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

Oh, the irony...

Hi,

It's 12:43 am right now. I'm always tired lately, yet I can't fall asleep at night. When I do, it's never for more than 2-3 hours at a time. Then I can't seem to nap during the day to make up for it. Lather, rinse, repeat. Ugh.

Well, I had planned to create a nice blog entry summarizing my 2009 and then my 2010 for myself and for newer readers, but that hasn't happened yet. Since this is not the time of night to try and recount events of the last 2 years, I'm just going to list a few updates since it's been awhile since I've posted.

The first thing on my mind is that I haven't seen the 54 year-old woman that I met my first day at the Y since the week that I met her. I'm really concerned that something happened. Moreover, I'm becoming concerned that she was not real. Not really, but it is strange that I haven't seen her at all.

Next is that I truly am doing far better than my complete health collapse of 2009, but it will still be a very, very long time before I may even have a chance of working full time again. I just had an appointment today and I was talking to my doctor about disability. We basically agreed that this is not quite yet the time to pursue it for two reasons: I am still improving (although slowly) and also that it is extremely difficult to be granted disability at my young age, so all bases have to be covered. I never, ever, EVER thought that this was going to be my path, but I'll talk about that more another day. This paragraph deserves to be expanded into its own post, because this experience has not just changed my outlook on life, but it has profoundly changed who I am as a person.

The Y has been great for me--I've met a few people closer to my age who are in similar health struggles and can relate to me. Other than that, Aqua Zumba is just plain fun. Unfortunately, I've had to take a week off due to a flare up of pretty much all of my problems and I can't wait to get back into the water. Otherwise, I just found a great pair of running shoes that I plan to use to slowly walk on the treadmill. :)

I've also been fighting against three medications that are generally responsible for significant weight gain. It's a miracle that I've been able to maintain my current weight for the last year, but I need to lose a bit to be able to better fight my fibromyalgia. After talking to my pain doctor today, I get to drastically reduce the dosage of my Gabapentin, so I'm excited to see if I can finally start losing some weight again.

As far as small victories are concerned, I'm finding more and more each week. I can unload the dishwasher everyday without wearing myself down or causing additional pain. When I take a pain pill, it actually takes the pain to a very low level, instead of just taking the edge off or doing nothing. I can finally sit down and read a book without being distracted by pain. I can focus on more complex news articles and books because my brain feels less "foggy". I can finally focus on the "I cans" instead of the "I can'ts".

Finally, I want to thank each and every person who has sent me a news article, webpage, contact, book title, suggestion, opinion, shoulder to cry on/vent at, etc. since I've opened up about my chronic pain issues. I feel so blessed to know that there are so many people out there that think of me and take the time to share something that you think may help. I take each to heart and consider it in my overall care. I also feel blessed to know that so many people have reached out to thank me for sharing this time of my life and have passed along my blog address to someone who may find some benefit. So, for anyone reading this blog who does not know me, I'd love to hear from you!

Cheers!
-S

New year, new outlook

Happy 2011, everyone!

I am not a resolution person, but I'm really happy that we're in a new year, because I feel like I can box up the pain from last year and leave it behind. Of course, there's new pain for this year, but I'm trying to have a fresh outlook with it. Unfortunately, I'm facing a small setback in that I have to find a new primary care doctor and all new specialists because of an insurance carrier change. Luckily, I get to keep my pain clinic doctor without interruption.

Otherwise, I had big plans for a reflections of 2009 post, but it will have to wait for another time. I'm finally less fatigued from my meds, but I'm getting over a cold and am just generally behind on everything in life, especially in returning emails/messages, etc. So, if you sent me something in the last few months and never received a response, please accept my apology and know that I appreciate your reaching out to me.

Many blessings to you and yours in 2011!
-S

Sleeping Beauty/Zombieland

Hey everyone,

I hope you all had a nice Thanksgiving. I have lots of updates to share.

First, I had my pain clinic follow up a couple of weeks ago. Thankfully, I've realized that my memory has gone down the tubes so I now carry around a journal to make sure that I document all of my appointments, as well as how I feel every day. Anyway, here's what I wrote in my journal from that visit:

Current symptoms:

• All over pain, primarily in my wrists, ankles, fingers, lower back, feet, clavicles, left shoulder, and sometimes neck
• Trouble sleeping (2-4 hours at a time max)
• Increased migraines due to lack of sleep
• extreme fatigue 3-4 days per week where I can't find the energy to do ANYTHING
• Bladder pain resurfacing

New info for Doctor:

• Joined the Y--started water walking and Aqua Zumba classes
• Found a massage therapist that specializes in fibro pain

Questions:

• What are the differences between Cymbalta and Lyrica for Fibromyalgia pain?
• Can I discontinue Gabapentin?
• Tizanadine is not effective for sleeping or pain any longer...what else can be prescribed to help me sleep/reduce stress and fatigue?
• Can I get a prescription for the Y? (so that my Health Savings Account can foot the bill)

The results:

• I was referred to a Urologist/Gynecologist, which are extremely rare and hard to get into, though I was able to get a January 27th appointment
• We decided that Cymbalta was the better of the two prescriptions for me to try for Fibromyalgia
• I have a year-long prescription for the Y. (YAY!!!!!!!!)
• I received another Percoset refill...90 pills for 30 days
• I received a prescription for Amatryptaline to help me sleep
• A DVD was on its way to me in the mail so that I could check out the recommended next step of spinal stimulation (Implantable stuff...yikes, yikes, YIKES!)

