Fibromyalgia & Medication

I'm really frustrated & overwhelmed by the lack of good medication out there for Fibromyalgia.

I've been on Elavil {also known as Amitriptyline} so far for the entirety of my 5 plus years will this illness. My original doctor prescribed it to me in a low-dose since in the lower dosage, anti-depressant medication has proven to be effective with relieving pain and helping with sleep.

I'd increased from 5 mg to 10 mg a little over time, and then the next dose up was 25 mg but we cut it in half initially. Eventually I went up to 25 mg but it made me a little drowsier than I liked. {I'm pretty sensitive to drowsiness side effects...and medications in general.} I fought through that for a bit and found it seemed to help.

For at least a year or so I went on like that, but then started to second-guess its effectiveness. I wasn't convinced it was working at all. So I thought I'd try going off of it and just working on lifestyle changes instead.

That failed.

I couldn't sleep at all without that medication. Lack of sleep flares up the pain as well so I was absolutely miserable.

Then out came Lyrica and after a time on the market, my rheumatologist thought it best to put me on it. {This was combined with the Elavil.} I tried Lyrica for a short time and had an awful experience with it, in part because my drowsiness became soooo bad, I could hardly function. We decided to go back to just the Elavil. I left that rheumatologist and continued working with just my doctor instead.

Ever since then, I've continued with just using a half pill of the 25mg of Elavil. I sleep okay. My pain levels are relatively okay. That dosage doesn't make me drowsy anymore.

But I've been really frustrated by the side effects, and my increasing sensitivity to the sun is driving me absolutely bonkers.

Thursday morning I had my annual physical with my doctor. It was wonderful. I could rave forever about my amazing doctor and how thankful I am that she's a Christian... but I'll spare you. ;) Needless to say, we talked at length in June when I was there about medications, I did a lot of research, heard from others some good suggestions, did lots more research, and talked in even more length this visit with my doc about medication options.

The long and short of it is that I'm going to stay on Elavil. *sigh*

I've generally made my peace with it, except the sun sensitivity thing really bothers me. But the difficulty is that most of the Fibromyalgia specific meds out there are not good for pregnancy, if I were to get pregnant I'd need to immediately go back off of them. Since we're kinda trying to get pregnant [er, at least not preventing], changing at this time doesn't make a lot of sense. And some of the other meds that could be safe for pregnancy, I'm not really sure I'd want to do that anyway.

It's been determined that staying on this medication is the best thing for me. And the good outweighs the bad.

Another benefit of staying on Elavil is that it means I don't have to adjust any of my medications. Safe. Stable. Secure. No changes.

Ahhhh. Sometimes dealing with an illness like this we just need some things in our lives to remain stable. Stuff like medications, doctors, etc.

Despite my frustration with this current medication, adjusting to a new one also brings along other fears and concerns that I'm not sure I feel like dealing with right now. So alas, I play it safe and keep on keeping on.

For now.

Chiropractor Update

My chiropractor visit Saturday was amazzzzzing!!!!


It's been too many months since my last visit. It's still hard for me to figure out why I don't make myself get up there more often. It's only 30 minutes out of the way, but in rush hour traffic it's worse. I find all kinds of excuses and deal with the fatigue, but ultimately it helps so much!

Dr. D. is great and knows me really well. You see, tomorrow {Wednesday} it's been 5 years since my first Fibromyalgia symptoms appeared and I first started going to him for treatment.

5. years. Wow.

I tried multiple other chiropractors to see what else might work over the years, since I was totally new to chiropractic care. I always ended up back with Dr. D. He's a solid Christian man, I trust him completely, Tim has come with me to several appointments and feels at ease with him too, and I feel so much better every time I go there.

His office used to be 5 minutes from work so in my first year or so, I went pretty often. But I got burnt out on it, and the visits are now usually every 2-3 months and sometimes more. I have another appointment with him in about two weeks and that makes me happy. :)

Friday night and Saturday morning I was feeling really, really, really burnt out and overwhelmed, emotional, and vulnerable. I prayed that God would help me relax at this appointment so that I'd feel refreshed and come away without so much stress knocking me out of whack.

And wow, God totally provided!

Now, I'm usually a pretty straight-forward person, but occasionally I still keep quiet out of fear, reality checks, or insecurities that creep in. Saturday I finally just let a few things out that have been bothering me as he was treating me. And I took a huge step and decided to talk to him about nutrition & workouts.

I've known that he's a licensed clinical nutritionist, but it takes me a long time and a lot of built-up trust to really dive into talking about the nitty-gritty stuff like that with people. [I'm uber sensitive when it comes to diet & exercise stuff... long story, coming soon, I promise.] And I knew asking him about it would mean full-speed ahead.

