my pink toes

So I started taking a drug for my fibromyalgia. Yes, that drug, the one that’s in those commercials these days. At my rheumatologist’s recommendation, I worked up the dose from 50 mg to 125 mg over a period of 6 weeks. I couldn’t really tell if it was working for the pain (it waxes and wanes day to day – it’s the big flares that flatten me out of nowhere that are the worst) and I seemed to be tolerating the side effects well enough (some swelling, a bit of morning shakiness), so we upped the dose to 150, with the intention of taking it to 200 for a few months to see if it made a difference in the frequency and severity of my big pain flares.

Two days later, I had a very scary experience. I could NOT get up out of bed. My brain did not focus. My mom was having surgery and I needed to drive (and park) in downtown Seattle for her appointments. I was very late, and very freaked out. I had to keep blinking my eyes open and willing myself to concentrate. I felt like it was 3am after a long cross-state drive and I was trying to do just a few more miles. But it was 10 am. And I’d had plenty of sleep. I have never thought so hard about driving and parking and walking in my life.

I thought maybe it had just been a freak reaction of the Lyrica compounded with the couple few many capirinhas I’d had the night before, but the next day was even worse. I had the same staying-awake-after-taking-a-sleeping-pill-feeling, but instead of wearing off at about 2, it lasted until 4:30. And even scarier than being a danger to myself, all of Seattle, and my children by driving my mini-van? Was not being able to write. I sat at my computer, and what was in my brain was not what I typed. What was in my head, I could not put the right words to. I typed and backspaced and typed and backspaced and typed and backspaced and FREAKED THE HELL OUT.

At that point, I knew I could not take this drug any more. I did the customary paranoid Google search and found out that Lyrica was trying to kill me. Of course, according to the internet, my tap water is trying to kill me too. And, orange juice causes three-headed newts with purple glowing tails to grow OUT OF YOUR EAR. But this Lyrica? It can be some scary stuff. Turns out I'd been having more side-effects at the lower doses than I realized - like having conversations with my sister-in-law that I don't even remember.

My doctor’s office said that I could stop it altogether, assuring me that I was not on a large enough dose (!) nor had I been on it long enough for it to cause the Google-proven brain damage by going cold turkey. Or I could taper it over a week if I wanted to. That night I took a half-dose and slept from 7:15 pm till 8:45 am. I tapered one more day and then said, “forget it”. Today, I can sit and write and think my thoughts and my typing is only as crappy as usual and my writing only as bad as my normal brain makes it.

The clinical trial dosages are 400 mg or 600 mg between ONE and THREE TIMES A DAY! How anyone’s brain can work on that is a mystery to me. I’d rather eat nitrate-laden hot dogs, wash them down with fluoride-poisoned tap water, and munch some trans-fat-infused snack cakes than take THAT kind of risk. Or, gargle with radiator fluid.

I now have much more compassion for people who have to deal with horrible drug side-effects. Thankfully for me, I can manage my fibro well enough most of the time through an ever-changing combo of rest, exercise, significantly reduced expectations, heat, Mariner’s games, and tears. (Significantly-reduced expectations help with making it through the Mariner’s games as well, but that’s another story). Some people are in excruciating pain ALL THE TIME. Mine is low-level all the time, and only excruciating occasionally - the fatigue kicks my ass every day. People with nerve damage are grateful for Lyrica because they can actually function. I also know that for some fibro sufferers, Lyrica has been a miracle drug that gives them some function back. I hope the side-effects for them are less than mine were, and I also know their pain is much greater Yeah, the pain's been worse since I stopped taking it, but I'll take it over the alternative.

The biggest irony: the DAY I tapered the Lyrica was the DAY the FDA approved Cymbalta for fibro. I’ve been taking Cymbalta for a while now because it has two other components I already need (anti-depressant, and anti-anxiety) and I had read it could help with chronic pain. I'll stick with that.

Filed Under "Fibromyalgia" on June 20, 2008 | Permalink | Comments (3) | TrackBacks (0)

You hear that? Those awful noises? The crash crash bang thud bounce crash thud bounce bounce bounce crash? Yeah. That's the sound of the juggling balls and spinning plates that I have dropped.

I may have gotten an "A" in all the classes I've taken this year, but I'm pretty close to being on probation for my dismal grade in Life Management. We have missed birthday parties, eaten poorly, and rummaged for clothes in laundry baskets. I have mis-remembered more appointment times than I care to count.

