Summer Summary

I wrote about my summers not too long ago, how they all seem to take on themes. I like it best when the theme is TRAVEL, but not much of that happened this summer. What did happen was lots and lots of doctor visits to try and figure out why I'm so drained all the time, more than just the fibromyalgia can explain. My instincts, that there was something more going on, turned out to be accurate- I have anemia. The big question is figuring out why I'm anemic, and the big task is to get my iron levels back up, which has proven trickier than anticipated since I found out that I'm allergic to sulfa, which is what ALL of the prescription iron tablets are mixed with. It's been a lot of tests and a lot of appointments and a lot of phone calls to various medical offices and a lot of label reading to find OTC supplements without sulfa, but yet with enough mgs of iron to make a difference without taking 10 pills a day. There's still more to go, too- another test to check for internal bleeding, a few more tests to see if my iron levels are improving, and tests to follow up on the tests that revealed some minor issues that need to be watched. And a few weeks of physical therapy for my sore knee at the beginning of summer, which actually didn't help much. (Maybe if I did the follow up exercises...)

And then there's DH. He's also had some medical issues this summer, including physical therapy. We got to work out together for a couple of appointments; it was almost like a date!! Good times, good times.

So it's been a medically themed summer; that's my least favorite. :( But I'm perking along taking my over the counter iron supplements, and boosting the iron in my diet since the OTCs aren't quite strong enough. I gave up being vegetarian for now; if I can get my iron levels up to where they should be I'll cut back on meat again. I still don't eat meat every day, mind you, but I will buy a steak from Whole Foods, level 4 on their animal welfare rating program, once or twice a week. I'm also eating... gulp... chicken liver. Chicken liver is about the most iron rich food you can eat, so eat it I am. It's palatable, shall we say, when it's made up as chopped liver with lots of hard boiled egg and sauteed onion. I eat it on matzoh crackers with some tomato to top it off, and it's not too horrible. Oh, almost forgot, OJ on the side since citrus helps with iron absorption.

I bought a new cast iron skillet too, and I'm trying to cook in that as often as possible. Which actually isn't very often since DH usually cooks the meals that require a skillet and he doesn't like it, but I've cooked the chicken livers in it.

With all the iron I've felt a little better so I've gone out a few times to ride my bike to try to get more exercise. I love riding my bike- it always makes me feel like a kid again. That and a 15 minute daily walk for the dogs is the extent of my exercise program, but it's better than nothing. I still get so wiped out I can barely move, especially at the end of a busy day, and the day after a busy day. I cut back on most of the activities for the kids for the summer, but now that the school year has started again that's picking right up.

I hate giving in to it, but sometimes I have to. Back in May/June, when I first really started feeling poorly, I was blaming it on fibro flare ups but they were so much worse and much more frequent than usual. It really started affecting my friendships because I was always making excuses for why I couldn't do things, or why I was late, or unprepared, or whatever, since I was always too wiped out to do things properly. It's gotten to where I hate for friends to ask me how I am, because I don't know what to say. Do I lie and say I'm fine, when I'm really not? Does anyone actually want to hear it if I do tell them I feel like crap? Or do I brush it off with "I'm hanging in there", or something equally non-committal? Or just go ahead and go with the socially gracious option and lie, saying "I'm fine"? Or am I completely over thinking this? (Yeah, probably that last thing.) ;)

Blech- even I don't want to read this post, but it's how my summer went so I'm journaling about it for posterity. Here's hoping it's the last "medical summer" for a long, long time!!

Figuring Things Out

So, yeah, I mentioned taking care of my own health care issues this summer. One of the things scheduled was to see my GP and get orders for blood work, since the last time I had it done was almost 10 years ago. Well, I had the blood drawn and the results were released to me today via e-mail, and as it turns out I am anemic as all get out! I knew my iron levels weren't great since I can never donate blood, but they would reassure me that my levels were OK for my health just not high enough to donate based on the quick tests at the blood mobile. More in depth tests revealed a very different answer! The doctor hasn't gone over the results with me yet but it's pretty darn obvious given the numbers.

It explains a lot, really. I've been so tired lately but I was writing it off as fibro flare ups that just seemed to be getting more frequent and severe. My daily walks have been extremely difficult to maintain, although I've tried, and I can't seem to get anything done around the house. Taking the kids to their various activities and running errands has been exhausting.

I'm looking forward to seeing the GP again in a week and half so I can get going with treatment. I've been fighting the energy drain for so long now; I'm almost in tears realizing that I'm going to feel better soon. In the meantime, more "Kalicious" smoothies from Whole Foods are definitely on tap!! (They are LOADED with iron.) I'm also thinking I'm just going to give in until my appointment and chilax for a while. I've been fighting this for so long, pushing myself when I was too tired for words, that giving in for a little bit sounds heavenly.

My take away from this is, if you have fibro and you're feeling lousy, don't just assume it's the fibro. Get yourself checked out for other issues that may be causing similar or worsening symptoms.

Summer Rhythms

Even homeschooling families can find their lives quite a bit different once the traditional school year is over. Our summers always bring something new, sometimes good, sometimes bad. For the bad years, we lost loved ones in the summer of 2007 and 2008, and a very close family member was hospitalized for months after a serious medical emergency in July, 2010 so I spent a lot of that summer at his bedside. (The kids didn't miss me too much- we got our first dog the day after he was hospitalized and the second one about two months later.)

As for the good years, my daughter and I went to Europe in 2009, technically in the spring but close enough. The Wild Child was diagnosed with his reading disability in July, 2011, which was actually a good thing because then he started getting the help he needed. He finished with his reading tutor just a couple of weeks ago and he's turned into a bookworm! I know he's not technically at grade level yet but he's so close, and he loves books and reading so much that I consider it only a matter of time until he catches up then surpasses his reading level entirely. (He's always loved books- he used to grab encyclopedias off the shelf and drag them around the house when he was a toddler.)