Indeed, that's what it's looking like it might be.

There's so much I'm still processing, still discussion points to cover with Tim, and still some time to think it all over. I need to be able to do all of that prior to posting more about it here. Please just pray for me, that God will give us wisdom and discernment. It's a really, really big deal for me... and quite frankly, I'm scared to pieces but also absolutely ready!

Also, Dr. D. gave me a much-appreciated compliment - he can tell I'm doing way better than I used to be, even though I can also tell that I'm not doing as well as I was 6-9 months ago.

That's SUCH great news!! I've been beating myself up so much over the past couple of months since I fell off the bandwagon so hard.

Today I'm just trying to take it all in stride and give myself a bit of grace as I strive to seek after Christ and honor him with my body. It won't happen overnight, it's been a long time in the making, I'm exhausted and burnt out, hoping for the best, and hopefully am on the long journey to losing weight and being healthier.


We'll see. Don't hold your breath. I've been known to screw it up. A lot.

Doctor Visit

I've been procrastinating for weeks about going in to see my doctor about a whole host of issues I've been having. So finally I called in last Monday, and they'd had a cancellation and could get me in at 9 am last Tuesday.

I was so freaked out about my list of stuff to talk to her about, that I had to take my anti-anxiety pill. But I don't know why I ever stress or get anxious about going to the doctor, because my doc is fabulous!

She helped talk me through so many things, and I am so thankful! I had some testing done and surprisingly I got the results back the very next morning! It's a huge relief to know that everything is normal. My glucose, cholesterol, thyroid, liver & kidney functions, blood cell counts, etc, are all in the normal range. However, that does mean I have some other things to work on and do as a result. I can't just chalk anything up to insulin or thyroid issues like we were beginning to wonder if I'd developed. Now the hard work begins.

It was a very helpful visit for all the concerns/issues I had. I think one problem I have is that with the Fibromyalgia, it seems like I'm always waiting for the next ball to drop. Like I know something else will hit me eventually, because that tends to happen with most Fibro patients. Hopefully nothing else will hit, but we'll see! For now, I'm just glad all is well!!

November... Really? - Random Thoughts

I can't believe it's already November. That just seems impossible. But whatever, let's roll with the punches. Halloween is over, Thanksgiving is coming, and Christmas is right around the corner. The air is crisp and cool, the breeze calming, and we even had our windows open during the day this weekend! I love this weather. 50s is uber terrific in my book. I'm excited for this season!.... Okay, I'm working on it. I'm a little dreading the impending winter, but I'm trying not to let it get me down!

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I am very, very, very sad yet another coworker friend of mine is moving away. She's quickly become one of my nearest and dearest friends. I'm in complete denial and refusing to let her go.

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I found out a couple weeks ago that my nutritionist left the fitness center I go to. I had no idea. She didn't tell me. I was really, really bummed for several days after I found out. I was hurt, offended, and confused. A 'soulmate' find of sorts when it comes to the nutrition world. She's even amazing at counseling and consoling me. We are like kindred spirits in a way. Really, I was devastated. Felt like I'd been punched in the stomach.

Then we chatted on Facebook a few days later, and she said some things that really made sense. I'm happy for her, just sad for me, ya know? {Same thing with the above mentioned friend.}

Somehow I have to find my own way now, and learn from everything she taught me. E-mail and Facebook just isn't the same, even though I am thankful I have ways to still stay in touch with her. Bless her heart, I'm so glad she'll still answer my nutrition/freaking-out-moment questions!

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On a similar note, I have some tough decisions to make soon regarding all the health-related, fitness and nutrition stuff. You guys are so great about praying for me, would you pray about this for me too? I am really conflicted and need some clear direction from the Lord to know what to do. Thanks, you guys are all super duper!! 

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Hubster and I had a delightfully wonderful and relaxing weekend. We hung out a lot, got stuff done around the house, went out on a date, and celebrated Halloween the way he likes to. By pretending it doesn't really exist and escaping the house so he doesn't have to deal with the whole trick-or-treating thing.


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I went shopping on Saturday. It's amazingly theraputic. Ran myself straight into an outdoor shopping center's Halloween fest. Soooo crowded! Contests, each store passing out candy, face painting, pumpkin carving, oodles of costumes on people and their dogs {that is so wrong but so cute}. In the midst of it all was a farmer's market where I got some delightful goodies including some apple cider donuts I shared with my coworkers today.

Got some new hand soap for our bathroom from Bath & Body Works {mmmm love their cucumber melon foaming hand soap, it's the bomb diggity}. Got some fun stuff at L. L. Bean including a new shirt for hubster {he wore it on our date and he looks super snazzy in it}, stocked up on my all-time favorite chapstick, got a new water bottle that I hate {but thought I'd love}, and a gift for my mom.