So, onto my blog title, which usually takes me forever to get to in my posts. I started Cymbalta and I have been doing almost nothing but sleeping since the day I started taking it. Every time I start getting used to it, I have to increase the dose!!!! The Amitryptaline made my sleepiness even worse, so I've stopped taking that for the moment. The kicker? I STILL can't fall asleep at night because my pelvic pain sets in during the evening and then I can't relax enough to catch my Z's until late into the night. So, while my husband somehow thinks I'm cute and Sleeping Beauty-like, the reality is that I'm a drooling, make-up free, smelly, tangled hair mess just about all of the time. Fortunately, I'm at my max dose now and I've been able to stay awake for an entire day and evening, though I haven't left the house yet because I feel like driving would be unsafe. I can't wait until next week to see if I'm feeling any better.

Until next time,

-S

Why, oh Y!

Disclaimer: I really do love going to the Y.

So, I was super-excited to go to the Aqua Zumba class this morning. This class started at 9:20 as opposed to the 12:10 class that I took on Wednesday. I rushed to get there by 9am this morning so that I could warm up in the water channel before class started. I got ready in the locker room and then walked into the pool area at about 9:10. To my dismay, I walked directly into the "Twinges in the Hinges" class that I was warned not to take. There was no way around talking to the dozen 70+ people in the area, who immediately started the chorus of, "you're way too young for this", "you're new here, aren't you?", "Oh! Someone new!", "Look how young she is!". So instead of being shy, my extroverted self came out and I said that my doctor sent me here, then proclaimed that I'm actually 73 years old as I started walking through the channel. I quickly clarified that I'm actually 32 and that I'm known for having a smart mouth. On lap two (they were all stopped and clinging to the wall for some legwork) I could literally here the game of telephone of "her doctor sent her"..."she said she's 73"..."she's new here"..."she has fibromyalgia"...and gossip as if I wasn't there. Glad that I could give them all something to talk about! In the end, many women were very nice and I was introduced to over half of them. And yes, they confirmed that the youngest person there is in their early 70's.

So, after that class ended, they all cleared out and Aqua Zumba was about to start. I looked around and once again, it was a much older crowd, but this crowd was not friendly to me at all. Not that they were unfriendly...just not friendly. I tried to make small talk a few times and it just wasn't happening. But, the workout is great and I'm not really concerned whether the people around me want to talk or not. Most of them gave up about halfway through anyway. As that group left all at once for the locker rooms, I decided to stay in the water for a bit so that I could avoid further gossip. Moral of the story??? Don't be early for Aqua Zumba on Fridays, and continue to go mid-day like I have been the rest of the week. I can't wait to be feeling well enough to use the equipment that people my age use! Also...these men and women in their 70's were having a great time, so it's a great glimpse into the future.

On another note--I've made it a day and a half without getting another migraine, and I actually fell asleep around 11:30 last night and didn't wake up until 5:30. A new record for me!!!!

Have a great weekend, everyone.

-S

It has a name...well, 2 names.

Hi,

As I often do, I left out a key detail in my last post. I was officially diagnosed with fibromyalgia-slash-myofacial pain syndrome. I'm kind of annoyed that the terms are being used interchangeably, because I feel like it would be nice to just have one diagnosis. Mostly though, it's because I would like to add only one, not two more things to my giant list of things that are wrong with me. Anyway, my primary care physician sent me the letter last week, stating she recommends one of two medications, but wants the pain clinic to treat it. But...she didn't immediately send a referral to the pain clinic. So, I got caught in the middle, making several calls and waiting a full week for action...which...was that I have to wait for an open appointment at the pain clinic. So now I have to wait until the 22nd to be seen and it's killing me because I haven't been able to sleep from the pain, which has set off a chain reaction of headaches, a horrific nosebleed, a general zombie-like state, neck and shoulder pain from being scrunched up with headaches, stress, and absolute crankiness.

Back to the Y now...

Day two was yesterday. It should have been the day before, but a migraine took that option out of the equation. Not surprisingly, I forgot my shower shoes AGAIN! yuck. Anyway, my new fibro friend pulled into the lot at the exact moment I did, which was exciting because we both knew that the time would fly by faster if we were chatting as we were water walking. We got to the pool and stepped into the current channel and quickly realized that we were going to have to walk with the current that day because the thing was cranked almost to the max. As we started walking, a woman with a "Zumba" shirt walked to the edge of the pool and asked if we would consider joining her Aqua Zumba class that was about to start because she only had 2 people and she needed 3 to do the class. So...we begrudgingly decided to check it out. Who knew that it would be so much fun! I was so fearful because I am sooooooo uncoordinated, but the great thing is that no one can see what you are doing underwater. :) I'll be back again on Friday for the earlier class.

Well, time to sign off for today. I've managed to destroy my hair in just two days in the pool, so I'm off for a haircut and a search for some kind of miracle shampoo.

Please send me your prayers and positive energy so that I may remember to bring shower shoes tomorrow.
-S