Martha, Jr. and I went to Washington, DC last summer with a bus load of Girl Scouts and the pace of the guided tour just about killed me; I spent the rest of that summer in physical therapy for my back!! (Totally worth it, though- it was an amazing trip and WE SAW ALL THE THINGS.)

Going way back, two of my three children were born in summer. Their due dates were pretty close together but The Eldest was born a little early and The Wild Child was born a little late, so they're a couple of weeks apart. (Martha, Jr., aptly enough given her personality, was born EXACTLY on her due date in the fall.) And, well, I was born in the summer, come to think about it. (Now that really is waaaaaayyyy back!)

So as summer begins this year I'm wondering what it will bring. I have some projects lined up, one of them being my own health. I tend to put off doctor visits for little things during the school year- I'm too busy running around with the kids to schedule anything for myself, so if I can put it off until summer I do it. That means stacked appointments once the school year activities slow down- three doctors this past week. It looks like physical therapy again, this time for some tendinitis in my left knee, the result of a fall a year and a half ago. (NOT during the summer!) It's not too bad so hopefully I won't be in therapy for long, and the doctor said I shouldn't have any long term problems from it.

I went to another doctor for restless leg syndrome and she said, yes, I have it, and I can try a few over the counter supplements, and if they don't work she can prescribe something. After talking to her I realized it's probably my own darn fault about the RLS- I used to take a multi-vitamin then I stopped because the only ones I could find without soy (I have issues with soy) give me gas. (The stinky kind- not fun.) But the multi-vitamin had iron in it, and on top of that I was taking an iron supplement every other day. I continued the supplement every other day, but I didn't do anything to make up for the iron in the multi-vitamin. Since I have a history of low iron (not terribly low- in the range where the level is OK for my health but I usually can't donate blood) this probably wasn't the best idea, and it's probably why I developed RLS. Hopefully taking more iron again will alleviate the RLS symptoms, so that will be a problem easily solved- whew!

As for the third doctor, I went to her about my fibromyalgia symptoms. I was diagnosed about 13 years ago and haven't had much in the way of medical attention since then, at least in terms of the fibro. I don't want to take the prescription medications so I've tried to manage on my own. Well, I decided I should probably at least talk to a doctor about my symptoms and what's going on. What if the diagnosis wasn't accurate, (although I think it was based on everything I've learned about fibro) or there are some other underlying problems that could be addressed to make things better? Sleep apnea, for instance, or some sort of vitamin deficiency similar to the RLS problem- something that can be addressed without the meds. The doctor took my concerns very seriously and ordered all sorts of tests, including a sleep study, so it will be interesting to see what happens with all of that. I have to go sleep in a hotel for the sleep study; I don't know how much sleeping I'll actually be able to do, but I'll give it a try!

Alright, enough with the dreaded "wall of text"! Here's a picture of how we spent our day today; just because it's summer doesn't mean we can't still learn things, especially when the learning is fun!!

Frustrating Limits

Fibro stinks. One of the reasons it stinks is because of the limitations it puts on my life. I'm handling it as well as can be expected, some people are completely disabled by fibromyalgia after all, but I am frustrated that I can't do everything I want to do. I love the various groups I've been involved with, Girl Scouts, 4H, political campaigns, a local non-profit for kids, and a greyhound rescue group to name a few, but I can't do as much for each of them as I'd like. I constantly find myself saying "NO" when I would so dearly love to say "YES", just because I don't have the energy reserves to take on the work. This week was one of those weeks. Monday and Tuesday were both busy, busy days, up early and running around with the kids for various activities, and by the end of the day on Tuesday it was catching up with me. I struggled through a trip to the grocery store, then about passed out after I got home. On Wednesday I was bed ridden. I had a full "to do" list but just getting up out of bed made me tired, so I mostly didn't. I feel terrible that I'm leaning on my husband so much- he picks up the slack when I have those "fibro days", but I just can't. It feels like when you have the flu and you're over the worst of it, but you still feel lousy and weak, so you know there's a few more days of recovery and bed rest left to go. That's the exact feeling I have when I get a bad flare up. I stand up and immediately feel like I need to lay down again. Sometimes I can push through it, but that's hard to do. Sometimes I need to just give in, cancel everything, and rest. Thanks to DH, when I have those days I usually can get the rest I need; I can't imagine having to work for a paycheck while dealing with this.

So when you ask me to help out with something, and I say no with some lame excuse, it's because I'm feeling a flare coming on, or I know I'm over-scheduled, or I've taken on too much already, and I just can't. I rarely say it's because of the fibro, I'm not sure why, but that's usually what it is. Maybe it's because I hate acknowledging it myself- if I admit that's why I can't do something, then I'm admitting I have a disability. Blech. I want to feel healthy and alive and in control of my life, not limited and weak, but it is what it is. I can't say I'd be a Type A personality if I didn't have fibro, but I would be a much more active go-getter if I could manage it. Sigh.

Oh, well; we all have to handle the cards we're dealt, so here's to life and making the best of it. :)

Fibro Flare Ups

Mostly I can keep my fibromyalgia under control- I walk for exercise but not too much, I try to eat right, I try to live a low stress lifestyle and keep my schedule under control, but it still flares every now and again. Flares are the pits. I have friends who suffer from migraines (I don't, thank goodness) and it is debilitating for them. My flare ups are about the same- debilitating. I had a bad flare up yesterday from over-doing things the day before; not fun. It's like having the flu with the muscle aches and fatigue; it felt like I was trying to walk under water. I forced myself to get up and get some things done around the house but I would have to lay down between even the most minor chores. I cancelled everything I could cancel, which stinks since that meant the kids had to miss out on their activities, but I just didn't have it in me to drive them around.