My mom's 60th birthday is coming up soon and we're traveling back to my hometown to throw her a party this next weekend {but it's not a surprise like my dad's was so I'll stay a little more sane in the planning}. I can't believe my parents turn 60 just a month apart, they could have planned it better, lol! My stepdad turned 70 in the middle of their two birthdays. Our second to youngest nephew turns 1 tomorrow. I cannot believe it. He has grown like a weed. More on that tomorrow. It's been a crazy season of celebrations for sure!

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It's amazing what shaving your legs, tweezing your eyebrows, cleaning your contacts, and cleaning & rearranging your nightstand and dresser can do for your self-esteem. I mean really, it's just insane how incredibly refreshed you feel when you get a chance to pay attention to yourself.

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I thought I'd brag on hubster a bit. :) I added a page to the above tabs called "About Hubster". Go ahead, learn about my better half and the best friend I have on planet earth. He's a pretty cool guy. I think I'll keep him around.

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We went to see Life As We Know It yesterday in the theatre. I'll try to post a real review of it soon, but the short end of it is: really. insanely. ridiculously. FUNNY. I was laughing soooo hard at one point I couldn't breathe and started snorting. And I didn't care. It was that funny. It was also incredibly touching and I was practically bawling toward the end.

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I had my annual physical last Friday morning. I loveeeee my doctor. She's amazing, godly, and fun. I'm still in awe sometimes that I've been blessed with her. I liked my previous doctor okay, but she left and they brought in this new lady. When I read the information brochure about her to see if I wanted to give her a try or go to a new doctor's office {cuz I knew I didn't like the other one in this same office}, she had good credentials, and then I saw that she attends a good, solid, Bible teaching church here. So I was intrigued and gave her a whirl. Best. decision. ever. And that was about a year and a half ago, but I'm just now realizing just how amazing she is. Really, she's extraordinary. She's knowledgeable on Fibro, is a strong Christian but is also really understanding like about my anxiety issues, and is very easygoing. Those of you with chronic illness know just how important your doctor becomes. It's a really big deal to me that my doctor is so great.

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My Fibro was awful last week. I don't know if I had the flu or not, but my Fibro was definitely freaking out. Glad that's over! This week seems to be {at least so far} much better! Indeed, I think it does help to be so relaxed and ready to dive in after a great weekend.

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I am sooo ready for tomorrow's election to be over with! Unending political ads on TV, so much mail, too many phone calls, and millions of dollars spent senselessly while trying to get our votes and it's all actually a major turn-off for me to even want to vote anymore. I used to be passionate about politics and making a difference. But don't worry, I'm voting, and I hope you are too!

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All my best to each of you! Hope this finds you all doing well! Thank you all for your recent comments, I can't tell you how much it means to me. Comments warm my heart like an ooey gooey fudgey brownie sundae. :)

Doctor & Fibro Update

I guess it's time for a Fibro update....

1) Exercise:

I joined a gym in mid-August. It's halfway between work and home. And I couldn't possibly love it there more!! It's amazing and I feel right at home. God in his sovereignty worked it out perfectly. I have a terrific advisor, two wonderful trainers, and an amazing nutritionist. I work out with a group of people (as of two weeks ago today) and they are all so nice and fun. They help keep me motivated and accountable. I'm learning a lot! I've managed thus far to push through the pain pretty well. It helps to have such an increase in energy. That part has been unexpected and I'm really pleased to see the results of that so far. I have not had any days where I've been completely unable to walk (just a little), and have only screamed out in pain a couple of times (at home, thankfully). I've felt like I was dying nearly every class, but my trainer is great and helps encourage me to keep going, while also keeping me in check to make sure I'm at the right pace & level for me without overdoing it. It's exhausting and invigorating all at the same time.

2) Nutrition:

This part has been a little frustrating and overwhelming for me. I'm not succeeding in it, despite cutting way back on a lot of stuff. The program is really intense, but my nutritionist is incredible. I could never attempt to do this fully on my own! It's hard to describe the program right now, but it's not like we're just counting calories. We count all the nitty-gritty stuff like proteins, carbs, fats, dairy, fruits, veggies, etc, to make sure we are getting each type or nutrient that we need throughout the day. For example, through the day I'm allotted 1700 calories, but if I workout I need a couple hundred more to make sure my body is fueled for the workout. As a part of those calories, I can have: 7 starches, 3 fruits, 2 milks, 7 proteins, 6 vegetables, and 9 fats. I also need 10 8 oz glasses of water every day. I'm aiming for 25-30 grams of fiber a day, and eating every 3 hours. (In the above list keep in mind things like cheese sticks are protein, and veggies like corn or peas are a starch.)

