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

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

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

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

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

Insomnia...

Hello,

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

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

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

CALL 1-800-XXX-XXXX

MILD VON

WILLEBRAND'S.

ALLERGIC CIPRO,

AMOXICILLIN,

SULFA. OTHERS.

(MEMBERSHIP # HERE)

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

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

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

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

-S