Recovery damnit!

 

Day 1 pretty self explanatory

Day 2 cuz yep it was our 10 yr anniversary

Day 3- just me and my bucket!

So sometimes remicade does this thing where it makes you really sick for several days after an infusion. It doesn't always do it, but I had the golden ticket this time and have been sick in bed for 3 days.

The kicker is that today was my sister in laws birthday party. I showered, feeling very much like I would pass out so I used my trusty shower chair! I got dressed, though at that point the dizziness was so bad I told M "I've never fainted, but I would imagine it feels a lot like this right before it happens", so my outfit ended up being cut offs and 2 tank tops because I didn't like the first one but didn't have the strength to take it off. Despite this less than stellar beginning to the evening, and having eaten nothing but bananas and gluten free donut holes in 2 1/2 days, I was determined to go. M walked me to the car fearing I would pass out (tried to shake him off but he laughed because I'm so dizzy/sick), and after he grabbed me a bucket and towel (I think he's traumatized by the time I decided I was fine to go to the dog show with my kids and him the day after remicade and ended up puking on the side of the freeway...... but maybe I'm wrong) We were on our way! Aaaand I threw up before we hit the bridge which is like 3 miles away. He drove me back home with both of my kids crying that they wanted me to go and they didn't want to go without me (knife meet heart). I had to walk away from their tears because I was just so sick. Yes that does suck as much as it sounds.

I spent the rest of the day tucked in bed with my bucket friend. As long as I don't eat and lie perfectly still not moving any more than necessary the stupid dizziness subsides and I don't puke.....

Can't wait to see what tomorrow brings! Usually 2-3 days is my recovery time in these instances so as long as I can get some food in me at some point tomorrow should be fine. I really hope so because we're supposed to take the kids to the pool and I really can't handle breaking their hearts twice in the same weekend. 

And today was an example of why I hate this so much and what is the very worst part of this disease. I let down people I love left and right. 

I think that about covers it today. 

Finally!

Thank you thank you thank you!! I've never been so excited to sit in a chair in a cold room with poison running into my veins!

I'm currently stuck in bed, once again on my left side since that seems to usually be the most comfortable. I can barely breathe my rib cage is so tight and muscle relaxers are doing nothing.
Every time I move it feels like someone stabs an ice pick in my back and it runs down the back of my leg, but even lying still it feels like there are hard tight balls of muscle all along both sides of my spine from my mid back down to my butt. I'm honestly surprised when I put my hand back there that I don't feel hard baseballs in my back. It is swollen but only mildly. It's amazing what the body can take.
So, cross allllll your fingers and toes that remicade takes the edge this again cuz it is less than fun! 😬

Now, if you follow my rants you know the remicade didn't help as much last time as it used to, which is part of why I stopped it, but I think this time may be different. Why yes I will tell you why! Whether you want to know or not😉. I was off of my remicade (immunosuppressant- TNF immunity blocker) for a year for my two spine surgeries. Obviously the last thing you want to do when cutting your body open and planting cadaver bone grafts and drilling screws around is suppress the thing that heals you!
Anyway, when you start remicade they do what's called an "induction period". This is a "loading" period. Meaning that they flood your body with these meds to shock and destroy your immune system, then the infusions every 5-6 weeks are maintenance to keep your immune system idle/suppressed so it can't attack you anymore. This over-loading period is important to really flood your body and make sure to take out the immune system completely rather than just diminishing it a little bit at a time with maintenance infusion doses. Make sense?
Now, after the year absence of remicade I went back on it in March 2017 and.... they didn't do the induction period! I thought it was odd and even asked about it, but I had a different rheumatologist back then.... nuff said about that.
So my new, wonderful, genius, caring rheumatologist decided that even being off for just 14 weeks is enough time to do the induction period again. (!) I mentioned my theory about that being why it wasn't working as well and she agreed that could definitely have messed things up.
But, here comes the scary part. After a time on these immunosuppressants you can build up antibodies to it. Antibodies fight and kill things in your body (anti-body). This means that sometimes after being on these meds your body will essentially build up a resistance to them through these antibodies, which essentially destroy the medication when you put it in your blood stream.
So all those fingers and toes you haven't crossed yet, cross them now and hope that I haven't built up antibodies, because the solution there is to either 1. add a chemo drug or 2. change immunosuppressants completely from the TNF blocker family (which has been successful for me for periods of time) to the interleukin (IL) blocking family, which is a newer class of immunosuppressants to the medical community and to me. So, a big ol unknown.

