.  I owe him. :)

-S

Passing for "normal"

Greetings for a third day in a row!

So, I'm at a point where I'm trying to pass for "normal" in society again.  This morning, I met up with a group of mommies that I hang out with on Wednesdays and took a tour of a historic place of my town.  I'm embarassed to say that I've lived here over 8 years and haven't seen it yet.  Anyway, it's kind of funny that I hang out with the group since i don't have children.  However, they don't seem to find it odd since they are aware of my health situation.  But what was such a blessing to me was that I was able to wake up this morning and get ready to go without crazy pre-planning of having tons of meds with me, making sure that i feel well, having my husband there with an escape plan in case I don't feel well, etc, etc. 

Tonight, I'm hanging out with that group again for a dinner cooked by one of the husbands.  This situation is one in which it will be hard for me to seem "normal" since I'm on such a restricted diet that I can't eat much of anything right now.  My diet calls for nothing acidic, so I have to pass on a few of the items, and had to make a special call to someone that I haven't seen in a couple of months to explain.  I'm also the kind of person that hates to make people go out of the way for me, especially since I've become ill, so this call wasn't easy for me to make.  But of course, my friend was super-amazing about it. I'm really looking forward to spending more time with these ladies.

Also, in one of my more "normal" blunders, I happened to have grabbed the wrong checkbook today and paid for a massage with an account that has no money in it.  Luckily, I know the massage therapist well enough that I could call her and ask her to hold the check until tomorrow.  But...I have to make my hubby go out of his way to put money in that account, since the bank doesn't have a branch anywhere near our house. Whoops!  However...if that's the biggest issue in my day, I'm feelin' pretty good about it, though of course I feel bad that I'm putting the guy that takes care of me the most out of his way. 

Finally, I'm starting to look for work again.  Nothing full time yet, since I don't want to undo all of my hard work with too much stress too soon.  Something part time, and ideally something with flexible hours. I have a feeling that it will take a bit of time to find something like that.

Onward and upward!
-S

Random things...

I'm back.  Two days in a row is pretty significant for me these days.  My life is blissfully boring at the moment and I don't usually have much to talk about.

What triggered my need to blog for the day was I was just lamenting to my husband that I am so annoyed that I'm too darn tired to do much in a day. Not having all the pain is really amazing, but to me, it's not worth a lot if I don't have energy to do anything.  Since he has been a close, outside observer, it was easy for him to explain to me why it will come back quickly. I went from 2 months of being completely bedridden, to 5 months of DRAGGING myself through work and life, to about a year of being either in bed, lying on the couch, and going to appointments--not to mention all of the medications that knocked me down.  I guess I can see now why I can't just get up and go! Happily, this recount from an outsider's view made me realize how significant a little thing like the fact that I now sit or stand for the entire day really is. He's really quite an amazing guy.

Til we meet again,
-S

I think im going to be okay!

Knock on wood. :)  So here's where I stand: I finished the bladder instillations, I'm a couple of months into the Elmiron, and I've started a real workout plan. The last two weeks have been pretty good for me. If you've ever had a chronic condition, you're familiar with the pain scale. I had been living in the 5 to 8 range (0 is no pain, 10 is the worst imaginable). I now stay in the 2 to 4 range, with 3 and 4 being pain levels with which I can completely function. The downside is that I'm still super-tired, therefore forcing me to take on life at a cautious pace. However, I seem to have finally gained the ability to pace myself.

Since I'm on my phone where I can't easily see previous posts, not to mention that my memory is horrible (!), I can't remember if I mentioned these two developments: my MRI showed that I have a herniated disc between my 4th and 5th lumbar, and a nerve in my leg may be permanently damaged.  That said, I've had to be careful with working out. To make sure I'm improving my overall level of fitness, plus taking care of my back, I've been rotating yoga, strenghtening and cardio. My goal is to work out 6 days/week, but I'm starting with 3.

Also of note is that I'm aware of the precarious nature of my health. Unfortunately for me, it means that I can't yet let someone back into my life that has caused me a great deal of unnecessary stress over the past few months (see previous post for more detail). In my world, stress = pain.  I'm just not physically strong enough to confront it right now.