Sure, I've had a lot going on with two close family members having serious health problems, having chronic health problems myself, and still having a 3 year-old. Did I mention I also took 15 credits this year? Just these things combined have more than swamped me. I've been bailing my boat for a long time, yet I sail clumsily along - arriving late, awkward, and looking like a wreck.

I ponder the "fairness" of it all - I often feel that I'm not enough because I can't be Wonder Woman (wouldn't you love to look that great in Granny Undies?). I continue to struggle and process and pray. I need to realize that I did not "win" the genetic lottery and get the unfettered body that only needs 6 hours of sleep and can go like the Energizer Bunny the rest of the time. I actually "won" the entire other end of the spectrum: A body that needs lots of sleep, that is prone to overwhelming fatigue, that can collapse me into bed with bone-crushing pain without much warning. Mostly I'm OK with it now. Sometimes I think I can maybe even see that God is teaching me through it. But mostly I'm just OK. I'm still learning how to balance everything I NEED to do, WANT to do, and CAN'T do. Sometimes, all the balls and plates drop.

This is one of those times.

The latest crash bounce thud crash bang happened this morning. I had planned my next two days of baking and celebrating out in a way that would be (almost) do-able for the real me - and then I discovered Book Group is tonight. TONIGHT! AND: we are discussing THE BOOK I BROUGHT. I had lost the book for a while and just found it last night. I've sure enjoyed the 30 pages I've read so far...but I hear it has a big "twist" ending I need to be able to opine intelligently about.

My strategy? Get my Book Group drunk. OK, so not drunk drunk, but "pleasantly tipsy and therefore generous feeling". I'm hoping that way that they won't notice how little I have to say (about the book anyway). Think it will work?

Filed Under "Books, Fibromyalgia" on June 13, 2008 | Permalink | Comments (3) | TrackBacks (0)

Warning: Long Whine Ahead, with a dose of TMI. Feel free to skip this entry.

I was up the first half of the night with Peter, who threw up six times (the first of which tagged the comforter, the sheets, the pillow, the bedskirt, and the wall - pooling into a giant, disgusting swamp on the floor.) Dave gave Peter a bath and I cleaned the room. I then offered to take the rest of the night, as Henry had the same thing on Friday night and the Amazing Dave got up every time, changing sheets 3 times and helping Henry.

Peter stopped barfing around 2:30am. Unfortunately, I woke up barfing at 3:15 am. I was throwing up and not sleeping until 6 am, when I finally dozed until 9am. I am also in the middle of a huge Fibromyalgia flare - my arms, fingers, wrists, hips and back hurt so much that I couldn't fall asleep even though I was exhausted. I threw up the meds I took for pain relief last night and figured they'd just come right back up this morning (good call, as I kept throwing up all the way to 3pm). And on top of everything else, I'm having my period. I am as sick as I have ever been.

I had to lay in bed all day and finally got some liquid Vic0din down around 4, and it stayed down. I finally slept, until about 6 - just in time to catch the State of the Union address.

I have not been this sick for as long as I can remember. I couldn't even check email until 6pm - you know that's sick for me! I was far too sick to even watch TV - I could only lie there and listen to podcasts. God bless Dave, for staying home and working while taking care of the kids. God bless Henry's friend, who invited him over to play in the snow for the day (I already have big guilt on snow days because I can't go sledding with my kids or play in the snow without putting myself into a big flare - I started in a flare and quite literally could not get out of bed).

Water is staying down, and I could actually follow some of the State of the Union. I hope I feel better tomorrow. It makes me envious of small children - Peter feels fine now (aside from the lack of sleep).

I'm so grateful to have a support network to get me through days like this.

Filed Under "Dave Smith: Wonder Husband, Fibromyalgia, Motherhood and Apple Pie" on January 28, 2008 | Permalink | Comments (3) | TrackBacks (0)

I am so bummed! I'm supposed to be at the amazing Jen Zug's house, sipping Jitterbugs and swapping recipes with some fabulous women - some of whom I've met before, and some I would meet tonight and love instantly. (Shout outs to Alecia and Jenny - boo hoo - I wanted to see you tonight!)