Yes, it's complicated. But on the plus side, everyone says once you get the hang of it, it'll come much easier. So while it appears overwhelming, I'm glad to know others have done it, succeeded at it, and that it does get easier. Otherwise I'd likely just toss it out the window and count calories only! But it is good for me to learn more about the foods I'm eating, what's in them, and how big my portions really have been.   

3) Doctor:

Yesterday was only my second visit to my new doctor, but I am just really loving her! It was my annual physical. I appreciate so much more of what she says about what's going on with me because my previous doctor liked to blame it on anxiety or sometimes that things were just in my head...but they were legitimate concerns to me! This new doc gives good opinions/thoughts about my medicines, and ways to improve or change things. She's easier to talk to (even though the previous one wasn't bad on this) and she's a strong Christian, which is so great and helps me so much to have someone to relate to! She's very knowledgeable about Fibro and I appreciate that immensely. She doesn't push anything on me or make me feel at all inferior because of the Fibro. She's very thorough and never has a rushed appearance. She diligently spends with me whatever time I need her for without trying to just run out the door. I just really felt like I was meeting with a friend instead of my doctor (although there's also still that clear doctor/patient separation). I'm very pleased!

And the results came back today from my blood test, and I'm totally in the clear. No thyroid or diabetes concerns, no stand-out cholesterol issues although I do need to keep an eye on it, no anemia (I showed up as mild anemia last year), and so on. I'm very pleased with this news!! 

4) Medication:

My doc is incredibly excited about the latest medication for Fibro called Savella but she's not pushing it on me or anything like that...just wants me to know about it and that it's now available in the U.S. (They've used it in Europe for years.) It's not an anti-depressant like most others are, and it really seems to work. The highest you seem to go on it is 100mg. That's good news too. In some cases for Lyrica to have really worked, people had to be taking over 350mg of it, which is just ridiculous to me!! And then those people couldn't really continue on with their lives from the drowsiness and 'out of it' feelings. Savella is not like that. The worst side effect in the case studies was nausea.

I'm not interested in going onto it right now, for issues I'm not willing to discuss here right now, but I hope a lot of people can benefit from this drug. I'm interested to continue learning more about it. If any of you end up giving it a try, please let me know what you think of it.

I'm working with my doctor now to slowly taper off the Elavil/Amitriptyline (sp?). I'm not convinced it's working and am tired of the side effects. But if as I taper off, I suddenly realize it was working and I just didn't realize it anymore, then I'll taper back up to it. It's a bit of a guessing game right now. One of these days I need to get back to my chiropractor and get some more natural medicine in me and less of this nasty stuff. I've seen it work so well for others and I know it could work for me. It's just so stressful to do all that extra driving each time. Maybe next spring. We'll see.

5) Life:

Things continue to be a bit boring and yet overwhelming for me right now. I don't know if it's the nutrition & working out, or what. But I've been in a funk. I haven't really been interested in blogging or Twittering or really keeping up with people. I'm having enough trouble staying in tune with my own life. I'm sorry to those of you who are new here and I haven't had a chance to really investigate your blogs much, I do plan to. And for you near and dear, older (as in how long I've known you) blogging friends, I'm sorry I've been bad at keeping up lately. But I appreciate your flexibility and understanding. It's just a phase. I'll be back soon.

Doctor Update

There are so many things I've wanted to talk about lately, from the Dove Awards (read a hilarious article from David Crowder [of David Crowder Band] here), to the latest flu pandemic scare, or even the possible death of one of my favorite tv shows Chuck after only 2 seasons. But alas, I only have so much energy for one main post today.

And I started with just that paragraph 2 days ago. {sigh}

As you know, I had an appt with a new doctor last Tuesday morning. It was the result of my previous doctor leaving her practice and moving to another city (just a month or two after my rheumatologist did the same thing). So the appt was mostly a meet and greet.

I'd spoken with a couple of blogging friends (one with Fibro, one with Lyme's) and really appreciated their input. They encouraged me to really just get to know this doc - not so much take a huge list of everything to go through and get advice on. So instead I focused on getting to know her and running her through my history (even though she has all my files, I wasn't sure how much she'd read and wanted to give her my version).

And that's mostly how it went. It was good; but there's not really a whole lot to say. But I'm fabulously excited to find out she's a Christian, and a solid one at that. I've never had a Christian doctor before, so this pleases me to no end!!!! She goes to a large area church that I'm familiar with, so I generally know her core beliefs are very similar to mine.

It was soooo great to talk to her a little bit about the emotional/spiritual effects of living with Fibro, and instead of being pushed toward a psychologist, she encouraged me to go back to my biblical counselor. She was very encouraging, and knew more about Fibro and the medicines available for it than my previous doc and rheumo COMBINED!