But for now, I focus on the positive.  Remember that song from grade school?

Accentuate the positive/ eliminate the negative/ latch on to the affirmative/ don't mess with Mr. In-between.

That's me!
-S

It's a two-post kinda day...

I've been meaning to share this link forever....please, please don't ever say to someone mockingly or tactlessly, "But you don't LOOK sick".  Those of us who are sick on the inside, but don't show it on the outside really don't like it.  It's like asking a pregnant lady if she's having twins because you think she looks bigger than she should.  Not cool.   However, I do appreciate the genuine compliments, so keep those coming. ;-)

http://www.butyoudontlooksick.com/

-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

Illness changes things...

Good afternoon!

Yup, haven't been on here much lately.  If you know me, it's because I am going through a rough spell with my health issues. 

I wanted to pop in here today because I'm dealing with some stress/drama with someone close to me in my life who just can't seem to understand that my illness changes things.  Even though I'm not working, I don't have much free time because I'm going through a series of treatments that leave me pretty incapacitated for at least three days out of the week. In general, I'm not the greatest about getting back to people, but as I've stated before, illness makes it worse. So, for those of you who have someone close to you who is dealing with illness, please, please, PLEASE give them the benefit of the doubt and do not take their lack of communication personally.

What I personally tell those close to me in my life is that I always appreciate email/phone calls/texts, etc. and I will do my best to get back to you right away, but it may be a few weeks. Sometimes a message slips through the cracks. What I should start telling people is that I've learned to put a mask on for the world so that even on the days I'm dragging myself places out of obligation, you probably can't tell that I'm hurting. Only a few people in my life will ever get to see behind the mask.

To summarize:  I'm only human.  A broken human who doesn't have control over her illness and pain.

Any thoughts and responses from the healthy side are welcomed with an open mind.
-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

Quickie update

Hey all-

I've left a lot hanging since my last post, and this one won't be too helpful. :) But, I want to mention that my Interstitial Cystitis (Commonly called Painful bladder syndrome) was formally re-diagnosed.  I've started weekly treatments called bladder instillations, which are even more painful and awkward than they sound.  29 hours after my first treatment and I still can't sit upright! But, they get better as they go and in about 6 weeks, I should notice significant results.

More later.
-S

Slacker!!!

Hello,

Growing up, I was always the kid who got ok grades along with notes to my parents that I wasn't living up to my potential. I had no study skills and no organizational skills, and I had no desire to acquire any.Well, after a difficult childhood, I turned 18 and cut loose for about a year and a half, and then became very serious about building a fabulous life for myself. I finally figured it out, started making good money, got married, and went back to school. I finished my associates degree with a 3.95 GPA and then graduated Magna Cum Laude with my bachelor degree last year.  Talk about extremes!

Anyway, I often talk about overdoing it on my "good" days. Today, I decided to revive my slacker-self and just be. And let me tell ya...it's long overdue. 

Tomorrow, I'll strive for the happy medium...maybe.
-S

Finally, some honesty!!

It's been awhile again.  First off, I just got back from an appointment with my new pain management doctor and it went well overall.  She was very honest in saying that there is nothing she can do for me, except to refill meds as needed.  That made me happy because the other place kept putting me through the nerve blocks.  Strangely, they do a full check-in, so I left with a hospital bracelet and allergy tag.

Secondly, the reason I'm ok with the pain clinic doc's information is that I've started physical therapy again and this PT is far more experienced and specialized in treating pelvic pain than the last place I attended. She was also able to nail down the fact that I am dealing with an inflamed bladder from Interstitial Cystitis (more on that another day). Also, these providers all work in the same health system and seem to work very well together.

Next week is my lynchpin appointment with the Uro/gyn, who will hopefully be able pinpoint the cause of this chronic pain, or at least give me some next steps. I need this one to go well or I might fall to pieces...again.

Also, the PT loaned me a TENS unit while she gets my insurance to cover my own. It has been somewhat helpful, and is most definitely preferred over percoset.

