Saying Good Bye to Mommy Regrets

        Every parent feels hassled these days. PTA meetings, soccer practice, cub scouts, double ear infections, homework, and the list goes on and on. It's so hard not to succumb to the every day stress of simply living your life.

      As a parent with chronic illness, the challenge is even harder. I have to accomplish things AND do it in such a way that I'm not desperately over tired the next day, so I can get up and do it all AGAIN. It's hard some times. I am however, proud to say, that I have hauled myself out of bed and gotten Doug to school everyday he needed to go. He has never missed a day of school due to my illness. It may not seem like a big deal to some people, but some days the personal sacrifice is huge.

     And that's why I'm cutting myself some slack. Back in September, when my endometriosis pain started becoming so bad that it was painful to walk, I decided that I would 'treat myself' and drive to school rather than walk in the mornings. I have also decided I will pick him up in the car when it rains as the logistics of walking a toddler to school, in the rain, are insane. We have bought a huge box of chicken pot pies from Costco to have on nights when I'm not up to making dinner. We also have frozen pasta for the same reason. Today, I decided to treat myself to the five dollar surcharge and pick up my groceries at the store instead of shopping for them in the rain. Good use of five dollars and it will save me quite a bit of energy and precious time.

     Letting go of things you haven't accomplished is difficult. I had bought some crafts for Doug and I to do over the holidays, but due to a long, awful, migraine cluster, they didn't happen. I also bought lots of dry ingredients for cookies I never baked. Instead of feeling anxious about these things, I've decided to just let it go. No point dwelling on what cannot be changed. My energy is better spent else where for sure.

   So I think in 2017, I'm going to give myself more license to cut myself some slack. Let the clean laundry sit in the hallway for a day. Let the kitchen floor go longer between moppings. Stock the freezer with meals to make for when I'm unable to. So cut yourself some slack too! Have a glass of wine and watch some tv on the couch tonight instead of paying the bills.

Shifting Gears

So I've been in a nasty flare up, since June. For whatever reason, my endometriosis has been pissing everything off in my pelvis. It makes it difficult and uncomfortable to sleep, so naturally that leads to a flare up of my fibromyalgia. Now there's pain from my fibro, which also makes it difficult to sleep, which leads to... more pain. It's a nasty cycle, and because of my endo involvement, I'm having a hell of a time breaking out of it. Even my physical therapist and neurologist are getting frustrated by this.

I've been in denial, somewhat, about the length and severity of this flare up. I finally realized the other day that so many of my recent daily frustrations stem from the fact that I'm trying to live like I'm NOT in a flare up. So I realized that I need to retool things, down shift to help me get through this. I know that there have been relationships I've been neglecting, and it hasn't been personal, it's been an attempt to save my energy for other things. And unfortunately, there's going to be a lot more of that for the time being.

The good news is that I feel like I have finally reached the bottom of the pit of despair, which means there's only one direction left to go, up! This past weekend was difficult. I had a treatment in the doctor's office on Friday which at first seemed promising, but then seems to have failed. I was also given an increased dosage of one of my medications, which the cost of is now astronomical. I can afford it, but I choose not to spend an absurd amount of money on it (what I had been paying for a three month supply is now the cost of only one month). Luckily, Jeff realized that I was stuck in this pit and threw down a ladder and climbed in after me. I think I'm going to be able to make it out, again. Because that's what you do when you live with chronic illness, you keep climbing out of the same pit, over and over gain, because you have to.

Self care is important, be well!

The Quiet Time Bag

          Four o'clock in the afternoon seems to be the witching hour around here. Luke is usually down for a nap. Doug and I have typically just finished his homework. I am usually exhausted by this point in the day, but need to start making dinner soon. And Doug is usually full of energy and wants to yell and run around the house. In case you don't live in the DC metro, we've had over two consecutive weeks of rain, so throwing Doug into the yard hasn't been an option much. I ended up losing what little control I had left with Doug by this point in the afternoon. After several days of this, I thought to myself, "I can do better. WE can do better." I just needed for inspiration to strike, and it did.

                                                

    I give you: The Quiet Time Bag. It. Is. Awesome. I'm really not over selling it. I found some things that Doug can do QUIETLY, in his room, for about half an hour. Thirty minutes is enough time that I can regroup, take a brief break, and start dinner. Jeff typically walks in the door not too long after, which is a huge help.
Anyway, in the bag we have a note, Colorforms, secret market reveal pads, sticker books, Spirograph, coloring pages, blank pages bound together in a binder (he loves this, for some reason). Doug loves the bag. He will ask for it all the time. I try to limit its use to those afternoon times and Saturday mornings. We already had some of those things (paper, Colorforms) and some I bought in the dollarish section of Target. I save some things to put in later and plan to rotate things in and out so Doug doesn't get bored.

The note I included:

 

I also made a sign to put up by the baby gate. You can see what Doug thought of it:


 

So far, I'm pretty happy with how the Quiet Time Bag is working out. I 'll have to keep it interesting to keep his attention, but I'm happy he's doing something creative. And most importantly, I'm glad he can be quiet and I don't have to yell.

Stump the Doctor

Every few years it seems like my body likes to play a good game of 'Stump the Doctor'. I will present with a handful of symptoms, some of which can be neatly attributed to a specific diagnosis. I will also have a few other symptoms that don't quite fit and I'll also be missing a few factors that doctors deem key for a diagnosis of that particular condition. And I'll go from doctor to doctor, seeking answers and getting none, all the while suffering from an untreated condition.