Today is a busy day too and I'm still in the midst of the flare, but the activities are close by (driving is tough when I'm flaring) and don't involve much in the way of moving around. My family is pitching in to help out, too so I think I might make it! Having a good support system is crucial to getting through a flare; I think that helps more than anything to get me back on my feet.

It's frustrating because I have so many things I want to do! The fibro slows me down, but it can't stop me, so here's to carrying on!!

Home Again

Washington DC was a great trip and I loved spending all the time with Martha Jr. and the other girls and moms who went with us. (There were 4 troops in all; most of the girls had parents with them.) I spent a lot of time with the leader who coordinated the trip since I wound up sitting next to her on the bus. (Once the seats were chosen we all stuck with them for the rest of the trip.)

I was worried about holding up with the fibro. I kept up until the last day, but I almost lost it when we were getting to the airport. The wait to check my bags was excruciating, then after check in the suitcases had to be hauled over BY ME to another area for x-ray, then after that another long wait to get through security. I hate that airport!! We had plenty of time but I still felt rushed and shaky, my back had started to hurt, and I was wiped out. Oh, and the suitcase I had to check was broken- a brand new Samsonite, no less. One of the two latches busted and it wouldn't close properly. Luckily my roomie mentioned duct tape, and I actually had some! I had it because of the trip to Europe with The Eldest in 2009. I read a ton of travel blogs prior to that trip and one of them suggested packing duct tape. It went into one of the travel supply bags I pack all the time and never came out until now. It was a small travel size roll, it was super difficult to unroll, and it wasn't enough to go all the way around the suitcase, but it was enough to hold the bag together on the bus ride to the airport. At the check in counter the airline had packing tape they let me use- whew! The suitcase made it back home and everything was inside thanks to the tape, but I returned that suitcase as soon as I could get it back to Costco.

At some point on the last day I noticed my ankles were gone- yep, I had cankles. The last time I had swelling like that I was pregnant. I guess I was as tired as I felt if that was happening. (Cankles- that word tickles me. It should mean something fun and flirty instead of swollen ankles. I walked around all day telling everyone I had cankles just because I like the sound of that silly word.) The swelling was gone after a good night's sleep so no worries. What was bothersome though was my back. I was a mess from half way through the last day and the entire day after we got back, then it felt better the next day so I over did it, and it flared up again today. I couldn't bend over at all; I had to take DH to the grocery with me to get items on the lower shelves. He wound up picking up all sorts of stuff I dropped or bumped off the shelf in the store; I'm such a klutz. He said I was just doing it on purpose but I promise I wasn't!

But back to the end of the trip. I finally calmed down when we got settled at the gate, I ate a snack, (Martha Jr. and I got the last pretzels at the Auntie Anne's) and I took some Tylenol. Then it was a matter of getting all of our stuff on the plane and getting home. I had a center seat which I normally HATE since I get a little claustrophobic on planes, but it was OK. I was in between the troop mom I roomed with and Martha Jr., and we all kept our arm rests up so it was like we were sitting on a couch. Since the troop mom and I are good friends, and I was able to move around a bit since Martha Jr. hardly took up any space at all (she's a little bit of a girl) I was fine. The other mom and I chatted a lot of the way and that kept my mind off things, plus it's not a long flight. Then it was over and DH was picking us up and whisking me off to a good meal (kale and potato soup- one of my favorites) and my bed. I slept like a rock but I was still groggy all the next day, and of course I had the back problems I mentioned earlier. Luckily I have a good heating pad and a tens unit; I think that's why I felt better the second day after getting home. If I had taken it easy instead of trying to return that stupid suitcase and get some other errands done... Well, anyway, it will get better.

All in all, the trip was absolutely grueling but absolutely fun, too. I'm so glad I went and got through everything, and that the fibro didn't flare up and stop me from living my life. Yes, I had a flare up at the end, but I got through all the fun stuff first- take that, fibromyalgia!

I'll blog about the actual trip and post pictures eventually, once DH gets them all on the computer for me. I took a ton of pics- gotta love those digital cameras!!

Turtling

Introvert me- I'm turtling again. With the fibromyalgia, sometimes my schedule gets out of control and life gets overwhelming. When that happens I retreat into my shell, like a turtle, and avoid as many outside commitments as possible. I have to- it's how I recharge. Since I'm trying to control my fibro by managing my lifestyle, with the goal of avoiding medications as much as possible, it's essential for me to manage my time well. That's only one component of my fibro management program but it's a big one and the most difficult. Try as one might, life gets messy now and again. Children wreck cars (she's OK but I had to drive her around until I could get her another one), appliances break, (luckily DH can usually fix them, but not always), appointments made ages ago come up on the schedule at the worst times, (dental appointments, check ups, etc.) and so on and so on. Just... life.

So, I hope my friends understand. I still love each and every one of you, I just have to take some time and refresh so I can get back at it. If I don't my fibro flares and I'm bed ridden; not very pleasant. I'll get there, I'll get there, it just takes me longer.

Busy Days and Fibro Flare Ups

I didn't join NaBloWriMo (National Blog Writers' Month) so I haven't posted daily. In fact, I haven't been posting much at all lately. I've noticed that with blogs, there seems to be a point where the writer gets burnt out. All of my favorite bloggers eventually slow down, stop posting as frequently, and even sometimes stop posting altogether. It makes me sad; it's like losing touch with a friend. And here I'm doing the same thing. (Not that I have more than a few readers, mainly relatives, but still.)