Lastly, I've been sleeping ok thanks to amitriptyline, though it forces me into about 10 hours of sleep and leaves me groggy in the mornings.   The bonus is that I haven't been waking up in as much pain.  Between that and the PT, I might be on the right track again.  But, I am not feeling so great today and had to give up my baseball ticket for tonight...yet again.

'Til next time,
-S

Whether we participate in the idea or not, money makes the world go 'round, plus the updates I've been putting off.

Ok, this post title may not seem connected to my blog, but it really is.  I'm going through one of those phases again where I'm feeling guilty for not bringing home the bacon.  In reality, I know that there's not much that I can do about it right now, but my brain keeps telling me that I should just force myself to find a job and try to suffer through it...even if I get fired in the first 2 weeks for missing 5 days of work because my chronic pain took over and I had to go home, or worse, stay in bed all day from the pain...at least they'd have to pay me for the time I did work, right?

Anyway, what brought this on was the fact that we've had a super expensive month, including a hail-damaged roof. So, it's been an expensive month, mostly because all of these unforseen things keep happening along with the forseen (is that a word without the "un"?). Aside from that, as  I've blogged before, my hubby drives 120 miles/day to work and we haven't been able to sell our house to move closer and save on gas funds because of this crazy economy where many are losing jobs and even their homes because they are in worse situations than we are. I know that our tight budget is the story of most people, so I'm preaching to the choir, but when it is paired up with health problems, and even worse, one half of a couple that is almost constantly in unrelenting pain, the stress and worry goes through the hail-damaged roof. (couldn't resist that one).

OK, now for a quick update/example of a poorly-run healthcare office.  My pain level spiked, I called my pain clinic, also mentioning that my last nerve block was no help, and aside from that left me with a numb upper-leg. They took 2 days to call me back, even though they have that crappy 24 hours for a call back policy.  I missed the callback as usual, took another day to get them back on the phone. Was told to make an appointment to see my Dr.  Called to make an appointment, they said it would be 2 weeks to get in.  I was angry.  By chance, an appointment opened up for the next morning (last Friday) with a Physician's Assistant, so I took it.  She focused only on the numb leg, drug-tested me, scolded me for taking more pain killers than prescribed (which I didn't, she was actually mis-informed), upped my number of percosets to 120 for the next month, told me that insurance probably won't approve  nerve blocks any longer because the last 2 didn't work (even though I maintain that the Dr. missed the last 2 times), had no other suggestions for me, and then ordered an MRI for my numb leg, telling me it would probably take 2 weeks to even get a call to SCHEDULE the MRI. I know, that was a run-on sentance, but I'm OK with that. She then told me to schedule a follow up after the MRI was done.  Here's where I admit that I cried through the second half of the appointment and my entire 35 minute drive home because a) I'm in pain and b) because I was casted aside with no plan. Note again that the leg numbness is not my complaint, just a symptom that I reported after my last nerve block.  I can't remember if I mentioned that I clearly remember a giant pain running down that part of my leg during my last nerve block, but that's exactly what happened.

My next steps were as follows: 

• I had my husband call the Dr's nurse to ask what the clinic's next steps are to deal with the pain...I signed a release for the clinic to talk to them anytime I want because frankly, I take it very personally when I'm not treated well by a healthcare professional and I tend to yell, whereas my husband's charming personality gets results.
• I obtained a referral for Physical Therapy with a highly-recommended PT from my new OB/GYN so that I can try again to improve my pain through non-surgical methods
• I also obtained a referral for a second opinion at the pain clinic in the same health system as the new OB/GYN
• My husband received a call from the clinic administrator instead of the nurse, and he made sure that they included my request to try cheaper alternatives, like a TENS unit, along with his request for a very specific short-term and long term plan for my care.