 My all time favorite remains a diagnosis of possible gout from a previous primary doctor. She heard me say that my legs, among other things, hurt. She could find nothing else wrong and would not entertain my notion that it was in fact, fibromyalgia. I eventually found a doctor who also believed it was fibro and got treatment for it. But it was a long painful time. It's hard to be sick and suffering through an illness and then, on top of it, have doctors unable or unwilling to explore options. Now I get a kick out of the whole gout debacle. When I have an odd pain, I'll tell Jeff that it must be gout. "This feels like an ear infection, but it's probably gout of the ear.".

Well, it seemed lately that I'd developed uterine gout.* It started at least before January, but I specifically remember in January going to see my ob gyn about it. It's a large practice and I like most of the doctors, so I was comfortable seeing anyone there. I went in and complained that it had been six months since we started trying to get pregnant. I know, I know, they need at least a year before they'll do anything, but we got pregnant right away with Doug. I was scared to wash our clothes together after he was born. Anyway, mid cycle I was having some stabbing, aching pains. And please, I know all about Mittelschmerz** (mid cycle pain some women experience during ovulation, lasting at MOST two days). It was dismissed as normal and we were sent on our merry way. I went back to see another ob sometime that Spring, complaining of the same thing, except now the pain was lasting four days. I got another pat on the head and everything is fine.

So in July we came up against the magical one year of trying to conceive deadline. I went back to my ob and explained the situation and the pain again, which was still growing. I was having a LOT of pain mid-cycle and certain activities produced pain and I was having the same, dull ache and stabbing feeling on my period now too. My doctor sent me to a local (large) fertility clinic to get sorted out. We were hopeful that at last we'd get to the bottom of this.

The clinic, before talking to us, before doing any tests or looking at the MOUNDS of personal health histories we filled out, told us that our options were either IUI or IVF. We were a bit confused. We thought they would diagnose and FIX the fertility issue, not simply overcome it. It was somewhat like being told your house was going to have to be burned down to kill a small infestation of mice. Anyway, they couldn't find anything wrong with me and weren't willing to look into the now horrible pain I was having every month. It was a rather disappointing waste of time, but at least we didn't get $20k into it before finding out it wouldn't work. We're extremely blessed to have Doug, and we're ok if we end up being a family of three. So we weren't super interested in going that route.

I went back to my obgyn's office a total of three more times, seeing three more doctors trying to get to the bottom of the pain. One finally ordered a more detailed ultrasound to be done while I was in pain. It didn't show anything. The only thing the doctor could come up with is that the mid-cycle pain is setting off some inflammation and I'm sensitive to that. That doesn't explain why it gets progressively worse each month. The last time I went back, I ended up going on the pill. The doctor couldn't think of anything else to do for me. The pain was lasting nine days now, and my cycles were getting shorter, 25 days. I needed a breather from the pain and I just wanted to get through the holidays at this point. So, despite the fact that we're trying to get pregnant, I'm on the pill for the next three months.

Today I finally met a doctor who believed me when I said something was very wrong, and confirmed my suspicions. It seems likely that I have endometriosis. We won't know for sure unless a surgery is done to confirm it. Endometriosis doesn't show up on any scans. Some women with just a little bit of endo have extreme pain, while other with tons of endo have little to no pain. My symptoms didn't suggest 'classic endometriosis' as my doctors have been telling me. Unfortunately, their expertise is limited to pap smears, birthing babies, normal pregnancies and writing scripts for the pill. So I finally found a doctor who has expertise in dealing with endo and other disorders.

 It was such a sweet relief to have a doctor take me seriously. Right now the plan is to stay on the pill for a few months and then come off of it and see what happens. It's a possibility that I may have surgery in the spring. We'll just have to wait and see.

But it's so nice now to have a doctor on my side and to know I have options and to get a better grasp on what I'm up against!

It's also a comfort to know there are so many ladies out there with endometriosis. I've met a few in the past few months, and it's always nice to know you're not alone.

And thank you to everyone who has been supportive of me during this time, Jeff, Bridget, and my Mom who has watched Doug for about a 100 hours while I went to the doctors.

For a while, I contemplated taking in a show and tell of what my uterus felt like when I was in pain. Initially, I envisioned a grape fruit and my largest knitting needles. I decided though, that play doh and toothpicks were less messy. 

                           





*No, I don't think that's a real thing. And I don't want to know if it is. I'm not trying to belittle gout either.  I know it's a painful and horrible condition. I just think it's hilarious my doctor was so off target. You have to find some things funny or else you'll never get through them.

**I think more weird pains need to be given German names. I don't think people would make fun of PMS if it had a German sounding "I WILL KICK YOUR BUTT" name. Seriously. Mittelschmerz sounds like pain on steroids.

Ebb & Flow

The past eight or nine months of being off of my fibromyalgia medications has been a learning experience. I'm still feeling around for my limits of pain and fatigue and unfortunately, that changes throughout the month making things more complicated than need be. Don't get me wrong, there are definitely good reasons for me to be off my medication. Overall, I'm less fatigued than I had been. I've had a decrease of other side effects as well. It has just taken me a long time to get to know my fibro in this new situation.

Every so often, I go through this internal struggle with my illness. I begin to wonder if I do actually need to limit my activities because of the fibro. I wonder if it's actually the illness that is limiting or it's my own perception of the illness. Basically I wonder, am I lazy or am I sick? And so then I go and do something not really wise.

Last week, I skipped my crash day. It had been a really busy weekend and I rested a bit that Monday, but I thought that Tuesday I could just get up and get on with the things I'd like to do that day. That Tuesday I was fine. Unfortunately, that Wednesday, Jeff's car became compromised and it was old enough and broken enough that it was better to replace it than fix it. Which led to one very long day at a car dealership buying a car and then another long afternoon the next day bringing in our old car to trade in. Basically, I probably would have been okay that week, if not for the emergency. But this week I'm still trying to pick myself back up after a rather long last week, and I wonder how things would have turned out if I'd taken my day to rest.