But I am in So. Much. Pain. I was in a lot of pain yesterday...I felt it coming on. I've been in a flare recently and just knew it was going to get bad. By the time we saw our playdate friend home yesterday, I could hardly stand. I've been in horrible pain, with a few excruciating bursts ever since. In the middle of a particularly bad wave, when I was doing my deep Lamaze breathing, I complained to my husband that I didn't even get a baby out of all this pain. He said, "Not that you'd want one, of course!". Yeah, I can not imagine this body surviving another pregnancy, let alone another first-year-of-babyhood-nursing-and-sleep-deprivation. But at least labor pains had some benefit, some purpose. This pain has no purpose at all.

So I am extremely disappointed. I LOVE to share recipes. The quickest way to my heart is to ask me for a recipe. And I am always on the lookout for something new.

Anyway, here is a list of recipes for you lovely ladies that I don't get to hang with tonight *sniff* and for anyone else who's interested! I can't eat beef, so they're mostly chicken and turkey recipes . All recipes are pdfs. You'll need Adobe Acrobat Reader to see them. I took some extra time to modify them with my latest tried-and-true tips and notes. I hope you like them!

Enjoy! And email me your faves, or link to them for me, too, K? I'm going to take another Vicodin and just stare at the wall for a while.

Chicken Cordon Bleu
Chicken Enchiladas Best. Recipe. Evah.
Chicken Marinades
Chicken Pot Pie Not too crusty- it uses puff pastry instead
My Favorite Lentil Soup Wait! Even people who hate lentils love this soup!
Pumpkin Muffins
Sloppy Joe and Sloppy Joe Casserole
Spanikopita Quiche
Thai Chicken Satay with Peanut Sauce (Also, Pad Thai)
Turkey Burgers
Turkey Meatballs

Filed Under "Fibromyalgia, In the Kitchen" on October 03, 2007 | Permalink | Comments (1) | TrackBacks (0)

wonder woman Alas, I am so very
very far from her greatness.
I do have cool Grandma
undies like she does, though!

I gave up “my” time on Friday to make a birthday cake for my beloved now-7 year old. He requested a Lego cake, and I wanted to oblige. My creation won’t win any awards, but I’m quite proud of it. He was thrilled, even though he doesn’t eat frosting! (I made him some extra cupcakes without frosting).

Saturday and Sunday were full to the brim with celebrations, and unfortunately, with pain. So much pain, that I was unable to read the much-anticipated Harry Potter*. I was able to sleep 5 hours on Sunday afternoon, but I was so too far gone by then to stave off the inevitable raging flare.

I’ve been in so much pain this last week, and it continues today. I had to take 3 Vic0din just to make it through the day yesterday. I’ve had 2 already today, and will need another to make it through the evening of Lego shopping I have promised Henry. My entire body is inflamed, and I have a low-grade fever. Everything hurts. Everything. I’m exhausted and completely on edge emotionally and physically.

The fibromyalgia is becoming a bigger deal in my life. Not just because it seems to be getting worse, although that may be contributing to it. But mostly because I am learning (slowly, badly) to take care of myself. I have lived in denial for a long time, and it has caught up to me. One of the reasons I held so tightly to the denial is fear: primarily fear that people only like me for what I can do – that I have to be SuperLeah for anyone to like me, even a little bit. I have to be a great hostess, help everyone out, befriend everyone, throw great parties, send the most thoughtful thank-you notes, have the most positive attitude, exude confidence, be the most secure in my faith, be the most amazing mother and the most self-less wife, etc. It’s been very hard to let go of this fear and free-fall through unfamiliar air, hoping I’ll land okay – bumped and bruised, but hopefully intact.

It’s been hard. I know I’ve frustrated quite a few people. I frustrate myself. It’s so hard not to try grab back hold of the SuperLeah idea, but my cape is torn beyond recognition and my superpowers are now completely depleted. I have to hold on to what I have and pray that it’s going to be enough. I am very blessed. I have a great church, small group, husband, therapist and some key friends. I also know that I have been putting stress on the husband and key friends’ relationships. I have worried about the fallout. I continue to worry. I’ve had lots of reassurance along with a few emotional blows.

Yesterday I met up with a group of women that I had not seen in a long time. These playgroup moms were very important to me during Henry’s first four years. They also knew me when I was still in denial. One of them, in particular, had every right to be angry with me. We had kept in touch for quite a while, through her back surgery and other issues, but I had not been in contact for almost 10 months, during which her father died and her husband had a heart attack. I had thought about her a lot, but did I call? No. Did I email? Yes, but only once or twice. Did I send a card? Only at Christmas. Was I a lame friend? Absolutely. I begged her forgiveness, and she acknowledged her anger at me. But she also showed me incredible grace. I know I injured her, but I also know she chose to forgive.