Whew.

But all in all, I don't know that she's going to be the very best fit for me. For now, yes. In the long run, we'll have to wait and see.

I still very much want to go the chiropractic route once I've been able to concentrate on weight loss, Bible study, counseling, and exercise a bit more. I think finding a solid routine that I can stick to will ultimately help me figure out a plan with the chiropractor for going to see him the extra hour and a half or so out of my way that it takes me. Right now, it's simply too exhausting to deal with. Have I given up on it? Absolutely not. While I think natural healing is certainly the way to go, for my immediate future it is not. I have to take one day at a time and not let all of this overwhelm me. Losing the weight is difficult enough without adding every single other pressure to it regarding fibro. If I can lose the weight, I think it'll help every part of me in the long run. So, for now, that's what I'm concentrating on.

Whoops, side ramble... okay, back to the doc...

I was so happy to hear that this doc has a pretty decent knowledge of Fibro and Lyme Disease (I wanted to be certain Lyme's had been ruled out, because I was not convinced from just the blood test). She talked to me for a bit about her knowledge and then we went through my history. From that, and my previous tests, she ruled out Lyme's. Now, I'm still not 100% convinced, and my blogging friend Melody has helped teach me a lot about it. I know I need to be my own advocate for this, so in that case to get further testing for Lyme's, I'm going to have to find a Lyme-specific doctor in the area, be tested and have the readings done at a lab that will read all the bands from the test, and then--and only then--will I feel comfortable that I know for sure.

So it was disappointing that this doc wasn't ready to do further testing, and yet I appreciated her comments about how much I'd already been poked and proded and how resistent she was to forcing me to do that even more. We talked deeply about exercise, which has been a really painful issue for me, and I really appreciated the way she spoke to me about it... not condemning or belittling in any way, but realizing that pushing over the initial hump is like pure torture, but once I'm past that I'll find that exercise really helps. It's just getting over the hump (a few weeks or so of regular, moderate exercise) and pushing through the pain, that's the hard part. And with Fibro you're supposed to push, but also know your absolute limit because if you push TOO hard, you can make it all worse and set yourself back completely. Knowing when you're nearing that line is a very big trick I have yet to learn.

So, lots of trial and error to come....

No medicine changes as of yet, but I'm happy to know more about what she knows in that regard, and that hopefully we'll talk about it next time. Sleep is the big issue right now and my Amitriptyline isn't fully doing the trick. I know Cymbalta is used for Fibro sometimes, but the one person I've talked to who had it, had such an awful experience with it that I'm not jumping on that bandwagon any time soon.

Any others of you had any luck with medicines?
If so, which kinds, what doses, what side effects, etc?

So overall, I think it went really well. I'm excited about some things, not so excited about others, but generally I am pleasantly surprised and happy with the results.

Hopefully this is the start of great things!!

Things I Like Tuesday

Those of you new to my blog, I started doing this thing called "Things I Like Tuesday" after my dear friend, Monica, over at Bolsa Chica started it... with the purpose of cheering ourselves up on otherwise bleak and yucky Tuesdays. She hates Tuesdays more than I do, but I loved the concept. It helps you get to know a bit more about me outside of just the Fibro, and it helps me focus on more positive things.

I'm still feeling really yucky so this TILT will be a bit shorter and no pictures (usually pictures are used to help spruce it up a bit). This virus has really hit me hard (i.e. nasty cold). I haven't been at work the past two days, and yesterday afternoon/evening was actually pretty frightening. I got to a point where I could barely move, stand up, or even change my clothes. I really needed a shower badly and that was REALLY scary. I waited until evening when Tim was home so I could call him if I needed him, but I tried to avoid it. I did need him to help me get dressed. (Oh the things we thought we wouldn't have to do have our spouses do for us until we were 80!) So needless to say, I'm really struggling with low energy levels, poor function, meager abilities to eat or sleep, and trying hard not to cough up a lung or blow my brains out (I mean into a kleenex...).

So with all that said, I'm super tired... so here's my attempt at a list...

1. I like my new doctor as of today's first appointment with her. She rocks. And I am SO thankful. I like her knowledge of Fibro and the hope that I'm feeling right now. I like that she's a solid Christian with the same core values as me. This is the first time that's ever happened. I like that she told me I just have a virus and she doesn't want to attempt putting me on any antibiotics. Bless you, dear lady. Antibiotics are not always my friends, even if sometimes they do ultimately help me feel better... they wreak havoc on the Fibro.