So that's sort of where my mind set has been the past several weeks. I am tired. I do rationally know that it's due to being ill, but it's still difficult to really wrap my head around that. I am excited and a bit nervous about some new responsibilities and activities I've taken on and will be taking on. Some of them will be short term and other a bit long term. I love being able to get out of the house and interact with other people. I miss trouble shooting, and I'm definitely getting the ability to do it now!

So for now I've decided I'm going to be cautious, but still try new things. Push my limits a bit here and there. Just keep swimming!

I'm a Monster

I've been microwaving this adorable bear. The bear looks kind of depressed sitting on the plate there. I found these bears around Christmas. You can nuke the bears and they have corn in them which gives off a nice moist heat for aches. I bought one for a friend of mine and I thought about buying one for myself, but at the time, I decided I wouldn't really need it.

Anyway, this is my first winter since my fibromyalgia diagnosis that I have not been taking medication for it. I didn't really think anything of it, but apparently the colder temperatures mean that I ache much more than usual. After several night of hauling the heating pad into bed with me, I gave in and purchased one of these delightful bears.

Doug was very excited when he saw the Amazon box on our porch the other day. The last time we got a package, it had Beta Bet in it, so he was hopeful for another fun thing. I made the mistake of telling him there was a bear in the box. We opened it and Doug claimed the bear for himself. I told him that he could play with it, but that it was mine. I told him that it was a special bear that I could put it in the microwave and it would help me feel better. That just freaked Doug out, "NOOOO DON'T MICROWAVE THE BEAR!!!".  So alas, I feel like a horrible person every time I nuke it. Well, I feel horrible until I put the bear on my shoulder, then I feel much better.

New Year

Happy New Year everyone!

I like the new year. It feels fresh and full of promise.  This year I'll turn 30, in a few weeks, in fact. I'm not sure yet how I feel about that. I've been telling my husband that I've lived most of my adult life in my 20s (think about that, it's TRUE) so being 30, is.... different. Probably not bad different but just different. Jeff will be 33 this year, so he's already done the '30 thing'. My biggest apprehension about getting older has to do with the fact that in my 20s I acquired two (TWO!) chronic illnesses. I know as I age, my risk for more only goes up.

Along with many other people, I've been thinking about New Year's resolutions. All the ones I've come up with pretty much boil down to one thing: do healthier things for myself and my family.

 For example, this is unhealthy and pretty stupid:

That is a picture of my diaper bag. With all the contents there, plus Doug's sippy cup, the bag weighs close to 12 lbs. TWELVE POUNDS. Twelve pounds on my shoulder every time we leave the house. I don't have to tell you that this is bad. It's bad for anyone, but horrendously bad for someone with fibro. I was able to pare it down to 9/10 lbs. I wanted it closer to 8. Next week I'm going to go look at Vera Bradley's 'Mom's day out' bags to see if that would better fit our needs. The diaper bag plus Doug means occasionally I'm carrying 40 lbs. Yes. 

In other fibro related resolutions, I've decided that I'm allowed to say 'no' to things. I'm allowed to say 'no' to things that I feel are going to over tax me. It probably won't happen much, but saying 'no' more means saying 'yes' more to Doug. 'Yes, we can go to the park' 'Yes, I'll get out of bed right away' 'Yes, I'll play with you' 'Yes, I'll make dinner now'. So please don't be offended if I say 'no' to you.

I've also decided that I'm allowed to wear sneakers all the time. I have TONS of gorgeous, lovely heels in my closet that I haven't worn for years (mostly because I'm getting smarter). I've found that if I wear heels, I will spend the next day in agony. The muscles in my calves do not remember how to relax well; they need the support of sneakers. I do have some nice flats I can wear from time to time. I've also found that low wedge heels are acceptable for a while. Don't worry Erin; I won't wear crocs or sneakers to your wedding! I shall be cleaning out my closet soon though.

I also want to change the way we eat. I obviously am going to try to include more fresh fruits and veggies in our meals. I feel that when I cook, we do eat fairly healthy things. However, when I don't cook, we don't eat so healthfully. Unfortunately when I don't feel well, which happens from time to time, making dinner is the last thing I want to do. So we go out or grab some fast food or order in. My goal this year is to reduce the number of times we do that. I plan to go through my recipes and find things that will freeze well. I can make double one night for dinner and freeze the rest. That way when I'm having a flare up, we can just defrost a nice homemade dinner. I did a similar thing when I was pregnant with Doug, and we had some nice dinners to have when Doug was a newborn. I also want to make more soup. Mostly because homemade soup is delicious.

I also plan to do completely crazy, off the wall things this year. Absurd things like eat breakfast AND lunch. Drink more water. I've decided to set my exercise goal to be one aerobic activity a week (chasing Doug through the store with a huge cart won't count, but it sorta counts). Once a week sounds low, but with the fibro, I want to slowly increase exercise. I'd also like to start yoga again. See the insanity?

What are your New Year's resolutions?

Wishing you a happy and healthy New Year!

The Sanctity of Tuesday

You know the opening scene in 'The Emperor's New Groove', where the old man gets in the way of the song and dance number and Emperor Kuzco throws a hissy because his 'groove' was thrown off?

That was me last week. Except I wasn't yelling at a little old man, but at the government.* You see, doing nothing on Tuesdays is totally a thing around here. Going to vote is definitely a thing. A thing that totally threw me off my groove. Voting is something that involves me not wearing my PJs and dragging Doug with me and standing in a looooong line. All things I hate doing (except the being with Doug part). I did try to vote early, but believe it or not, the line was worse. At any rate, I was able to drop Doug off at my parents' house and then go vote. Missions exasperatedly accomplished.