I get it, though. Life just gets too busy sometimes. The more you have to blog about, the less time you have to write it up. I've been through some really hectic weeks lately, so much so that I was getting worried about having a bad fibro flare up. I did have a couple of (thankfully short lived) flare ups and now I've got a really nasty cold. (Fevers, chills and sweats, body aches, coughing, coughing, coughing. Blech.) I knew I was over-doing it, I knew I was making myself vulnerable to getting sick, but I couldn't seem to say NO and cut back. There were so many important and valuable and enriching activities for my children, from helping with a friend's fund raiser for her wonderful non-profit to my daughter's 11th birthday, which she donated to a dog rescue organization. (Instead of presents, she asked for donations for the group.) Then there were the every day things on top of that, like driving around The Eldest, running Girl Scout meetings, getting The Wild Child to his tutor, among the many other things we do in a week. To top it all off, I started physical therapy for my shoulder impingement. (Which is helping, thank goodness.) Errands and a Thanksgiving vacation smooshed in between. All wonderful, but all TOO MUCH!!! Not good for a fibro patient at all.

And now I have a cold, and I have to slow down. I've canceled activities left and right, most of them things I was really looking forward to, but what can you do? Sometimes you can soldier through a cold, but this one came with a fever so not so much. Plus I don't want to infect anyone else; that wouldn't be very nice. Taking it easy for a few days is probably the best thing I can do both for the cold and the fibro. In fact, I'm not sure that I wasn't experiencing a fibro flare up yesterday when I had horrible body aches. I've found that when I don't walk regularly I get achy. Well, for obvious reasons, I haven't walked in a few days. It was either that or the fever or a combination of both that led to the aches, but whatever the cause it was miserable. I made sure to get out of the house today, as rotten as I was feeling, and walk for about 10 minutes and the body aches have mostly subsided. That's a really important lesson for fibro sufferers- if you don't move every day, things get worse. You have to be careful not to over-do it, but it's equally important not to under-do it as well.

Anyway, I'm under the influence of cold meds so I'm probably more rambly than usual, so I think I'll end here and go lay down for a while.

Updates; Thoughts on Fibromyalgia

We've been busy around here! Hopefully things are calming down a little bit, just in time for the holiday craziness to pick up. Here is a list of things that we've had done lately:

1. All of our windows and doors were replaced. This job started waaaaayyyy back in early summer and carried over to just last week, when the last adjustment was made to try to get the new front doors to close properly. The final inspection is complete, the final check has been written. We are energy efficient (satisfying one of my Earth Day resolutions) and hurricane resistant.

2. We have a new A/C, also upping our energy efficiency. This one was an emergency replacement; couldn't be worse timing. The final inspection is delayed a bit, but I think all of the work is done.

3. The leak in the roof over The Wild Child's bedroom has been repaired... again. Hopefully this time the repair will hold.

4. The Wild Child's bedroom has been completely ripped apart and made over. That involved moving him out (everything went in the living room), ripping out the ceiling, putting in a new ceiling, re-texturizing it, repainting the whole room, having the carpets cleaned, and moving him back in after sorting through all of his toys. (And the sorting process can take up an entire post of its own.) His room looks like the "AFTER" on one of those organizing shows. He's so proud of it now- he picked the wall color and his new ceiling fan, and decided where all of his furniture would go. He's got a new dresser since his old one was NOT "boy proof"; we found a modular one at Ikea that he's very happy with. It's a really cool room for a big kid.

*This was not a DIY project- we found a great contractor to do the construction, thanks to our next door neighbors. We did the moving in and out!! DH installed the ceiling fan and put together the modular dresser units. I sorted through the mountain of toys and put the ones he kept back in the room. DH and I both went to Goodwill to drop off the toys he's outgrown/doesn't need. (And it's embarrassing how much there was.)

5. Since the carpet cleaners were here, we had them clean our room too. While they were cleaning our room, the guy said we should have the carpet stretched and he knew a guy...

6. So we had our carpet stretched. You have to move even more out for a stretching than for a cleaning, so our living room held all of The Wild Child's things plus a good chunk of my things for quite a while. (The carpet is still old and even the professional cleaning didn't get out all of the stains, but it looks a LOT better.)

7. And then we put the house back together again.

Whew!

I'm so thankful all of this happened after my dad got out of the hospital, where I was visiting him almost daily over the summer, and into a rehab facility. He's still there; my brother filled me in yesterday since I haven't been able to visit him lately. He had some damage to his spine from all that happened and his legs are partially paralyzed. I don't know what his chances are for recovery or for walking again, or living on his own. Time will tell. What I do know is that I haven't been down to see him in some time and I feel awful about it, and so thankful for my amazing brother who is handling all of this on his own.

As for everything else, we keep perking along. Girl Scout, 4H, and homeschooling group meetings, piano lessons and tutors. Homeschooling lessons. Our two new dogs to take care of. Doctor's visits and grocery runs. Driving The Eldest around to her classes. (She's driving to her local classes; I'm still taking her to two night classes that are further away.) I've also started physical therapy for my bum shoulder; hopefully it will resolve quickly.

With the fibromyalgia it all gets to be overwhelming, but it's a good life. I wish I had the energy to do more, but it is what it is. I think I manage pretty well considering. Sometimes I shut down; sometimes my brain shuts down for me. When I get overwhelmed I tend to forget things, appointments and so forth, and I think it's my subconscious taking over and saying SLOW DOWN!! The "fibro fog" takes over too; I get spacey, have trouble articulating my thoughts, and when it's really bad I feel dulled down. I think that's the worst part of fibro for me, the fog. Did you know researchers found that there is an actual loss of gray matter in the brains of fibro patients? That's scary. That's also why I take a few minutes out of almost every day to do my "brain exercises". Don't know if it's helping, but it can't hurt, and it's fun. Sudoku and concentration games, trivia quizzes, and jigsaw puzzles. (I have the links listed over there on the right for you if you want to give any of them a try.) Physical therapy for my brain.

I wish someone would come up with a comprehensive program for fibromyalgia. If I could design an intervention, it would include an exercise program tailored to the individual that consists of gentle cardio and strength training, cognitive therapy like my brain exercises, (although there are better programs out there than I can find for free on-line), stress/time management, organizational skills training, relaxation therapy, a nutrition program, and, oh, throw in a life coach or something. I've done a lot on my own but there's a lot of room for improvement. On the positive side, I walk almost daily (cardio) and I try to eat healthfully and maintain my weight. I do those brain exercises. Where I'm falling short and could use guidance- weight training, relaxation therapy, stress/schedule management, and organizational skills. (Although I can be organized when I put my mind to it, it just doesn't come naturally for me.)