Buuuuuut, all that aside let's focus on the "yay!" And be excited that I get my remicade back TODAY and that it will hopefully get me out of this darn bed!
(I love you bed, it's not you it's me, I just feel we need some time apart...)

Experiments with broken glass

The irony of a disease like mine and a blog is that on your worst days, when you need to vent and write the most on your blog, your hands are too painful to actually do it. Here I am though and I'll give it my best shot.

In my great wise, pseudo scientific mind I decided to stop my immune suppressant infusions. I have been on these medications for over 3 years so I was questioning whether they were really still helping. I have been feeling awful lately, so honestly rather than my scientific mind it was probably more of my petulant child mind saying "if I'm going to feel like shit anyway why am I putting this poison in my body?".
These medications are no joke. They are extremely dangerous and can create unforgiving situations where people die within days. That's not drama, just reality. So, you can see why I wanted to verify their efficacy.
I have had very good experiences with these medications (known as TNF blockers) all along. My first medication felt like a miracle. I was in absolutely terrible shape at that point having been misdiagnosed for 4 years and simply have a 'back injury'. So, the improvement was remarkable. Sadly, that med stopped working, which is fairly common, so I switched. The second medication was inconclusive in it's effects, but the third was awesome yet again, and that's where we landed until 12 wks ago.

Now 3.5 years later I seem to be suffering from "worsening severe fibromyalgia and myofascial pain syndrome". The flare ups have been getting worse and worse over the last 6 months and were genuinely confusing matters in terms of symptoms and treatment.bit all cane to a head about 12 weeks ago when I had been amidst a, seemingly neverending, flare up and having a lot of trouble dealing with it emotionally this time. I have had a positive attitude all along and generally can handle whatever comes, but for some reason this one was really getting to me. So, finally I told my Dr as I cried in her office that I wanted to stop treatments. "If I'm going to feel like shit anyway, I don't want these medications".

Fast forward 12 weeks later and I am in bed in intense pain and unable to walk much more than you the bathroom. It feels like there's

broken glass in each joint between the vertebrae and like someone is grabbing handfuls of muscles and twisting them as hard and far as they can. The ice picks in my SI joints are getting worse and worse again.
I think the immunosuppressants might have been working.....
I spoke with my Dr today and she is ordering my infusions again. I start next week. Thank goodness.

As miserable as I am at this moment I am glad I did this. When the the risks are discussed with me, which they are every time I go in, I will start least be able to tell myself that it's working and worth it. Once again quality of life vs quantity, but at least I know now that I am choosing correctly.

11 year old lifesaver

No, not the candy kind, the kid kind.
Since my return from Maui my body has not been my friend. I seem to float out of flare ups only to crash back into another one. This time the flare up has been at it's worst for 3 days, which also happened to be when my daughter started school.
I've talked before about the guilt factor and how this effects my family more than me, and this is a shining example of that. My poor almost 4 year old has been relegated to my bed for tv shows, games and movies and occasionally to the backyard while I sit huddled under a blanket on the big cushioned chairs watching him play.
Another thing having him home during bad flare ups does is prevent me from resting. Rest does help the flare up end sooner sometimes, but it always helps my ability to deal with the pain and fatigue while it's happening.
So, as I drove home with my 4 yr old boy, 7 year old daughter, her friend and her friends sister one day discussion began about a playdate. The older sister is 11 years old and my boy B absolutely adore her. He's been in the car carpooling with her for 2 of his 4 years, she is the daughter of a close friend and a helper for our girl scout troop. So, as you can see she's spent some time with him.
As discussion of the playdate escalated B chimed in wanting a playdate with this 11 yr old girl, M. My first response was one of "4yr old boys don't have playdates with 11 yr old girls". But as M stated she'd be happy to come have a playdate a huge lightbulb lit up, albeit dimly, over my head. Would this amazing and responsible 11 yr old who I'd known for 2 years be able and willing to come babysit while I was home so I could rest?
Why yes!! Genius! I told her I'd pay her a little, though her mom told me not to, and it is a bargain for my baby boy to have someone who can physically play with him and keep her eye on him (and the 7 year olds)!
B had a blast, she got to be in charge (heaven for an 11 yr old girl) and make $10 and I got to rest. Win win win!
I feel like the world has opened up with this new possibility of having inexpensive in home help!!
Saved by an 11 year old.