I take Tuesdays off, they are my crash days. I take this very seriously. Well, as seriously as you can take something when you sit around in your PJs for most of the day. Let me explain the origin of the 'Crash Day'. Having a few chronic illnesses makes me a tired person. Most people who know me well, will hear my say "I'm tired" about 673 times a day. Doug even knows this. He'll look at me and say, "Mommy's tired."** At any rate, when the fatigue starts to build up, the pain will too. Such that when I know I've over done it, my muscles will begin to twitch as sort of an early warning system (which is occasionally too late to do anything about it). I have found through experience that if I ignore these sign and keep on going about my business during the week, I crash unexpectedly. By setting aside one day a week in which I don't need to leave the house, let alone get dressed, I save a lot of energy and restore myself. Its kind of like when firefighters are fighting a forest fire and they set their own fires to prevent the blaze from spreading. By intentionally taking it easy once a week, I prevent most other fatigue crashes. It's brilliant.

Monday was  my day to crash for a while. We're usually busy on weekends, running errands, fun outings and going to church. Mondays I was tired, so it was a natural day for me to take it easy. Then Doug's story time at the library moved from Wednesday to Monday. I realized I could hold off my crash day for one more day and the Tuesday Crash day was born.

Crash day is a wonderful thing. I do look forward to it every week. On Tuesday morning, I permit myself the luxury of letting Doug watch a DVD, by himself. Doug will wake up, and then I'll change him and dress him and fix him something easy and non-messy for breakfast. He'll usually have dry cereal (for whatever reason, he's not big on milk in his cereal), toast or a cereal bar and some milk. I will then turn on a DVD of his choice, usually Olivia or Thomas, and then go back to my room, leave the door partially open, and then lay down for about an hour. Occasionally Doug decides to be the world's most persistent snooze alarm, and come in about every twenty minutes or so. Sometimes he comes in because he wants something, or he needs a snuggle or he just wants to check in. Either way, I'm totally fine with that. Then I'll get up, Doug and I will hang out, I'll make him some lunch, and then it's nap-time for him and more relax time for me. He'll usually nap until the second shift, Jeff, gets home. I usually have something quick ready for dinner on Tuesdays, or Jeff will make something. It's really amazing what a difference taking it easy once a week can make!




*In my defense, albeit for different reasons, I probably wasn't the only one yelling at the government last week.  

**Over the summer when I had a bad flare up, he looked at me and said that, and then told me to go lay down. How can I argue with that? 

Reset

The summer has just flown by! I have to say, I'm glad it's done and almost fall. Summer is always a bit tough, I seem to be more prone to fibro flare ups, and indeed I had a nasty one in July. Just as I got over that, my thyroid decided to join in the fun too! I was worried about our trip, but my doctor was able to diagnose my low thyroid just in time! We went out to Kansas City for the last week of the summer. It was nice to visit with my in-laws and Doug always loves seeing them. I feel that we were really able to get potty training well under way while we were there, with four adults watching Doug, he was taken to the bathroom quite a bit. But we got to relax and more importantly get out of the rut that my illness had set us into. It was very cleansing. I think I'm back on track and I'm totally ready to enjoy my favorite season of the year: Fall!

Until next time, here are some pictures of our Kansas City fun!


This first set of pictures are from Lego Land. Doug asked to go back there just about every day.

In this picture he's helping his Pop-pop make a house out of tissue box sized rubber Legos.


There were small wading pool sized tubs of Legos and Duplos everywhere! They had some farm animals that Doug absolutely loved. However, they didn't have them for sale in the store!


They also had some cute Duplo cupcakes. They only came in pink however, Doug loved them regardless.



After going to Lego Land, my brother-in-law recommend this place for lunch, I think it was called 'Fritz's'. You meal was delivered via train and a basket. Both Doug and Uncle Matt were very excited about this!

Here's a shot of Doug looking at the trolley that went by our table.


Here comes our food on the train!



Doug's great grandmother, Nan, came over from St. Louis to visit with us for a few days. On one nice day, we went fishing. After about 15 minutes, Doug caught a fish. And then he was done.


Unfortunately, this cool park was right by the water, and after he caught his fish, Doug wanted to go slide and play.



The last two days we were there, the remnants of hurricane Isaac caught up to us. There was lots and lots of rain to play in!



The second rainy day we headed up to the mall to wear Doug out before we got him in the car the next day. The mall has this fairly unique two level carrousel.


We all had a good deal of bbq and fun in Kansas City!

Accepting Failure

One of the effects of having a chronic illness or two can be a some what restricted life style. Most of the time when I look at my life under a small lens, I see that things are mostly fine and well. But if I look broader, I see that some aspects of my life are just not coming together as much as I'd like. And I'm starting to believe that's okay.

I recently started reading a book that was recommended to me called 'The Ragamuffin Gospel'* by Brennan Manning. I'm not too much more than 50 pages into it, it's a rather 'deep thought' kind of book, but I'm really getting a lot out of it. The central theme of the book seems to be about God's grace for us, and that we can't do anything to earn it, it's just given to us as a gift. Essentially, God knows we don't have it together, and that's okay.

