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

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

Lost ideas.....

It's been way too long. I hope you are all still with me. :) I've had many ideas that I wanted to blog about over the last few weeks, but I haven't made time to sit down and put any of them into a post. Now that I'm here, I'm going to give a brief update of my last month or so, and then resolve to pop on more often with shorter posts so that I can get my thoughts out. Well...I had an eventful March. I had another nerve block that did not go well at all. Everything was status quo, with the exception that I was given a drug (to help knock me out) prior to being taken back for the procdure. If you want to read about the procedure, you can follow this link. Anyway, as the main needle went in with the long acting steroid, I felt a sharp, sharp pain radiate all the way from my back to my ankle and I remember yelling out on the table. The doctor asked me what hurt, I described the pain, and he said "Very good." Whatever THAT means! After that, I don't remember much, so I'm skipping ahead...We hit up a drive through on the way home and by noon, I was resting on the couch at home. Not much later, I started feeling, very, very nauseated, and by 2pm, I lost my lunch. For the next couple of hours, my stomach made sure it emptied itself completely. By 4:30, I thought I would be ok, so I ate a bowl of wheat noodles. By 5:30...I regretted it. The night was very long, mostly because I couldn't hold down water, or any painkillers. My hubby took me to urgent care at noon the next day and we had to wait until almost 4pm to actually start treatment. It had been 36 hours (counting the time I couldn't eat or drink before the surgery) since I had held any water down. Two bags of saline, two IV doses of anti-nausea meds, an IV dose of benadryl, and a prescription for liquid percoset later, I was sure that I was going to live. The diagnosis was an allergic reaction, though long story short...we're still not totally sure what drug caused the reaction. Then, just to kick me when I'm down...the nerve block didn't work at all. Since then, I've been unbelievably tired, as well as fighting both my pelvic pain and my Fibromyalgia pain. Since the source of some of my pain is not diagnosed, beyond a general statement that there are multiple sources, I'm heading to a new Ob/Gyn next week. Wish me luck! -S