Of course, this won't happen. No room for drugs in a program like this, and that's where the money is. Sigh. But now I'm tired and tomorrow is a busy day, so I'm off to bed so I can get some sleep therapy!!

Hospital Mode

Once again, I find myself with a loved one in very bad shape in a hospital ICU unit. This time it's my dad. He suffered an aortic aneurysm, something not many people survive, on July 1. My brother and I have pieced together what happened that got him to the hospital, and it appears he was at his primary care provider's office, someone there realized he was in bad shape, and they called an ambulance to rush him to a nearby hospital where he had emergency surgery. He's been heavily sedated since then and we haven't been able to talk with him. We've talked TO him and he's been able to nod yes and no every once in a while, but he's pretty much out of it. He's been in a lot of pain even with the medication. He's had complications from the blood clots and the surgery that include acute renal failure, liver problems, and fluid around his lungs. His feet have also been affected by compromised blood flow to the point that they were talking about amputation. His feet at least seem to be somewhat better at this point so I don't think they will want to amputate anything after all, thank goodness. Now the rest of him needs to recover!

Dealing with all of this is so stressful. My uncle came down for a week but had to fly back home so it's basically my brother and I dealing with everything. My brother is closer to the hospital so he's borne the brunt of it all, but I'm doing what I can. I've been to the hospital (a 45 minute drive each way) every day except for the day of The Wild Child's birthday party. I've had loved ones in ICU before but there was always another generation ahead of me and lots of other adult relatives to help with all that needs to be done. I learned a lot from going through those situations though, even if I wasn't the primary decision maker. This time it's just the two of us. My brother is young (I am 17 years older than he is) and hasn't been through anything like this before (to my knowledge) but he grew up with my dad so I told him he has the ulitimate say in what happens. I didn't start spending time with my dad until I was 18. Of course I want to be consulted and have input, he's still my dad too, but I will defer to my brother if we disagree. That led to some problems for me- I wasn't strong enough in insisting on keeping informed and letting the doctors know that they do need to talk to me as well as my brother. The ultimate decision may be his but I do want a say and I absolutely have to be informed of all that is going on. I expressed that to the nurse and the nursing supervisor today and I think they heard me, so we'll see.

Aside from that, I'm in hospital mode. That means keeping a hospital bag ready to go every day that holds my Kindle and other reading material, my "to do" notepad, a cushion for those hard hospital chairs, some water, a snack or two, and my charger. (Works for both the phone and the Kindle.) Sometimes I'll take a light jacket but this hospital isn't chilly so I don't need it this time around. I also take my cane seat thingy since they are a little stingy with the chairs in the ICU. (Although I asked and the nurse got me a recliner today- a joyous thing since I was able to nap for a few minutes, and boy, did I need it!) If there is a regular chair available I can use the cane seat thingy as a foot rest. When you've got fibromyalgia it's kind of essential to find a way to get comfortable. The other days I've stayed for long periods of time have been really difficult when I only had a regular chair, or no chair. Plus the driving itself is hard; for some reason a lot of driving really makes me ache.

But I'm coping. DH is helping out by taking over everything at home. He also walks with me to keep up my exercise routine. (A 30 minute walk most days.) It's super important that I keep walking; it helps with stress relief. My stomach is starting to act up from the stress so I know I need those walks! (It's the IBS, which tends to go along with fibromyalgia for many, many fibro patients.) When I realize I'm feeling stressed out I try to remember to breathe deeply and relax. I think I need yoga or something, or maybe I should go back to the acupuncturist. (Oh, if only I had time!) Right now though, I'm going to bed. Sleep is the best stress relief of all.

Updates

Gardening:
Our gardening project is going well! For the first time ever, I have tomatoes. I've tried repeatedly to grow tomatoes in the past but was never successful. I'd get one or two bug eaten tomatoes out of a plant before it died in ignominy; it was truly sad. For some reason, my losing streak has ended and we have tomatoes coming out our ears!

Actually, I think the biggest reason is I got the baby tomato plants from friends instead of Home Depot. They are also in a different location in our yard where they are getting more sun and I put compost in the soil when I was prepping the planting bed. The plants are HUGE and yielding more tomatoes than we can eat! We have some spiders out there too who are eating the bad buggies, much to the children's chagrin. (They HATE the spiders, even when I remind them they are probably protecting our tomatoes.)

We also got some beans from plants The Wild Child and Martha Jr. planted but never enough to rely on them alone for a side dish. We planted some seeds from a lettuce mix packet but the plants from that were too bitter and we finally pulled them all up. We put some strawberries in the upside down planter but they went in too late, plus they were the Home Depot variety so I'm not expecting much.

DH made me a worm bin for Valentine's Day but we haven't started using it yet. No worms; I need to get by a bait shop. (The kids are keeping an eye out for worms in our yard but no luck yet.)

Food:
DH and I are still sticking with a vegetarian diet. We eat eggs occasionally. We eat vegetarian cheese (as opposed to cheese made with rennet, which is NOT vegetarian) quite often and small amounts of butter now and again. We hardly ever drink milk. (I still use it in recipes on occasion, and I wouldn't turn down hot chocolate during cold weather.) I still avoid soy like the plague, but I miss recipes using soy sauce- stir fries and some raw recipes and so forth. I also miss the bread products I've had to give up that contain soy, like the whole wheat bread I used to get at the grocery store bakery.