This book was recommend to me ages ago by my pastor. I kept putting it off and putting it off and then last week I ran out of things to read and remembered this book. Some times when I pick up a book, it's the right time for me to read that book. Like I'm ready to experience it, that I may not have appreciated it as much if I'd read it earlier. That seems to have happened with this particular book. We've started the New Testament in my Bible study and I was starting to feel that I wasn't doing enough as a Christian. I started thinking "Well, now there's potty training, healthy shopping and cooking, exercise, Bible study, Church, story time, quality play time with Doug, quality time with Jeff and some time for me so I don't go postal, and oh yeah, let's work in some volunteer time too!" Yeah. I don't see it all happening either. This was helping me feel more anxious and overwhelmed. Then at one point in this book, a single mother tells the pastor that she feels called to a soup kitchen, but doesn't want to leave her kids with some one else. The pastor said something along the lines of ' you being a mother is enough for God'. And then my mind went "ooooh". It helped me let go of some of the anxieties in my life.

I have trouble sometimes accepting limitations due to illness. Things like not getting to church, or story time or making dinner for my family. I've come to slowly realize that failing can be okay, that I need to let it go. Tomorrow is another chance to make things right.

My ragamuffin.

*The full title is 'The Ragamuffin Gospel: Good News for the Bedraggled, Beat-Up, and Burnt Out'. See why I thought it was appealing?

Off and Running

I think the title should be more like 'Off and Walking' or 'Off and Strolling' but I thought the one I chose looked better. Anyway, we're a week into the New Year and life is going well. I love the holidays, but I'm glad they're over. I like it when our schedule relaxes and things can go back to normal. We do have a bit of a birthday blitz in the next two months, but that's not as crazy or as all consuming as the holidays can be.

I've started feeling better. I do tend to do better with my fibro in the winter. It's something about the heat that tends to increase my level of fatigue. Conversely, my hypothyroidism tends to get worse in the cold months, my thyroid's activity tends to decrease and I experience more aches in my joints. I'd rather be dealing with thyroid issues then fibro ones as the thyroid is relatively easy to fix. I've also been off of Lyrica for about a month and a half now. We added Lyrica to my regimen about a year ago to help deal with my skin sensitivity*, but it didn't work, so it just got increased and increased until I was taking a mind boggling amount of it. It was also causing unpleasant side effects, so I went off of it, which took forever because its a drug you have to back off slowly. So I noticed that when I was in Kansas City for Thanksgiving, that I didn't need to take naps that week. That was the first full week I was off the drug. Then one of my girlfriends mentioned that she'd been on a mood stabilizer that was causing her lots of fatigue. Then it just clicked into place. So now that I've been off of Lyrica I've had more energy. I was taking naps almost daily in the fall, and I rarely got anything done.

We've had a very definite upswing on the quality of our lives. The house is cleaner and more organized. We've eaten more healthy homemade dinners. Doug's gotten more quality play time. We've been attending church more. Yesterday we hit story time for the first time in months! So, here's to you, 2012! Lookin' good!


*The skin sensitivity has a fancy smancy name: tactile allodynia

Cool Moms Wear Pajamas

Right? Don't they?

That should give you a pretty good feel for how things are going around here lately. About three weeks ago, Doug acquired a cold. Then he gave it to Jeff. So, I pretty much didn't stand a chance. What was some minor sniffling to them became a whole ordeal for me, requiring Jeff to stay home one day and my mom to take Doug the next. The cold then developed into a lovely sinus infection. I've been tying to scrape myself together since then. You know how some one who has asthma wheezes, their lungs desperate for air? If my body could make a sound like that for all the sleep it craved, the noise would be deafening.

In other non-pajama related news, Doug is talking. For real. I've officially lost track of the number of words he has, which is a great sign. He's also working on the concept of 'off' and 'on', two of his new favorite words. At first, only the tv in our bedroom could be turned off and on, but then flashlights could be on as well as toys. This morning he brought me a can of play doh and said "on!", meaning to open it. Almost there. He's also been teething a ton. He's got his canine teeth coming in along with possibly three others. This has led to a bit of an eating strike on his part, but with some Advil and soft food, we were able to get him to eat something. We discovered at his 18 mo appointment, that he hadn't really grown at all. His doctor was concerned but not overly so. But now we have to see his doctor again in three months instead of six to check his growth. So his little eating strike has made me anxious. Some of my cousin's sons went through the same thing, so I'm not that worried. Maybe our kids are normal, and the others are huge? Anyway, I've resolved to monitor Doug's food intake more and try to make sure snacks happen more.

I finally joined something at our church. This is a big, hairy deal! I've been afraid to commit to something for a while, because I was afraid I wouldn't be able to make it to something because I wasn't feeling well. I decided I'd missed too many opportunities and I joined a bible study. It's very structured and it meets for something like 34 weeks. So far, I'm enjoying it. We're supposed to do a little reading each day and make notes in a workbook, but typical me, I leave it all to the night before. I suppose some habits are just hard to break. Some how I didn't study the bible much in the 13 years I was in Catholic school. I'm not sure how it happened but it did. Right now we're looking at Jacob and Joseph's family and I really wish I had the sound track to 'Joseph and the Amazing Technicolor Dream Coat'. Oooh, I've discovered it's 8 bucks on iTunes. Nevermind, it sounds awful. It sounds like a high school performance. I shall wait and get a better one some other time.

Doug is asleep, and for my quiet time I'm going to go curl up with a Sookie Stackhouse book. Those things are addictive! Also, she's kind of like Jessica Lansbury, every where she goes, people drop dead. I would move out of her town if I lived there. Anyway, my book and a comfy chair is calling me!

Fighting Back

One day last week I was lying in bed and wondering why I was there. The answer was obvious, that I was exhausted and couldn't do anything more. And then I began to wonder why I was letting that stop me from doing the things I wanted to do, from living my life. I realized that yes, I was tired, but I can decide to succumb to it, or push through it. I will grant you, that this attitude is easier on good days than bad, but even on bad days I need to do something.