So, with all of that taking place, I did receive a call from the place I was referred for an MRI in only (insert sarcasm) a week's time, and guess what happened?  The place they wanted to send me, which from the business degree's that my hubby and I have, we figured out that they have a kickback deal for referrals, tells me that they are out-of-network from my insurance.  I promptly told the lady that I will not be setting foot (or lumbar) in her office, and she tried to tell me that I had to schedule with her.  Yeah, right. So, I called the pain clinic back to explain, and gave them the name of the hospital where all of my new doctors are, and asked for the order to be sent there.  Then, I received a call later that day from the pain clinic (which nearly gave me a heart attack, since I never receive same-day service from them), saying that I can call the hospital I provided to them to schedule the MRI, and she gave me that hospital's scheduling number.  Guess what happened when I called...seriously, guess....They had no record of the order being received!!!!!  So...as I'm standing in the grocery store on that Friday, on my way to my weekend vacation, I left a message for the general voicemail of the pain clinic, which promises to return my call on the next business day explaining that the order was not received, and provided the fax number where they can resend the order.  It is now Monday, and guess what...yes, you guessed it, the pain clinic never called me back, and I didn't not hear from the hospital, which is fabulous at handling business, to schedule the MRI.

So to summarize, as I did on my Facebook account the other day.  Can we puh-leeze fix the healthcare system?  Pretty please? 

Anyway, all that said, I've done no proofreading, so if anything is unclear...I'll probably fix it another day. Probably.
-S

A tribute to my husband

Hi,

I'm here.  People that are close to me in my life know that when they don't hear from me in awhile, it means that I'm not feeling well.  That's exactly why I haven't blogged in a bit.  Anyway, I don't have the time to do a full update right now, but I want to take a minute to share something that's been rolling around in my head for awhile now...

Not long ago, my Mother-in-law (Hi, Pat!), forwarded an email in which the moral of the story was, "God answers our prayers in his time, not ours".  I sat and pondered what that meant in my life for a bit and then something hit me like a lightning bolt...One of my prayers was answered before I even knew that I needed to pray for it.  Specifically, God brought my husband into my life when I was just 18 years old and on my own for the first time.   We started dating when I was 19 and was truly on my own, with no place to live, no job, and very little money in savings--I seriously wasn't much of a catch at this point. Yet, we fell in love and married 5 years later when I was 24.  My first sign of serious trouble with my health came less than a year later when I was 25.  If I had not had my husband in my life (along with his family) to support, comfort and help me navigate through this mess, who knows what would have happened to me?

Just something to think about.
Love ya, babe!
-S

From somewhere in Iowa

Happy Mother's Day to all the Mothers out there! In a surprising turn of events, my hubby and I are on the road on the way to Manila, IA where my Stepdad, who many of you simply know as "my Dad" since he raised me from the age of about 13, grew up.  We are going to make it to my Grandmother's funeral after all. I also get to see my Mom on Mother's day, which was not expected since she lives in AZ during the colder months.

Yesterday started badly with my pain. I was desperate to feel better so I took a pain med that I hadn't taken in awhile and it absolutely floored me-so much that I actually slept in a chair for a couple hours while 4 of my in-laws were dancing away to the game "Just Dance 2" luckily, I woke up feeling pretty good and was able to show off some of my sweet dance moves...and also the not-so-sweet ones. :)  the exercise must have been just what I needed because here we are, on the road just over 1/2 way to our destination.

Another note-preparations for me to be in the car for a long time are rediculous.  Pillows, blankets, snacks for the meds, ginger ale, comfy clothes in layers, a train case full of meds, my medical id bracelet, my med id card for my bleeding disorder, and the garmin in case we need to find an emergency room. Fortunately, warm weather does me good and it will be 85 degrees tomorrow.

Ok, back to the road trip now. I'm sure the hubby would like some attention on this 7 hour drive.

-S

Not good

Well, I'm not too surprised that things went downhill again.  Being sick along with stress and my Fibro flare caused me to miss my normal strecthing and light exercise routine for too many days. Now I'm dealing with a new round of pelvic floor muscle spasms, which is the worst of the worst of the pain that I suffer from (info is in a previous post somewhere). This one hits a 9 on the pain scale and takes a few days to calm down through specific exercises.