2. I like my husband's willingness to help at the drop of a hat and give his all for me. He must be so tired, waking up with me coughing, hacking, and blowing my nose out of my head. He ran errands for me last night, bought me supper (yummy Panera soup), and ran around like a chicken helping do things for me. You're so sweet, honey, I love you!

3. I like Oprah, The View, Home Improvement, A Baby Story, The Bonnie Hunt Show, The Ellen Show, The Doctors, Friends, Everybody Loves Raymond, and Still Standing... all the way from 9 am to 7 pm I have plenty of things to chill out to on TV if I want, resting and trying to feel better while going in and out of sleep, and mindlessly needing nothing to do.
(No, I don't agree with everyone or everything said on those talk shows, but I like hearing different viewpoints.)

4. I like sleep, when it comes.

5. I like purifiers and humidifers which help me sleep (if it's super quiet, forget it, I cannot sleep). They don't work like magic and do it every time, but they do help, and they help me feel better overall.

This got longer than I expected and I'm totally wiped....

Still Laughing

I'm still laughing many hours after realizing I did something incredibly stupid... and yet not so stupid when you think about "Fibro fog" which can be really frustrating and you feel like your brain is not functioning the same way it used to.

But alas, this is still funny....

After cleaning our cars last night out in the driveway, enjoying the nice weather, hubster & I then put the cars in the garage. As we went to play some basketball in the driveway, I put my keys in his open trunk, thinking surely we'd see them when we put the basketball away.

Didn't want to set them in the driveway where we'd trip on them... didn't want to leave them on the garage floor since we'd likely not see them... really thought we'd see them in the trunk when putting the bball away.

We did not. DOH!

So, yes, they're still in his trunk (1 hour away from here at work). The spare set... yup, in his car too because of my occasional tendency to lock my keys in my car (especially at the grocery store after work; I guess that only happened once but once is enough!). The third set is in the garage, where our keypad is busted and the only working remotes are either on our keychains or in our cars. The side door is too blocked to get it open far enough.

Wow, I managed to get in quite a pickle!!!!! Ach!

So, I had to cancel my doc appt and have to work from home.
*Although not totally complaining on that end.

At least I've given my coworkers & family a huge laugh for the day. Perhaps you as well ;) and yes, that's okay! I almost cried but then realized it was reallyyyyyy funny!!!!

I still feel really bad that I had to cancel the doc, and not be in the office for work. But, it turned out to be a really nice day, so I'm certainly not bummed about it!

Ohhhhhh I cannot believe I did that!!!! In retrospect it was really stupid... but at the time I thought it was smart. Now... not feeling so great about that decision!!

Any of you Fibro peeps do this too?

Come on now, don't lie... don't leave me alone here, please!!

Doctors and Moving On

Both my rheumatologist and primary physician have moved on from here within recent months. I just got my notice about my doctor a little over a week ago. I'm feeling quite frustrated and discouraged about this, but trying to look at it positively.

Perhaps my new doctor will be better than the previous one, and while I liked the one before a lot personality-wise, I wasn't always convinced she was the best fit for me. But I wasn't ready to move on either and go through the painful search of trying to find another one. I'm wondering if this is the push I need. The doctor replacing my previous one will be tried, and we'll see how she is before making a decision. Hopefully we're moving on to better things, instead of falling back even further. I have a couple other things to take care of first, but I'm guessing in another month or two I'll be able to tell you the verdict.

My rheumatologist certainly wasn't the right one for me. But they are very hard to find... especially good ones. Any that have been recommended to me so far aren't covered by my insurance. It's frustrating and discouraging, but I won't give up. I just need some time to find my way.

This makes me all the more thankful for Dr. Tim... my wonderful chiropractor that I've been going to since the end of October. You've heard my stories about him... he's wonderful. He's experienced with Fibro and has a wide variety of ways to try to help me. His assistant also has Fibro and I've learned a lot from her. I took a break from seeing him during the winter since it's such a long drive and too exhausting & stressful for me during the shorter, darker days and attempts of fighting off snow & ice. Once I start going back to him in another month or two, I hope to increasingly see growth and change in how I'm feeling. But I also know it's going to be very taxing on my strength, energy, and stress levels because of all the extra driving (as if it wasn't bad enough already--I have about 45 min or so each way on average to/from work, plus the 35-40 or so min to/from chiro... eek!!).

I'm not sure what to do about all of this sometimes... I don't think most "normal" people understand just how exhausting and difficult and overwhelming this entire process can be (no offense, I know they all mean well, I just mean they don't know/understand in the same way because they haven't experienced it). I want to feel better... but the process itself can be very, very taxing. I do the best that I can and pray for strength and grace each and every day.

To my close friends and family, thanks for your understanding and patience as I work toward feeling better, at my own pace and what works best for me under these circumstances.