Hope and the land of aloha

 

Vacations are stressful for people with chronic illness. The pressure we put on ourselves is massive. Our constant struggle at home may be Sisyphean, but for some reason we get these crazy ideas that maybe new places, beds, weather, stress levels, food and everything else that goes along with vacation will somehow get that boulder to the top, at least for a little while. In my personal experience this generally creates a situation in which nothing can go right and no one can win. 

A recent vacation with my family showed me these facts in bold clarity. I had gotten my hopes up that I would miraculously feel fantastic the moment we touched down in my favorite place, so when I didn't my heart and mind were bruised and confused. Lucky for me we were on this amazing vacation for 16 days (!) with kind and helpful family and friends so I really did get to enjoy the majority of our time. But, initially my hopes seemed dashed as I felt my [lately awful] normal. 

I'm not here to moan about my first 3-4 days on vacation being miserable for me and how poor me couldn't participate in family fun times. In my view how many people go on vacation and catch a cold or something random and end up in bed the first few days, right? 

What I'm here to explore is why on Earth we continue to build up these expectations of our body's reaction to various situations? Logically, I know that for me when I get my hopes up or my projections out of whack and they don't play out the way I wanted I get frustrated, sad, depressed or devastated, depending on the situation. These emotions do not manifest themselves in happy healthy ways in my (anyone's?) world. I tend to lash out when I'm frustrated or reality doesn't conform to my expectations. I also tend to withdraw when I'm sad or depressed. As you can imagine the worst time to do these things is on vacation, however it happens anywhere I am. Anywhere I set unrealistic expectations of my body and health. Which even after 7 years is still a ridiculous number of times.

I know people talk about hope when it comes to illness, but sometimes I truly wonder how much 

hope is a good thing. You need 

hope in the big picture because without it the 

will to live is severely

damaged, but hope when it spills over into individual circumstances and situations seems to walk a very fine line between expectation and disappointment.
Is this all still intricately intertwined with acceptance? Or can you have acceptance and still experience unrealistic expectations? What do you think?

Compassion and teamwork at the ballpark. Go Cleveland!

My super awesome husband is from Cleveland, OH. This effects our lives in more ways than one would think. One way is sports teams. As a die hard San Francisco 49ers fan myself, I will not discuss the football rivalry between he and I, but baseball is another matter. I'm not a big baseball fan. Love going to games, drinking beer and eating hot dogs, but I don't have a team I'm loyal to. This means my children are being raised as Cleveland Indians fans and they just happened to be in town this weekend.
I had purchased the tickets pre wheelchair status and didn't even think about it until we were there looking up at the 20 steps we were required to climb to get to our seats.
This is where I have to give props to Donna at the Oakland coliseum. She was amazingly helpful, compassionate and caring.
As we stood (well, I sat) there discussing with Donna, the usher, what our options were, many more ushers and staff filtered over with opinions and help. And we all know how much I love to draw attention to my disability (meaning NEVER, NOT AT ALL, HATE IT). It was decided that I could hop up the stairs to our seats and they would store my wheelchair somewhere.
Up I went on one leg hopping on cement steps. My leg gave out on one but luckily I had copious amounts of employees watching my every move and one caught me and helped the rest of the way.
As I reached the top of the steps, without any apparatus to help me walk, I asked which ones our seats were. He pointed down....way down the row to two sections away.
"Can we please please please just sit here?!" I begged standing on one foot with what I can only imagine was a pathetic look in my eyes.
"Ok, yeah sure. Just sit here. If someone comes we'll figure it out."
OMG thank you. I plopped down on the plastic seat sitting in 104 degree sunshine. It was like sitting on the sun. Both kids proceeded to plop down next to me and immediately started to cry.
I smiled and poured our cold bottled water on their seats but, having been burned before, they were extremely wary of touching the molten plastic again. M and I were desperately trying to make the best of it when our savior, Donna, queen of Oakland coliseum came up the stairs to check on us. Seeing our obvious discomfort she said,
"I can't stand to see you like this. I have seats for you down stairs in the shade."
So up I levered, thanking the gods and Donna, and hop hop hopped my way back down the steps in 104 degree heat, in flip flops, holding the hands of two lovely gentlemen I didn't know who were trying to prevent me from breaking open