Last week, thanks to an old acquaintance, I met a new doctor to treat my fibro. He's not a rheumatologist, but a chronic pain doctor. He also has actual fibro patients, I'm not one or two of fibro patients he treats, but about one of thirty he sees weekly. That's a lot of fibro experience. He wasn't happy with or complacent about my treatment either. My first doctor told me that he aims for a 60% recovery for his patients. I've always wondered why he didn't want more for them. This new doctor is willing to try new things, one at a time to see how I react to them. He's also willing to see me more frequently, once a month instead of once every three months. I'm sure that appointments will become farther in-between as the fibro becomes more stable. But he gives me hope, which is more than any other doctor has done so far.

Last week I started yoga again. It wasn't something I was planning on doing, but I got a groupon offer for classes at this studio and they offered some gentle yoga classes. Sometime I think things like that land in your lap for a reason, so I jumped on the offer. The class was definitely more challenging than my lost yoga class, which was mostly done in a chair*. It was hard but not impossible. I left the class sore, but feeling well. I also didn't realize how weak some of my muscles were, which was a good wake up call.

I've been lamenting the shape of the house for weeks, smears on the kitchen floor, crunched cheerios in the carpet, dust everywhere. I began to wonder 'Why can't I have a clean house? Who says it's impossible?". So last night I decide I'd take the house one room at a time and clean it. Thoroughly. So far the upstairs bathroom is done as well as the kitchen. I bought a large wicker bin for the living room to stow some of Doug's larger toys in.** I feel pretty good about what I've accomplished so far and look forward to finishing the job!

Have a great week!


*The last yoga class I did was a therapeutics class, full of mostly older women with various types of arthritis, so many things were done on a folding chair to accommodate that. To be perfectly honest, it didn't really feel like yoga to me. Also, folding chairs are not friendly to fibro type people. Ouch.

**The main toy room is in the basement, but Doug manages to have toys in the living room as well as his room, which got a toy basket long ago. I swear he's taking over the house!

Back in the Saddle

So. Wow. Several weeks have passed since I've updated my poor little blog. Well, starting about May, my thyroid condition started to get worse, leaving me fatigued. I swear there are sometimes that I think my middle name is fatigue. Anyway, then a TON of family on Jeff's side came into town. His parents stayed for two weeks, it was a blast. Then right after they left his aunt and uncle from Texas visited while they were in town for a wedding. It was nice to see them again, they hadn't met Doug. Then we had a break for about a week, and then Jeff's aunt and cousins from Alabama came to stay with us for a week. While they were here another one of Jeff's uncles from Kansas City was in town with his family. They were all here during Jeff's birthday, which was really special, as he never has family here then. There were a LOT of people, but we all had a good time.

At around this time I started seeing a new rheumatologist for my fibro. It turns out that he's leaving that practice, which is really annoying, as I had done quite a bit of research to find him and I liked him. At least he was up front and honest about treatment. He started me on a new anti-depressant to see if it helped my skin sensitivity. It did not. Even if it did, I wouldn't take it. I'm just now getting over the side effects from it-more fatigue. I couldn't make it through the day without a nap, unless I slept in. There were days in which I really couldn't get out of bed for quite a while. Sundays were the worst. We missed a LOT of church. Today is the second day in a row I got up at 9 and did not take a nap. Praise God! I'm starting to feel more like myself again.

A week and a half ago, I was starting to get things back together. We were on our way to church, when we got into an accident. An SUV pulled out in front of us from a gas station, another SUV was on it's tail, he didn't see us on the main road. Jeff swerved to avoid hitting him head on and the other driver ended up hitting us, on my passenger side door. In the car port is my THIRD rental car in two years. Ridiculous. Anyway, it was pretty low speed, but I felt tired and sore for a few days, but it's alright, because Doug was fine. I don't think I saw the other driver hit us because I looked back to check on Doug. He didn't even realize there was an accident until he heard his daddy swearing a blue streak! I don't blame Jeff there. We're hoping we're done with car accidents in our life time.

Doug is being Doug. He's still signing tons. I'm pretty sure he says 'dada'. The trouble is, when he babbles, he mostly babbles 'da da da da da'. But I can tell there are times he says it with meaning. He will also say "bubu!" complete with blowing for 'bubbles' at times. I've noticed that he can say the first sound in some people's names, with intent. For example, if he's looking for my brother John, he'll say "Jah? JAH!". Doug will say "guh?" for 'grandma'. So we're just waiting for him to add more words and sounds to his repertoire.

So that's all for now, I'm hoping I'll be able to post more regularly.

Story Time

This week I took Doug to story time for the first time. I've been attempting to do it for some time, but for one reason or another, it just hasn't worked out. One of the problems we had with getting to story time, is that it's so early. Yes, I know that sounds crazy, but a story time at 10:30 is a little bit tricky for us to get to. It takes at least an hour and a half for us to get out the door in the morning. This includes a shower for me, dressing myself and then doing something with my hair. Then I have to change (usually twice) and dress Doug. After than, I have to shovel some breakfast down his throat and get his coat on and gather all his paraphernalia. It's exhausting. However, now that Doug is one, he now can go to the toddler story time, which starts at 11:15 and is a much more manageable time for us.

The other issue was my fibromyalgia. I am usually tired and sore in the morning, so getting up and out isn't always an option. Lately Doug has been sleeping in until 11:30. I blame the time change and my need for extra sleep. Recently I've started a new drug which really seems to be helping with the pain and fatigue. So it took a while for us to get all our ducks in a row for story time. Crazy, I know.

