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

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

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

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

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

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

Moving in the right direction

Greetings!

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

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

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

For now...off to bed. 
Peace out,
-S

Waiting to take my 10pm medication

Hi,

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

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

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

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

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

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

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

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

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