The kids are perking along, dietarily speaking. The Eldest occasionally indulges in shrimp burritos but is otherwise vegetarian. I buy cold cuts from Whole Foods for The Wild Child (or he gets all peaked and cranky) every now and again; sometimes Martha Jr. will eat some of the cold cuts too, sometimes not. She's mainly veg except for that and eats the healthiest of the three overall. The Wild Child continues to be my biggest challenge. I have to feed the boy, but he won't eat much of anything healthy. As an example, if we have a pasta dish for dinner he'll skip the delicious sauce with veggies, beans, tomato sauce, etc. and put barbecue sauce directly on the pasta and eat only that. If we make whole wheat pasta he cries and won't eat anything. What do you do in that situation? He's gotta eat. Sigh.

Weight:
I've gained another couple of pounds but I'm fighting it. I know where I've gone wrong. I stopped measuring my carbs and I give in to grazing during dinner prep. If I can get that under control I'd get back down to where I want to be, so that's my short term goal- get out the measuring cups for pasta and rice, stop buying those darn tortilla chips (a MAJOR "red light" food), and control bread portions. (As in one slice, not 3.) To try to control my tendency to graze when I cook I made some hummus (from a mix from the Whole Foods bulk bins, which is super quick and easy) so I can dip carrot sticks and cucumber circles. That helps when I actually follow through!!

Fibromyalgia:
I'm still having a hard time with fibromyalgia but things are getting easier as my schedule calms down a bit. The Eldest found a ride part of the way home on two nights a week; YEAH!!! I still have to go get her, but it's a 20 minute round trip instead of an hour or more, which makes a big difference. We've had insane weekends with major Girl Scout field trips but that's calming down as well; no field trips in the immediate future. Don't get me wrong, I LOVE Girl Scout field trips, they are just very tiring. I'm hoping we'll be able to start attending our home schooling group meetings again; I had to cut them out since I was so overwhelmed, especially by the end of the week (they meet on Fridays) but the kids miss their friends and I miss the other moms!! I've been sleeping well which is always an important component in keeping fibro under control. I'm still walking almost daily, which is important as well. When it comes to exercise balance is everything; just enough so I don't get "rusty", which makes things worse, and not too much so I don't get sore. (Since it takes FOREVER to get better when I get sore.) I collapse in bed for an hour or two when I get done with my walks, but I stick with it.

The key word to managing the fibro is that balance thing; it's an absolute necessity. I have to balance my schedule, exercise, sleep needs, weight, everything. I so need to take up meditation! (Which is supposed to help balance stress, or something.) If I can keep balance in my life, I can keep the fibro under control for the most part.

Strawberries:
I try to take the kids on a road trip to pick strawberries at least once a year. I had a date set up to go this year with some friends but the fields were closed that day so we haven't been at all yet. :( I've wanted to try again since then but there was just no way to get the free time! I am hopeful we'll be able to go next week. The Eldest will be on spring break so I won't have to worry about picking her up so there are 3 possible days. If I get to go, I'll post strawberry pictures!

Bleh...

I'm not blogging! I'm in a slump. My fibro is flaring a lot lately since I can't schedule my regular "home days" the way I need to. I spend my time driving The Eldest around to her classes 4 days a week, which is super draining, and something is always coming up for the other days, including weekends, so I'm constantly on the go. I'm feeling swamped. It'll pass, though. Her current schedule will change at the end of the semester, and even better, she'll be driving herself around as of this summer. (WHEW!) Girl Scout cookie season has passed so no more cookie booths until next year. We have a lot of field trips coming up, including an over night, between now and the end of the month, but next month is looking a little easier.

When my schedule gets out of control like this I get flare ups; it's just part of it. I muddle through the best I can and look for the light at the end of the tunnel. It's not a permanent state of affairs; things will settle down. I'm so fortunate that I typically have more control over my schedule and the craziness is temporary. I hate feeling like I'm whining about things; that's not what I'm trying to do here. I want to explain so that anyone reading will have a better understanding of fibro.

I have a dear friend who is suffering with fibro-like symptoms. She's asked me about it, what it feels like for me and how I cope. It's draining, mainly. Although I try to not let it limit me, I do tire more easily than a healthy person should which is really frustrating. If I had to work full time for a paycheck it would probably do me in; I know I'd spend every second of time off trying to recover with no time to LIVE, so I'm thankful it's not an issue for me. I have sleep issues off and on. I have memory problems and "fibro fog" where I can't think clearly sometimes, especially when I am in a noisy or stressful situation or if I'm tired. As for pain/discomfort, I get sore like I did before I had fibro symptoms but now I don't recover for what feels like ages. Really bad flare ups feel like the body aches you get with the flu. I don't seem to have the classic tender points, although the rheumatologist disagreed when she diagnosed me. My back acts up, especially when I'm on my feet a lot and can't get horizontal a few times during the day.

As for coping, I am so fortunate that I have a fairly mild case and I can mostly keep it under control by living as healthfully as possible, eating right, watching my weight, making time to sleep as much as my body will let me, taking my walks every day, and not over doing things. Balance is really important. (I should take up meditation and yoga; they would probably both help.) When I have a big event to attend that will involve a lot of standing or walking I take my cane/seat thingy, which is a life saver. It got me through my trip to Europe and a lot of other places since then! The only medication I take is a daily Aleve to control inflammation. I've been to an acupuncturist. I can't say enough about how wonderful those little needles are for the muscle aches! (The only problem was the drive over to the office; that got to be tough to work in once The Eldest's classes started. It was one more thing on my schedule!) The kids help out. The Middle Child loves to cook so she'll frequently make dinner for us. DH is my knight in shining armor; he comes to my rescue all the time. His cuddles are my best sleep aid, and that's just for starters. I'm also letting things go like keeping up with housework. I still have our Christmas decorations sitting out in the living room, but I'll get them put away eventually. It's a little embarrassing when I have people over but I can't stress about it. When I'm flaring it's survival mode- only the essentials are taken care of. I'll get through it and deal with the fall out when I'm feeling better. In the meantime, I take as much down time as I can steal away from my crazy schedule and spend a lot of time reading! My silver lining- if I have to hit the bed more often than I'd like, at least I can have the pleasure of books while I'm trying to recover.