When we got to the library, we arrived a little early for the toddler story time. I asked at the children's desk where it was, and we were ushered into a room where a story time was already taking place. At first I was confused, I thought that maybe the time had changed. It turned out that we were in the story time for infants. I mostly deduced this from the fact that Doug was the biggest child there. We stayed for the last half of that story time and stuck around for the next story time which was for toddlers.

The story time for toddlers was a different beast entirely. Doug got into a couple of scraps with a few of the other toddlers. Most of the kids were up and walking around and getting into stuff. There were a few people from the earlier story time with older children who also stayed on for the next story time. The girl and her mother that had sat next to us stayed too. The girl was a little tiny thing, yet she was walking around kissing everyone. Turns out she was only 7 months! She'd started walking when she was only 6! Anyway, at one point her mother offered her some Gerber puffs. Doug loves those things and he saw this go down. So, Doug being Doug, toddled over and looked at the mom expectantly. She asked me if it was ok, and then offered the cup to Doug, who promptly grabbed three of them. After that I grabbed him and sat him on my lap so he didn't finish off the little girl's puffs. Unfortunately, Doug didn't think he'd had enough puffs. He kept wandering over to the mom and badgering her. She hid them, but Doug is all over object permanence and tried to get to the hiding spot. As a desperate move, I grabbed him and clipped his pacifier to him, hoping that if his mouth was busy, he'd leave the puffs alone. It seemed to work for a while. At one point, Doug wandered into the middle of the small room with some of the other kids. He walked over to a little boy exactly his size. They stood very close sizing each other up. Doug didn't have his pacifier in his mouth, but he was fingering the leash it was on. The little boy noticed this. Doug noticed the little boy eying his pacifier and got antsy. Luckily, before the little boy made a grab for it, his mother grabbed him. A few minutes later, the little girl that we'd been sitting next to noticed Doug's pacifier as well. She had one clipped to her clothes, but nearly knocked Doug over trying to get to his. As they were both close to me, I popped her's in her mouth, and the crisis was resolved. The last scrap Doug got into was when an older and much bigger boy knocked him over. Doug cried, mostly because he was surprised and didn't see it coming. Over all, it was a pretty positive experience. Doug enjoyed seeing other kids and it was nice to have something to do. A reason to get out of the house. I think we'll be back next week.

Thyroid Awareness Month

Did you know that more people have hypothyroidism than diabetes? Yep, it's true (if you're wondering why it's relevant, they're both endocrine disorders).

I imagine that a fair amount of people have little to no idea what hypothyroidism is. January is Thyroid Awareness Month, so I will share some info and first hand experience with you!

The thyroid is a butterfly shaped gland in your neck. You can actually feel it (and your doctor should totally check it!) it's your Adam's Apple. Your thyroid is responsible for producing hormones that regulate your metabolism and growth rate and about a zillion other things in your body. That is the quick and dirty description of it. It's a little gland, but it's incredibly important to many, many of your bodily functions.

When your thyroid is functioning well, life is good. When it goes bad, it goes bad. There are two autoimmune diseases (and the most common problems with your thyroid, aside from cancer) that effect the thyroid. One is Graves disease, which causes hyperthyroidism. Basically, your thyroid starts producing too much thyroid hormone. The symptoms associated with Graves are heart palpitations, excessive sweating, excessive hunger, weight loss and muscle fatigue. Treatment focuses on ways to slow down or stop the production of excessive thyroid hormone. One method for treatment is radioactive iodine, basically to destroy parts of the thyroid. One unfortunate part of Graves disease is that it leads to hypothyroidism.

Hypothyroidism is the result of a decrease in the amount of thyroid hormone in your body. The name for autoimmune hypothyroidism (which is what I have) is Hashimoto's Thyroiditis. In my opinion, the hyper people have a better name for their disease. Anyway, there is a laundry list of symptoms for hypothyroidism: lack of energy, hair loss, abnormal weight gain, brittle nails, dry skin, extreme sensitivity to coldness, brain fog, muscle soreness, difficulty getting pregnant. The list goes on and on. Treatment is fairly easy, hormone replacement pills, to be taken everyday for the rest of your life.

Although treatment is fairly straight forward, getting diagnosed was tricky. The symptoms of hypothyroidism are vague and can be caused by many other diseases. Fortunately, all you need to get diagnosed is a doctor who is paying attention and a simple blood test. I saw maybe close to half a dozen doctors over a span over seven months before I was finally diagnosed. It was a long and scary battle. I started feeling better a few weeks into the treatment. For the better part of 18 months, I was getting tested monthly, and my dose changed several times. Since my pregnancy ended, my thyroid has been stable.

I am obviously not a doctor, but if you have concerns about your thyroid, you should definitely check with your doctor. I am happy to discuss my experiences further if you have any questions!

Tomorrow, Tomorrow & Tomorrow

Tomorrow I will write in my blog. Tomorrow I will wrap those gifts. Tomorrow I will address those cards and go to the post office to send packages. Tomorrow I will make food for Doug. Tomorrow I will register for yoga. Tomorrow I will go to the lab to get my blood tested. Tomorrow I will send emails. Tomorrow I will visit my grandfather. Tomorrow I will do the laundry. Tomorrow I will make dinner. Tomorrow I will get up at a decent hour. Tomorrow I will take Doug for a walk.

Right now my todays are full of tomorrow. I'm trying to find the balance between too much and too little. It's a fine edge. It's Wednesday and I'm finally starting to get a handle on this week. But, I did get to do some things yesterday, so a small victory there!

So here's to tomorrow!

Still Here

I'm still around. The last week or so has been full of ups and downs. The good news is that the medication goes a long way to getting rid of the daily pain. The bad news is that the fatigue is still around and is at times worse than usual. I feel like I had more things to say, but here are some pictures of the cute.