Aside from this is the fact that my Step-Grandmother passed away this week and I won't be able to travel the 8 hours to make the funeral.  She was a fantastic woman who instantly accepted me and my sisters into her family as one of her own when I was about 14.  I love you, Grandma Reding and I hope that you are smiling down on us with Grandpa.

-S

The nightstand of a sick woman

I'm always trying to find ways to illustrate my life, without feeling like I'm sharing too much of myself,  to help others understand what life with chronic pain is like.  I woke up this morning feeling very tired, yet better than yesterday.  I took one look at my nightstand and realized that the picture shares 1,000 words. Here's a rundown...

• Ginger Ale-helps with the nausea I constantly fight (3 cans from the last 24 hours). The wrappers are from the bars that I eat at night or in the early morning to keep pain meds from hurting my stomach.
• Prescription bottles-percoset for pain, gabapentin for nerve pain. Tizanadine to help me sleep. Wrapper from an Imitrex that I had to take in the middle of the night when a migraine set in and I had to fumble around to find it.
• Other medications-Mederma to help reduce painful surgical scars, ibuprofen (that I'm not really supposed to be taking) for sinus pain from my cold, Aspercreme to help with some of the muscle pain.
• Books-I've been reading into the late hours of the night.
• The box in the background-this is where I keep all of my meds that I'm not constantly using.
• The bowl with the scarf in it- I wore the scarf when I was out shopping last week. When I got home, I felt awful and ripped it off while I laid down to rest.
• "The normal stuff"-eye makeup remover, eye cream, moisturizer, water. Notice that this stuff takes up little space comparatively.

Otherwise, my plan is to take it easy today.

-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 

When will I learn?

Good morning,

By chance, I came across this article on Savella, the drug I recently had to stop taking because of extreme dizziness.  To my horror, there are serious concerns about this drug that the FDA approved to treat Fibromyalgia.  Even though the prescribing doctor gave me a prescription to continue taking a low dose, I opted not to start taking it because my new Ob/gyn provided a list of other doctors for me to see that would re-evaluate my entire treatment plan. Maybe this event will finally encourage me to conduct thorough research before popping another new pill.

http://www.bloomberg.com/apps/news?pid=newsarchive&sid=a0lZW4ldgHns#share

-S

I'm not sure this week could be any worse!

Well hello again,

Unfortunately, each day keeps getting worse for me.  I've been fighting a cold, my feet, legs and wrists are still killing me, but once again, I missed out on fabulous plans because of my health.

Yesterday was supposed to be a fun day where my hubby took off work and we went to a baseball game with our friends and their 3 little boys, the youngest of which is our Godson.  I woke up that morning still feeling my cold, still feeling the pain from Fibromyalgia, especially in my feet, and on top of it, a migraine was coming on. So, I took migraine meds and plopped down on the couch.  About 30 minutes after we were supposed to leave, I decided that there was no way that I could go to the game.  So, I sent my hubby on his way.  About 30 minutes after that, I started throwing up.  Then about 15 minutes later, I threw up again...and again...and again...and again.  I still haven't figured out why this happened.  It could be part of my cold, part of the migraine, a result of everything in my system just being off, or maybe some kind of flu bug.  Either way...I'm glad that part is over for now. 

Tomorrow is reserved for rest, rest, and more rest, no matter how I feel.  Saturday is my day to attend a bachelorette party and I really feel the need to have a night out where I don't have to worry about my health for a few hours. However, after forcing my feet into 4" heels last weekend, I think I'm going to go the sensible Birkenstock route for this party, especially considering that my car is currently sitting about 10 blocks away from the final destination of the party at my brother-in-law's place (long story...related to my hubby's car issues from last week), and I'll have to walk there to retrieve it after the party.

Otherwise, I'm still attempting to catch up on many missed phone calls since Saturday.  I listened to 9 voicemails in total today and haven't made a single call yet.  If anyone reading this needs information from me, the best bet is probably a short email or text--I'll get back to you as soon as I can. 

Sweet dreams everyone--off to bed for me.

-S

Ok, then...