my sweaty head on the concrete.
Around the little corner and two rows down lie 4 seats that were cool to the touch, in the shade and only two short hops back up to the concourse. Ahhhhhhh..... Have I mentioned that Donna is our new favorite person?
My wheelchair was tucked away in another section, so we sat back, chowed down on hot dogs, beer and cracker jacks and watched the Indians vs Oakland A's. Sadly the Indians lost, but a warm (ok insanely hot) beautiful summer day at a ballpark is glorious no matter what, in my opinion.
Around the 7th inning M wanted to take the kids to the "fun zone" two floors up. Realizing I would be alone I begged like a child to be taken to the bathroom before he left.
As the game ended M learned that they could go run around the bases on the field. We motored on down to the other side of the concourse where I said "have fun!" to my family as they walked into a line that was moving down multiple flights of stairs to the field. I rolled away with ears in my eyes. These are the times it's the hardest. When the three of them get to go have a magical, unique, memorable experience together and I get left behind. I don't under any circumstances begrudge them that, nor do I ever say anything about it to any of them, but when my little boy came up saying "it was awesome! Why didn't you go mommy!?" My heart broke a little and the tears I had dried threatened to reappear.
So goes a day at the ballpark for someone with a disability.  I guess the moral of this story is that disability sucks, it's embarrassing, frustrating, painful and heart breaking, but it also brings out the best in people - getting a team of ushers and

staff of a sports stadium working together to help you enjoy your time regardless of your mobility status. And that part is pretty great I guess.

A walker, a pool and a bathroom

I understand that the Walker is necessary. I know what's at stake. I get that of this electrical bone growth stimulator + walker combination doesn't work I will have to redo the surgery. And I heard my Dr when he said this surgery would be worse with a longer recovery.
All of that doesn't make non weight bearing with a 7 yr old, 3 yr old and 44 year old any easier.
Currently, we are spending the day at the pool. Our neighborhood is absolutely amazing, but I won't go into that here. Suffice to say we have a neighborhood pool. It's a hot summer day with no other plans than swimming and lying in the sun. My favorite kind of day. Heck, all of this family's favorite kind of day.
The only complaint I have in the universe at this moment is this stupid walker. It's not the walkers fault. In fact, as far as walkers go it's pretty awesome. It has huge wheels to go off road even. I hate the added effort this walker bring to everything in my life. It makes everything 5x harder than it should be and it's just exhausting. It makes me tired, it causes my back and rib cage pain to flare up (ironic huh?) and it's heavy. It draws attention to me that I could do without also.
The reason I bring this up is that I have to go to the bathroom. The bathroom is at the other end

of the pool. The effort scale is so high I have been putting off my inevitable trip down there as long as possible, but there's only so long a girl can hold it for. So, off I go taking 3x longer than normal to get to a bathroom my walker doesn't fit in, all the way inviting the entire pool (some of whom I know, but today most I don't) to feel bad for the young (ish) girl with the walker and to wonder what's wrong with her.
Never thought a trip to the bathroom could be so complicated did ya? Stick with me kid, everything is complicated in my world!

You Never Know What Tomorrow May Bring

NO LUPUS!! My Rheumatologist, being the super intelligent and compassionate woman that she is, realized I wouldn't be able to rest until I had answers, so she called today rather than waiting until Monday (or she just wanted me to leave her alone....). The blood tests were all positive, yes, but the positives alone do not indicate a diagnosis in the absence of other lab tests being negative and my symptoms not quite matching up. Alright, time to move on! 