Diagnosis Dressing Room

When I go shopping, I'll see something I like and try it on. If I like it I'll take it home and try it on with other things. Occasionally I'll find that something doesn't fit or look as well as I thought it did. Other times I'll find that I don't have anything that goes with it. When I'm really looking for a specific article of clothing, I'll do some serious research. I didn't just buy a wedding dress. I checked out many styles online and in magazines. I went to stores and tried on many gowns, even after I thought I found 'the one'. Eventually I made it back around to the dress that was 'the one' and bought it. I was satisfied with it because I had tried on so many, and this one was exactly right.

The same is true of any diagnosis. I've tried on many hastily-made diagnoses only to get home and find out they didn't cover half my symptoms. Sometimes I'd be so over joyed at the Dr.'s office that I would forget there were outlying symptoms that didn't fit into the criteria of a condition. Frustrated, I'd return to my doctor to try something else on.

I've been tested for many things over the years and recently. I was pretty sure I knew what I had, I just had to wait for the right Dr. to see it too. I liked my rheumatologist, hence forward to be known as the 'rheumy'. I did feel a twinge of regret for the man, he seemed slightly taken aback by my knowledge and experience. I should have introduced myself differently. Perhaps something like; "Hi, I'm Katie. I'm a professional patient.". But he took me seriously and listened to my vast medical history. He's running a few tests on things I've already been tested for, mainly because the testing protocol has changed on some of them. Due to a lack of outward signs, I doubt anything will come up for Lupus or Rheumatoid Arthritis. The doctor agreed with me and said that I very most likely have fibromyalgia.

I don't like having it. I'd like to have had him say that there was a vitamin or mineral deficiency, but I am so relieved at receiving a diagnosis and medication to help it!

Happy Friday everyone!

Rock the Boat Baby!

Wednesday morning I woke up fatigued and in pain to the point I was crying. Not a great way to begin the day, especially when your son is hungry. Luckily my in-laws were here and they took over so I could sleep. Sleep was unfortunately difficult due to the amount of pain I was in. As I laid there in bed, I got madder and madder about the situation with my doctor's office. I decided it was time for some action.

The first thing I did was to call the physical therapy office (2 days after the receptionist swore to fax the referral over there) to see if they had yet to get the referral. They had not. Color me surprised. From there I decided it was high time to launch a complaint against my doctor and the office staff. The office is associated with a larger network, with a university and some hospitals in the area. I wrote and sent the email really more for me. I doubted anyone would read it. The email was not angry, just curt and very factual about the many failings I had experienced at the hands of this office. Later that morning I checked my email and had a response. They'd received it and were forwarding it to some one else. That afternoon I'd gotten another response saying that it has been forwarded yet again. This was a lot more than I ever expected from my little email!

Thursday I actually got a phone call from some one in my doctor's office. I think it was the person in charge of quality care. I had evidently managed to ruffle quite a few feathers. She informed me that the fax had indeed been sent on Monday AND the receptionist who did it got a fax confirmation. I told her that this was not the case, as I talked to the physical therapy office and they had yet to receive anything as of Wednesday. She then went on to inquire about the infamous radiology referral. I told her that I was declining it. What I really wanted to tell her was that she could take it and shove it where the sun don't shine, but she was being very nice on the phone, so I stove to be as well. Next customer service lady told me that another doctor was reviewing my file. Here I had to stifle a laugh. I only have negative test results (and TONS of them) so this should be interesting. I don't really care what the other doctor says. I'm not wasting $25, an hour of my time and my energy to find out. After all, I'm going to the promised land of doctor visits on Friday, the rheumatologist.

This past Friday I decided to call the physical therapy office again, just for kicks. It seems they indeed got the hotly debated fax! (insert choir of angles singing). So I made an appointment for the following day, Saturday.

The appointment deserves it's own paragraph, or maybe even two, so here we go. The appointment was everything I'd wanted and more. I know, again, I am odd. The pt guy, as he shall hence forth be known, was very nice and very skilled. We quickly went through my history. When I finished giving all my negative tests results, I noticed a furrowed brow. The "Oh, my God, I can't be the one to tell her what I think she has" kind of look. I eased the tension by telling him what I thought it was based on the non-existent positive results.* And you know what, my dear internet peoples? HE AGREED WITH ME! After having my doctor shoot down my researched self diagnosis, it was so so sooo lovely to have some one agree with me. Made my week. Certainly makes me feel more relaxed about the rheumatologist appointment Friday.

So the treatment. The physical therapy I get is a little unusual. In fact, I think only two clinics in the D.C. metro area practice it. Its called 'Trigger Point Dry Needling'. Google it, its a real thing, honest. I've had it done twice before to great effect. Anyway, muscles can have these things called trigger points in them, little knots if you will. These knots remain tense creating tension in the muscle. The tension restricts blood and waste removal in the cells that are tensed. So, the pt guy finds the trigger points and uses an acupuncture needle to release the tension. They stick it in (doesn't hurt) and move it around. Basically your body senses injury and sends all kind of good things to the muscles to release the tension. When I left the office I felt kind of high for a few hours because my body was working so hard to stop the 'injury'. It's not unlike the high you get after a workout at the gym, or maybe like a runner's high, though I know nothing about that. The therapy itself doesn't hurt per se, it just feels odd. Kind of like having your muscles flossed. Hours afterward there is soreness, but the actual treatment doesn't hurt so much.

And that is how I spent my weekend.


*I'm not quite ready to release my self diagnosis the the general public. If it's confirmed on Friday, I'll let y'all know. What I think I have is not life threatening nor is it degenerative. It's just annoying. Really annoying.