Hi again,

Well, I was going to write a quick post about how much my feet, legs and wrists feel today (Fibromyalgia pain, complicated by crappy weather) and click "post", but something funnier happened:

The internet is a strange place.  I'm really not that naive, but I'm still constantly surprised by the cruel, sick, strange and puzzling things I see sometimes.  Tonight, my stats page told me something interesting...someone actually found my blog by searching for the following on google "locker room shower girls awkward swimsuit".   My bet is that person was SORELY disappointed to find my blog post about a broken down thirtysomething going to the Y to walk in a warm water channel!!!!

Anyway, back to my original story.  Stress, stress, stress...I've had a cold for a week, the hubby had an unexpected car breakdown, we had an out of town wedding, insomnia took over again, and then Easter Suday was kind of a wash for me because I was so out of whack.  I had to leave the sunrise church service halfway through, then ended up sleeping for most of the day.  Monday was a day of complete rest, and today was a day of complete pain.  My feet seriously feel like they are broken...no exaggeration. I've broken bones, and my feet feel like they are broken. 

So now, I am going to give in and take a sleeping pill to make sure that I get a good night's sleep.
Good night!
-S

Article from yesterday's post

http://www.possibilism.org/bring-nature-home-for-pain-relief/


OK...starting to figure out blogger for my Android.

-S

I hope this works!

Greetings!

I downloaded the Blogger app for my phone in hopes that I can blog on-the-go.  Insomnia gives me a lot of free time many nights, and I've recently been filling that time by reading articles on paint management, diet, etc.  This one struck me because I love nature, yet my issues (and Wisconsin weather!) keep me from getting outside as much as I would like.

More to come on my get-back-to-nature plan to fix myself up. It's in the works.

-S

Good yesterday/rough today

Well, one out of two isn't bad for me. :) 

Yesterday was my appointment with my new Ob/gyn.  Even better than the fact that the appointment went well was the fact that I felt well on top of it.  Here's the scoop:

I arrived later than I was supposed to because I didn't leave on time, hit construction (the place is about an hour from my house) and couldn't find the clinic.  Then, I couldn't immediately find my insurance card in my wallet. Turns out, there's a slot in it that I didn't even know was there that I must have absentmindedly stuck the card in last time I had it out.  Once they called me back, there was the horrifying experience on the scale, but after that, the appointment went very well.

First came the daunting task of entering my information into the computer. We started from scratch since this was my first time visiting an office in that healthcare system (ProHealth). That task took about 45 minutes. Part of it was that I have so many drug allergies, past procedures, diagnosed issues, and current symptoms, but most of it was that this poor woman was just starting out on her job, and was also not used to either a computer or the computer system.  Worse, was that she is not familiar with either medical terminology or the spelling of many drugs, so it was pretty painful for both of us until a seasoned pro came in and took over. I'd estimate that that the first woman took 80% of the time to enter 25% of the information, so I was beyond grateful to get the show on the road. 

Next, I met the doctor for the first time. She did a wonderful job taking my history, asking questions, listening to my concerns, and allowing me to ask all of my questions. Even better was that she was able to hook me up with recommendations for many of the specialists that I need to replace, and was forthright in letting me know their strengths, along with any concerns I may have.  Since I have several overlapping issues, specifically the chronic pelvic pain, Endometriosis, and Interstitial Cystitis (or not..see previous posts), there are several doctors, including the Ob/Gyn who could both treat and perform surgery.  She was very honest in telling me that she was not the strongest of the surgeons due to the fact that she is a generalist, and also gave me recommendations as to who would be the best captain of the ship...the ship being me, of course.

I walked away with a list of the following specialists:

• Urogynocologist (A urologist and gynocologist, which is hard to find)
• Hematologist
• Ferility doctor for the futureInternal Medicine
• Neurologist
• Pain Management

Sadly, this isn't even a complete list of the docs I still need to find, but it's a fantastic start.  Looks like I'll be spending a lot of time at the hospital again to get in for all of these appointments.

As for today, I was supposed to go back for a cholesterol test, but I had to cancel because I caught my husband's cold, and possibly the flu bug that was going around the Sunday School Class that we teach.  Meaning...back to bed for me.