I finally got time to write today (after waiting an hour for a blood test) and opened my laptop to a terse email from a different friend about how I have let her down for the last time and she may never talk with me again. I worried that my letting go and surrendering to the freefall would lead to situations like this. I worried that taking care of myself would cost me relationships. I have lost my first friend due to my inadequacies. I’m pretty sure she won’t be the last. It terrifies me, but I fear it’s the truth.

I know I am not doing this well. I am learning, and am learning badly. I try to take care of myself and help other people at the same time, and it rarely works out. I am still learning balance, but sometimes I leave others in the lurch. Some forgive me and show grace, teaching me how to hope and love and do this better. Some do not. I need to learn from both situations.

I am doing this badly, but I don’t know how else to do it.

I have chosen to take care of myself and put my myself and my family first. This is incredibly stressful on many levels. Many people don’t understand. Someone quite close to me thinks that having children is the most selfish thing one can do. In my case, I do struggle with that. I can’t even manage to raise my children without help. What made me think I could do this? I am a huge drain on everyone around me. I worry that I am not enough – that everyone thinks I am not worth the effort and would be better off without me. What could I possibly have to offer?

And my faith is taking a beating. I’m trying to turn to God for refuge in this time of stress, but I’m worrying that He doesn’t think I’m Enough either. What could I possibly have to offer God at this moment? I can’t fathom. I can’t see what I have to offer to anyone.

I’m just plugging along, one foot slowly in front of the other - hoping, dreaming, wishing and praying for the fog to lift, for things to make more sense, for me to feel loved and at peace. I know that eventually, things will work out better. The dust will settle enough for me to get used to my new surroundings. The freefall will end and I’ll be able to discover who I am and what my value is. Faith, hope, and dogged determination is all I have. Looking into my children’s eyes, I know it will be worth it. Eventually.

*And yes, I did finally manage to read the last (sniff) Harry Potter – I finished it last night. I had to re-read huge sections of it as I went along, realizing that the narcotics had blurred important parts – the benefit was that it made it last longer. And I’ll bet I’ll pick up even more upon the inevitable re-readings. Yes, I thought it ended well – and more importantly – correctly. Does reading this make me selfish? Probably. But I’m in too much pain and am too exhausted to process that right now. If only St. Mungo’s could mend me…

Filed Under "Depression, Fibromyalgia, Journey" on July 24, 2007 | Permalink | Comments (6) | TrackBacks (0)

Such sad, sad pink toes

The reality was that I was pushing my body to the limit and beyond each and every day. Instead of feeling these limitations, embracing them, and learning from them, I continued to destroy my body and relationships by living in denial and lashing out at myself and those closest to me.

I am now listening to my body more. I enjoy my life, my friends, and my children so much more when I get the rest I need. I just don't like acknowledging how much rest that really is. It's immense. I am grieving so much loss of perceived ability. I am grieving many things. But I know that this is the way through this mess and the way to true healing and true relationships.

I have to accept and embrace my limitations.
I am slowly, slowly learning how.

Filed Under "Chronic Babe-ness, Fibromyalgia" on June 09, 2007 | Permalink | Comments (1) | TrackBacks (0)

More inspiration from Mike Yaconelli:

I am beginning to understand that faith is not the way around pain, it is the way through pain. Faith doesn't get rid of the opposition, it invites it over for dinner. Faith doesn't give you the winning point at the last second, it ties the game and sends you into overtime. Faith doesn't give you the solution, it forces you to find it.
- Mike Yaconelli

We're attempting to convince the world how good Jesus is by how great we are. This is precisely how Madison Avenue sells toothpaste, automobiles, and underwear. People don't need any more images of success, wealth, and power; they're surrounded already. What they need are their sins forgiven. What they need is healing. What they need is love. - Mike Yaconelli

These quotes really resonate with me. I have spent my life trying to be Superwoman and then Supermom and sometimes SuperChristian.

Why? Because I bought into the lie that if I'm a Christian, things should always be going right. I'm not sure where we got that idea. Certainly not from the book of Peter. Maybe from Jesus' words in Matthew 11 "my yoke is easy and my burden is light". This "selling" of Christ as a way that all things will be perfect is one area where the American church has gone terribly wrong.

I think this has also been a big factor in processing my pain issues. If I'm a Christian, I shouldn't be in pain, right? This has been said to me as directly as "Your pain is a result of some unrepented sin in your life" and as subtly as "If you had faith, you would be healed." These statements roll around in my head, wearing their familiar grooves along my long-traveled pathways of thought.