New Chiro Appt # 4

Last night I had my 4^th chiropractor appt with this new guy. It was interesting, like always. Tim in his very sweet ways left work early to drive me there. I was very thankful, especially since last week’s two trips there (which doubles my commute each time) had left me utterly exhausted, and since yesterday was cold, dark, and rainy. The time change and weather shift didn’t help much either. Since developing Fibro, I’ve been much more sensitive to these sorts of environmental changes, and it was a relief to hear the chiropractor’s assistant discuss how much it affects her too. She has Fibro and Chronic Fatigue Syndrome (they usually go together) and has seen significant relief since starting with this chiro a couple years ago. It’s always really nice to talk to her, and to also be able to talk to a doctor who has 20+ years of experience with Fibro. Last night when I asked some questions about how I’d been feeling, it was nice to hear that it’s normal for Fibro patients. Getting these sorts of questions answered and talking to people regularly with experience is the absolute best part of this and makes it worth it.

Last week he moved my stomach. So this week I had to ask some more questions about that, and to make sure all the pain was ‘normal’. For someone in my condition, it is. Whew. This chiro has some weird knowledge I’ve never seen before and can figure out what part of my body is crying out for help by using either a leg-length test or a reflex test. It’s very weird. It’s very unique. It’s interesting. In Tim’s words it’s a little coo-coo. But I have no doubt it’s real. He figured out last week that my stomach/digestion system needed some work. Yesterday it was my lungs/respiratory system. We talked about oxygen and how Fibro patients don’t get enough oxygen to their cells, get sick more often and it lasts longer, etc. So on the definite plus side, the treatment he gave last night helps fight infection. Since Tim and multiple coworkers have been sick for the past week, I’ve been hoping and praying that I wouldn’t catch it… and doing everything in my power to try to prevent it. I leave for Rhode Island a week from yesterday, and just cannot get sick. So I’m definitely hopeful now after last night’s treatment that I won’t catch it! They used lasers for the treatment which helps excite the cells in your body toward that specific organ to trigger them to pay attention to that organ and work on the issue. It’s really weird to just watch lasers going across your body and think “are you serious? You think this is helping? It just looks like I’m a book at the library getting scanned in!” Weird, for sure. But after a couple minutes I really started feeling the effects!! And it was PAINFUL in some areas I wouldn’t have expected. It made my left part of my neck really hurt and I could feel it every time the laser passed over that area. Coo-coo. But I’m feeling better today, despite dealing with some weird pain, tingling, twitching, and muscle spasms in more areas and more frequently than usual. But that’s okay… if this helps me get better I’m all for it!! We just have to wait and see.

Now the hard part is my travel schedule in Nov and Dec, and somehow trying to find a way to get down there for appointments in the craziness of it all.

That’s the latest…

New Chiropractor

I've seen my new chiropractor now three times (last Wed, this Mon, and this Wed). It's utterly exhausting me to double my commute time for the day (so now about 3 hours on the road the days I go to the chiro), but so far I remain hopeful.
This doc really knows his stuff. He has 20 years of experience with fibro patients, and a really good success rate in helping them to feel significantly better. I just have to give it at least 3 months to really know if it's making a difference or not. The hardest part of it all is that drive. Beyond that, I like him... he's easy-going, personable, very knowlegable, listens to me, trustworthy, funny, cares deeply for his patients, and has a wide variety of background and treatment options.

The first visit last Wed was really nerve-wracking for me. We spent most of the hour and a half talking through stuff and not doing too much work. He did identify that I have a thyroid problem through an amazing process I cannot even begin to describe, because I hardly believed it myself. His assistant did a 2-minute deep tissue massage on me that I reacted to because of the oil used which has a cooling effect. I don't handle that well. So we were done quickly after that, and I was a bit on edge about my next visit.

My second visit on Mon made me a believer. :) It was amazing. His treatment plan that night included two items I'd never seen or heard before. One was this little handheld tool that adjusts you instead of the really hard adjustments like where a chiro stands behind you and twists your neck to adjust it (which apparently is really bad for fibro patients since it can cause flare ups). The other was another handheld tool that sounded almost like a drill but it was with this big, soft ball on the end that sent vibrations through you that did something that made me feel TERRIFIC! It hurt while he did it, but afterward it was great. I was there for about an hour this time. I just love the people, the chairs, the recliners in the waiting room, and so much more.