Many more doctor appointment updates to come...
-S

Research

Hi.

Today is a pretty rough day for me.  Pelvic pain, Fibro pain and Endometriosis are all competing for my attention. Endometriosis is winning with Fibro pain, specifically in the neck and upper back a close second.

My recent promise to myself was that I would read anything about Fibromyalgia that I could get my hands on.  Now that I've started my research, I've decided to modify this promise.  The more I read, especially testimonials, the more I really, truly realize that there are many things that I am never going to be able to do again.  I think the one that hits me hardest is playing in a soccer league  I played soccer for 15 years, beginning when I was just 4 years old in Appleton, WI.  When my family moved in third grade, the  new friends I made that year were all from my soccer team.  When I moved again my sophomore year of high school, I had a hard time making friends until soccer tryouts that spring, where I became a starter on the Varsity team and made lifelong friends. I was all set to play college soccer, but ended up withdrawing two days before the first practice (I had worked or babysat almost every single non-soccer night since I was 14 and decided that I needed some free time), though I still played in recreational indoor leagues.  In the couple of years between not playing and the beginning of my health issues, I always thought I would play again. Now I'm realizing that my body just can't take the strain. 

So what's the solution?  I'm not really sure yet, but for the moment, I'm letting myself be sad about this for a few days, but then I'll figure out what activities will still suit me (Curling? Table tennis?) and go from there.

Another thing I meant to mention a few posts back was that I'm realizing that I also need to give up attending Aqua Zumba as frequently as I have, if not altogether. Water walking against a current has been really helpful, but dancing in the water just causes more pain than good.  Back to the boring!

And...back to my weekend. :) 
-S

Ranting and reading

Happy Thursday!

Unfortunately, I was house-bound today becasue I'm still dizzy from the Savella (my new Fibro med that I mentioned in yesterday's post).  And...to rant a little about the healthcare system again...a well-run healthcare clinic is hard to find.  I sorely miss my year and a half with the University of Wisconsin Healthcare system.  I swear that I have never waited more than an hour from a call back from a Doctor's office, and much of the time, it is the doctor that called me back personally.  If not the doctor, I got to speak to a well-informed proxy who takes care of all of my issues in one return phone call.  Back to the rant...I had to call the pain clinic this morning to let them know that I'm still dizzy and unable to walk long distances (as in, further than down the hallway), or safely drive, and that I need to know what I should do next. The thing is, they have a 24-hour callback policy, but are not available Mondays.  Messages must be left by 4pm, so anything that happens after then can't be called in until 8am the following morning. Prescription refill requests are only honored Tuesday-Thursday, and there is a 7 business-day lead time policy that the patient must honor, so Thursdays are crammed with patients trying to get refill requests in on time.  That said, I called immediately after waking up at 11am this morning (I was up until 6am this morning, despite doing everything I could think of to fall asleep) and did not get a call back.  So, by the time I get a call back, I will have missed 4 doses of this medication. Since the prescription has to start at a low dose and step up every couple of days, I'll probably have to start over if the doctor wants me to continue.  How frustrating.  Like having Fibromyalgia (along with my chronic pain and other issues), isn't bad enough!

Otherwise, I've been diving back into reading again lately.  I had a really rough childhood and books were always my escape from reality when I wasn't playing soccer or hanging out with friends.  When all of these health issues cropped up, I wasn't able to read because the pain was too much of a distraction.  Now that some of the pain is under control, I am devouring every book that I've always meant to read but haven't.  Off the top of my head, in the last couple of months I've read:

• Tuesday's with Morrie by Mitch Albom (I plan to blog about this at some point soon)
• Memoirs of a Geisha
• The first 7 Sookie Stackhouse Novels by Charlaine Harris (The True Blood novels)
• The Hunger Games by Suzanne Collins
• The Twilight Series (Yes, I admit it)
• Game of Thrones by George R.R. Martin

Let me know if there is something that you think I would like.  Off to bed with me...I really want to read a bit and then will hopefully get a good night's sleep!
-S