Why Did I Post That??

Sometimes I post stuff then go wait, why did I do that? My last post about fibromyalgia is one of those. I'm not sure why I wrote that, to be honest. I'm not looking for pity, that's for sure. I know I was frustrated when I was writing since it was such a bad day and I needed to vent, so I guess that's part of it. Today was better. I had more energy; I didn't have that walking under water feeling, either.

I have a lot of good things going for me in regards to having fibro. I'm lucky I don't have to generate an income for my family since DH makes enough to support us. I don't know that I would be able to function if I had to work full time again; I would have nothing left for enjoying life, but luckily that's not an issue. I can set my own schedule and take it easy when I need to, although I tend to over do things and get myself in a pickle with commitments every now and again. We have good insurance that is covering things like acupuncture and any doctor visits I feel I need. I don't have fibro as badly as some people do. There are people out there who are bed ridden with it; I have a mild case in comparison. It's not a progressive illness, so as bad as it is now is as bad as it will ever get. I have a lot more good days than bad ones. The flare ups can get really bad, but they are usually over in a day or two. Most importantly, I have DH. He doesn't always get it when I'm hurting, but when he does he gets it right. He doesn't hover or make me feel like he's pitying me at all, he's supportive, and he does more than his fair share to keep our household running. I feel guilty when he works a full day then comes home to no dinner and dishes piled high in the sink, but he's great about it. (OK, he gets cranky every now and again, but he's human; he's entitled. Then he cooks the meal and throws the dishes in the dishwasher, saving the day like the knight in shining armor that he is.)

I don't let the fibro stop me from living my life. I took The Eldest to Europe last year. I go camping with my Girl Scouts. I exercise. I sign up for things. I didn't miss a single day of the classes I took recently. Basically, I live by the hold-your-nose-and-jump-in philosophy. I plan things, and if I'm having a bad day when those things roll around, I deal with it. It's manageable. It's not fun, but it's manageable, and it's not stopping me.

What Fibro Feels Like

Most of the time I don't believe my diagnosis of fibromyalgia. I don't have the typical tender points and I can function pretty well if I keep my schedule from getting too crazy. I'm always a little sore somewhere but normally it's nothing I can't handle. Then there are days when I have flare ups. Those are not good days. Those are days full of frustration that I can't do what I want to do because I feel so darn lousy. It's like the day after the worst day of the flu. You're on the mend but you still feel wrung out, still sore and achy, still tired. The frustrating part is I still want to DO things. I WANT to get out of bed and get on with my life, work on my latest project (I always have one project or another going on) or do something fun with the kids, but I can't. I can push through it when I have to but it is so draining, like when you try to walk fast in a pool with the water up to your shoulders. It's like there's a resistance pushing against you; movement is harder than it should be.

And then there's the "fibro fog", which can hit at any time, flare up or not. That's really frustrating. I am usually pretty sharp, but when I get THE FOG, I'm anything but sharp. Dull as a spoon is more like it. I forget things. If I have something important in my hand I might get distracted and put it down without realizing it and forget where I've put it. I've lost some really important papers that way. I get names wrong. I know lots of people do that too, but I manage to do it in spectacular style! As an example, I spent a weekend on a team with a woman I went to Girl Scout Basic Camp Training with. We worked side by side, we participated in a meaningful ceremony together, we sang silly camp songs together, and took pictures together. I KNEW her name as well as my own. I got back and attended an event with this woman and introduced her as someone else on our team and didn't realize it until about a week afterward. (It woke me up in the middle of the night- did I? OMG, YES I DID!!! SHE MUST THINK I AM THE WORLD'S BIGGEST IDIOT!!!) I blame the fibro fog. Yes, it can be that bad. Fog is a very accurate description of how it feels, too. It's like my thinking is clouded over. I hate it.

But on the up side, I don't have fibromyalgia as bad as some people do. I'm not taking any prescription medication for it although I take an Aleve every day. (Which I also take for arthritis.) I'm trying to manage by changing my lifestyle with the weight loss, regular exercise, (although I come home and I'm bed ridden for two hours after my daily walk, but I still do it), and eating properly. I try to get enough sleep but sometimes my body doesn't cooperate. That's the hardest time for me, when I'm in a not-sleeping-well cycle, but I know it is just a cycle and if I don't freak out about it I'll get through it and get back to sleeping well. I'm also trying acupuncture since I met an acupuncturist through my book club. She's away on a long trip right now so I can't see her for this flare up, but things were going well prior to her leaving. I'm experimenting with herbal supplements. Melatonin did NOT work for me. A doctor I worked with once recommended it for a patient as a very mild sleep aid so I figured what the heck. I tried it last week and took a pill before bed one night. I didn't sleep AT ALL that night and not much the next night either- from ONE pill! I don't know if it was the pill's fault that I was unable to sleep; maybe I just got myself so excited that it would be the answer to my sleep problems that I counteracted any good it could have done. (It is supposed to be mild, after all.)

I hate talking about the fibro most of the time. I don't want it to be a big deal, but sometimes it is. Mostly it isn't. It's just that I don't know when it will be a big deal and when I can live like everyone else and forget about it.

Some Days Are Like That...

Even in Australia...

Quick, name that book! (I'm quoting a children's favorite.)