I believe God can do miracles - I believe he can heal.
He has not healed my physical body.
How can both statements be true? I don't know - I may spend a lifetime "finding the solution" to this dilemma. Jesus has healed and changed many painful things in my life. I have seen and felt Him at work in me, softening my rough edges, gently showing me things I need to change, and redeeming my heart - making me believe - slowly, slowly - that He loves me so fully. The more I feel the love, the more entranced I am by Him. I have come to believe that I may actually be lovable after all. Perhaps I could never come to know this if I were able to be "Superwoman" and sell Jesus like he were toothpaste. Only by being broken could I know how powerful the Healer is.

The truth is, life is a struggle. My life may be messier than most, but honestly, I doubt it. I have pain, frustrations, difficult babies, and financial realities. Following Jesus doesn't make all these things go away. Instead, I am learning how to forge forward, slogging through the muck of my life, holding firmly to Grace. This is Real. This is where I meet Jesus and where I find love and purpose and hope in the journey.

Filed Under "Faith, Fibromyalgia, Journey, Quotes" on May 27, 2007 | Permalink | Comments (3) | TrackBacks (0)

Running low on spoons today

I have fibromyalgia, which means that on any given day, I hurt all over. Sometimes a lot, sometimes a little, but every day I’m in some sort of pain. It is mainly concentrated around my hips, and the theory is that although FM is not necessarily caused by a traumatic injury or motor vehicle accident, such events can bring out FM. I was in a serious car accident in 1991. The lap belt saved my life, but did lifelong tissue damage and since then I have been in pain every day.

After pursuing treatment for 2 years past my injury date, it finally became clear that something else was going on in my body beside an acute injury. I was fortunate enough to have a couple fabulous healthcare providers (sprinkled in with the many other unhelpful providers) who knew about fibromyalgia and suggested that might be what I had. I finally got a “real” diagnosis from a rheumatologist last fall. I already knew it was what I had, and my PCP has treated me as such, but I decided I needed the diagnosis in writing to help with my own emotional acceptance. Living in denial on and off for 15 years wasn’t very effective.

I still struggle with this illness. It’s one of those “but you don’t look sick” things. Yes, I know, I don’t look sick, but I’m in pain almost all the time. I don’t talk about it all the time, because I get tired of it. Sometimes I am biting the bullet and putting on the happy face, but if I didn’t, who would want to talk to me? I bore myself with the constant pain-awareness. I have a few people I can be completely honest with and I value that very much. Frankly, so many people don’t truly believe I’m in pain and I’m too exhausted and confused myself to educate them so I save my breath.

And if one more person tells me that they think all this mythical-achy-stuff is going to *poof* magically disappear when I reach my goal weight, I may either throw a bottle of painkilers at them (not likely, but tempting), or (more likely) burst into tears. I’m in tears now with the weight of this dilemma – when people say that they hope my pain will disappear when I lose my weight, they are blaming all the pain on me. They are saying “you are in pain because you are fat.” I weighed 190 pounds when I was in my accident in 1991. I’ve been in pain at every weight I’ve held since then– from 180 pounds all the way up to 312. I have other pains that are clearly related to my weight – like my creaky knees, sore heels, and lower stamina for some activities. But the constant achy pain and the debilitating fatigue are unfortunately here to stay. The pain is NOT MY FAULT. I have to tell myself this over and over again. In my house growing up, most everything was my fault, so I’ve learned how to blame myself for everything. I did not bring this pain on myself, I did not ask for it, and God is not angry with me. I am still in therapy and constantly reminding myself of these things. Please stop making it even harder.

I’m cranky today. I’m in a lot of pain. I wish this was not one of the main narratives of my life. But it is. With God’s grace and help I will learn how to incorporate this narrative into the cohesive story of my life.

******
Here are some great links for helping understand those with chronic pain:
Anonymous Letter to People Without Chronic Pain (I’ll probably do my own version of this sometime in the future)
Tips for Friends of Chronic Pain Sufferers
Spoon Theory (AWESOME analogy of what it’s like to live with chronic pain)

I have found immeasurable support and understanding at ChronicBabe.com and most of these links were discovered through their great site.

Filed Under "Chronic Babe-ness, Fibromyalgia, Medical Freak(out)" on May 21, 2007 | Permalink | Comments (1) | TrackBacks (0)