My third visit was last night and it was... different. He'd had me try this powdered drink supplement that I gagged over the morning before and there's no way I could continue on it! So he switched this last time to two vitamin pill supplements, one that I take one of with each meal, and the other I take three of with each meal - yuck (today was my first day on them - so far so good but don't know yet how effective)! But, if it helps me feel better in the longrun, then I'm all for it. I figure at this point, I'll try just about anything (so long as my body can tolerate it). The weird part about this visit is HE MOVED MY STOMACH! It was sooooo weird. I'd heard he'd done this before, but experiencing it was like nothing else. I'd told him how my acid reflux and IBS had really been acting up, so he tested me and said my stomach was pushed up into my diaphragm. Just that he could know that amazed me! (No machines or anything, just a poking/reaction test.) It was really cool as he really knows his stuff. But it hurt like nothing else. It was terrible. I was practically screaming because where he had to push is a very sensitive area on my body. I'm still really sore and in pain today, but it's slowly subsided throughout the day. I really hope it helped make a difference, but it's too early to tell right now. This visit was also about an hour but I hear after a couple more I'll probably be down to 15 minutes or so, depending on the treatment plan.

I'm happy with how it's going so far. I admit to struggling with doubts about it, but after dealing with it all so long, sometimes it can just be hard not to see immediate results. I know that's unrealistic, so I'm trying to be patient, wrapping this in prayer, and hoping for amazing results in a few months. I hope I won't be disappointed. So many things have been pointing me in this direction.

That's all I can think of for now. I don't know if it's the extra driving or what, but I'm exhausted beyond comprehension. I feel like I could sleep for a month and never be rested well enough. I don't know if it's the time change adjustment still or that everyone else around me is sick and I'll probably get it soon... I don't know. I'm not even sure how much sense I'm making right now. Time for bed.

Doctors and what not

Today I got a call from my doctor's office telling me my doctor was on vacation and I'd need to reschedule. ACH!!! One of my prescriptions will run out during that time now. I was so proud of myself for setting that appt up like a month and a half early... and now she's gone for over a week. Grrrr.

My rheumatologist remains a useless bit of information. The only way to figure things out is to do my own research since what I learn is more than what he seems to know. I know he worked hard to get to where he is, but I'm not sure I understand why he doesn't try to keep up more with the changing world around him.

Sometimes it's easy to get really frustrated and discouraged... but I'm trusting in God and leaning on his everlasting arms.

Follow-up rheumatologist appointment

This morning I returned for a follow-up rheumatologist appointment. It was a big disappointment in most ways.

The appt started off pretty well. I was 15 minutes early for my appt and they got me right in. But it was all downhill from there. The nurse was incredibly snippy and clearly didn't want to be there today. I was up a few pounds on the scale and immediately I got discouraged... I'm not sure how that happened. Then we went into the room and the nurse took my blood pressure. I always get anxious at this point. I can't really explain it, but there's something about being in the office and getting nervous about what the doctor will say that puts me on edge. Then there's just the BP taking itself. A couple times it was up a bit, and from there I have just always been nervous about it. So it was 166/110. That IS RIDICULOUS! I asked if she was sure she used the right size armband and indeed she did. I didn't feel that nervous but once she told me that, I got freaked out and even more nervous! What a vicious cycle.

Then I proceeded to wait for 30 minutes before the doctor came in. I spent a lot of that time crying and feeling nervous about my BP. It's all so silly and I don't always understand it. I spent the time praying and putting my trust in the Lord, but I still felt nervous.

As soon as the doctor came in and we started discussing my blood test results and such, I calmed down and felt fine. He only spent about 10 minutes with me and it wasn't nearly as helpful as I was hoping, but it wasn't terrible either. We did discuss my BP but since I'm on medication for it (only because of getting nervous at times like this), since my primary doctor knows about it, and since I monitor it at home and otherwise it's fine, he wasn't worried about it. I took it later at home and it was back to fairly normal for me 128/81. So, whew.

The rheumatologist did prescribe Lyrica for me and I'm starting on a low dosage of 50 mg once a day. From what I've read about Lyrica, that's unlikely to do the trick but we'll give it a try and see. He wants me to monitor how I feel and come back again in a month. He went through my labs with me and everything looked fine except my thyroid readings. Those were slightly elevated and something he read didn't look right to him - a comment on the lab but he didn't share w/ me what that was. Whatever it was made him wonder about the results and he had me do them again. So as soon as I was done and had my precription in hand, I went downstairs for another 30 minutes of waiting, registering, waiting, registering, and finally getting poked with a needle for 5 seconds before I could finally leave.

Despite that nothing bad really happened, I was feeling emotional so I called Tim (his office is only a minute down the road) and he met me outside the building to give me a big hug and kiss. That was so great and absolutely made my day. I have the best hubby in the world. :)

Tim & I within an hour or so after he proposed on stage at our college's "Davis Holl Follies" (basically a weird talent show of sorts) over Homecoming weekend in Oct 99.

HE IS THE BEST!!

p.s. thank you Joel Foudy for the great picture!