So today wasn't the best of days. I've over done things recently and the fibromyalgia is flaring up, to the point that I was shaky earlier in the day. It was hard to get things done and I had a Brownie meeting and soccer practice to deal with. That doesn't sound so bad on the surface, but there's all the cleaning up and preparation for the Brownie meeting (I rarely have time to prep ahead so I'm scrambling on the day of) then the hassle of getting The Youngest dressed and out the door for practice, and if you have a kid in any kind of activity that requires special gear you know what I mean! Theoretically he's supposed to put his soccer shoes, shin guards, and ball in his soccer bag as soon as he gets home from a game or practice. In reality? Doesn't happen. Shoes and shin guards were buried in the pit that is his room and he wasn't so interested in finding them. The consequence was he either found them and could go to practice, or he had to spend the time all the way up until practice was over cleaning his room. This is a child who needs constant supervision and micro-management in order to get him to do ANYTHING, and I'm already running on E, but micro-manage I did. I sat on a little chair in the doorway and pointed to dirty clothes on the floor, a huge component of the mess, that he had to pick up and put in the hamper. As expected, he finally cleaned up enough that the floor was peeking through in spots, and the shoes and shin guards were found. I keep his socks in MY sock drawer so I knew where those were, and he was already wearing shorts and a T-shirt, so we were finally, 20 minutes late, out the door. Blech.

I usually try to take my daily walk while The Youngest practices; I thought it would be best to skip it today! I sat and worked on a menu plan and grocery list for the rest of the week instead, which I won't post this week. (It's all a bunch of repeat stuff anyway, and nothing exciting.) After stopping by the grocery store, we headed home where there is a visiting puppy. The Niece and the friend she drove down with (they arrived this morning) found an abandoned puppy at a rest stop on the way down. She's cute as a button and looks kind of like a lab to me. The Niece says she thinks the puppy is around 2 months old; looks about right, I suppose. The kids are all, of course, head over heels in love with the dog. NO, we can NOT have a dog! I can barely keep up with cleaning up after the lot of them as it is! Plus there's the sleep thing. I have sleep issues with the fibromyalgia; I have a lot of problems when my sleep is interrupted, and a dog will bark and need to go out, among other things, which all has the potential to disrupt sleep. I just can't do it! She's so darn cute, though. Those big puppy eyes, and that lumbering puppy gait...she was chasing things in the back yard today and it was melt your heart adorable. Sigh.

Anyway, this one is going home with The Niece's friend at the end of the week, so it's a moot point! (Whew.) ;)

PS: The quoted children's book is Alexander and the Terrible, Horrible, No Good Very Bad Day

Coping with Fibromyalgia

Sometimes fibromyalgia (FM) flares up. Sometimes it's when I let my schedule get away from me (as I have been doing a lot lately) and sometimes it just happens. I've been doing a lot better now that I've lost weight and I'm walking daily, but I still have days... The walking would seem like it would add to the problem but it's all about balance. If I walk too much or not enough, I get more flare ups. I've found around 30 minutes a day is just about right for me.

I was hoping my schedule would be more manageable now that the holidays are over but such is not to be; sigh. I love everything I take on so it's frustrating to know that it's really too much for me; I want to be able to do more. I'm just so thankful for my DH; he earns enough so that I don't have to work outside our home. A paying job on top of trying to raise the kids and run the house? I'd be exhausted all the time. I'd be lost; I don't think there would be much left of ME. I know there are people out there with FM who do work at paying jobs, but I don't see how they do it. My aunt told me about a fellow teacher she knew with FM. She would collapse on a couch in her classroom every day before she even had the strength to drive home. That's really bad.

Flare ups feel awful. When I get a bad one it's like having the flu. The worst of the flu is over but you're still sick; your body is weak and achy and you just don't want to get up out of bed. I feel drained and I don't want to do anything. Sometimes getting up and moving around helps; sometimes it doesn't. Those days are so hard because I still have my life to lead! If I'm lucky enough to have a "home day" when I get a flare up I try to at least make the best of it. I'll work on stuff while I'm laying down- looking through recipe books and making menu plans and grocery lists, updating my "to do" lists, journaling, and other quiet things. Sometimes one or more of the kids will come and cuddle with me and we can talk or watch an educational show I've recorded on the TV, which is the best way to spend that down time! I tend to "turtle" when I'm having bad days or feeling overwhelmed, too. I withdraw into the shell of my home and avoid the outside world as much as possible. I don't call anybody and pull back from as much as I can, including my friends, which isn't fair to them but it's a survival mechanism. I have to pull back in order to recharge and get through it! Fortunately I don't have the really bad flare ups too often. Sometimes I get mild flare ups, which are draining, too, and those cause me to pull back as well. I never know how long a flare up will last, either; sometimes it's just bad at the end of the day, sometimes it's all day for several days, sometimes it's off and on for a period of time.

Managing my schedule is a big part of managing FM. I tell my kids I have "energy units" and when I run out of units I'm done, so they have to help me conserve them for the important things. I let my schedule get out of control this past week, though. I try to keep a couple of home days each week for recovery purposes but I only had Thursday this time, and all of the other days were full of busy activities. We did so much, but other than my sore legs from picking strawberries I actually feel OK today. :) Yesterday I took the kids to a park to meet up with some old friends I pulled back from several years ago, which was wonderful, and we made plans to get together once a month. I mean I really pulled back from them, more than I wanted to, but I didn't realize at the time that we would lose touch for so long the way we did. They are all ladies from the homeschooling support group I was involved in when The Eldest was younger, probably for 4 years or so until The Youngest came along. I hauled The Middle Child to The Eldest's meetings and activities and managed OK when The Middle Child was a baby, but then trying to do the same with The Youngest AND The Middle Child was too much so we dropped out of the group. In the meantime the group fell apart and everyone went their separate ways. Since most of us still live in the area one of the former members decided we should have a reunion yesterday, which is why we all met at the park. It was so great to see them! Now we mamas are going to get together WITHOUT THE KIDS once a month, which I'm really looking forward to. :) The kids have grown so much, too; it was fun to see them all. The Eldest reconnected with one of the girls she was friends with when she was little and realized they have a lot in common since they are both artists, so they sat around drawing and talking the whole time we were there. It was a good day. :)