The tests do scream that I have an autoimmune disease, which of course we knew. The rib cage pain and difficulty breathing are easily explained by a complication of AS called enthesitis. The limb heaviness and walking through mud feeling is, sadly, explained by Fibromyalgia and Myofacial pain syndrome- diagnoses from years ago apparently getting worse. The neurological symptoms can also be explained by an autoimmune disease in general and possibly worsening Fibromyalgia. The crushing fatigue is explained by both diseases, which is why it is so severe. 

The plan is still to go off the immunosuppressants for a little while, while I try to get the left spinal fusion to heal. It is all such a tornado of issues right now, we decided not to start any sort of new treatments until I get the surgery site healed and figure out how I feel without the immunosuppressants. So.....once again we spin around in this place I seem to live called limbo. 

This experience, however, made me revisit my feelings about all of this. I've always had an "It can always be worse" attitude about my health. But, lately it feels like my body is winning the battle between it and my soul and it has been getting me down. More down than usual anyway. This experience reminded me that it can indeed always get worse, even if you don't think so, it can always always be worse. When things get bad remember the good things you have. Focus on what you started to forget. Your friends, family, home, kids, the weather, anything you love that lifts you up each day. The reason you hang on.

Now, don't get me wrong, just because it can always be worse doesn't mean it doesn't suck, and it does not mean you cannot get down or have negative feelings about your particular situation. You are entitled to your emotions and bad days, this chronic illness stuff is not for wimps. But, don't stay there. Don't let bad days turn into bad weeks, months, years, a life. We need to remind ourselves to separate our illnesses from who we are. It's not always easy when who you are inside is trapped on the couch or in bed because of the illness, but that doesn't negate your worth. Being in bed doesn't change who you are deep down, it only changes what you can physically do. I'm not always good at believing this either. I'd say this is one of my biggest problems actually. Our (definitely mine) self worth is very much tied to what we "do" on a daily basis: go to work, take care of kids, clean the house, do the dishes or the shopping, cook meals, go walking or hiking, play a sport, and on and on and on. Sitting looking at piles of laundry that need to be done knowing they're going to stay there, looking out the window at a sunny warm day knowing you won't be enjoying it today, having a list of a million small things around the house that need to be fixed and knowing you just can't do it, watching your kids play together wishing you could play with them, none of this is good for self worth, and it definitely creates anger and frustration. Where does that anger or frustration go? Our illnesses aren't tangible things we can blame or punish because only we feel the pain and symptoms, no one can see them, and they are such an intimate part of ourselves it's hard to separate. So, instead of blaming something or directing anger at ourselves, we need to figure out a way to turn it around. 

Thinking about a potentially life threatening and damaging disease being added on to my diagnosis list pulled this all forward. My relief at the lack of this diagnosis is tangible. I can grasp onto it and make this what lifts my spirits. For today. 

Neurologists, rheumatologists and orthopedic surgeons, oh my!

When we last saw our heroine she was lying in bed (what!? No, can't possibly be...oh wait) fighting a bout of asthmatic bronchitis. I'm happy to say without much fuss, other than copious amounts of medication and a trip to urgent care, it was defeated.

Sooooo......where should we start?
I went to see my spine surgeon for my follow up, and his news was annoyingly bad. The fusion on the left side of my spine isn't healing. It has been determined that a year ago when I tripped on a bottle of bubbles the kids left on the floor, causing blinding pain and two ER visits, I broke my bone graft. The theory is it had started to grow to the bones, but when I fell I snapped it off and now because of that, it won't grow back and heal.
To solve this problem I was given a spine growth stimulator- an electric pack I strap to my back once a day that shoots electric pulses into my body to stimulate the cells that create bone.
Cool, huh? It would be really cool and super easy if it didn't come with the requirement to not put any weight on my left leg for 8 weeks. Yep, the walker is back! I was forced to get a more rugged "off roading" style, but it's still a walker. I don't love the walker. But.....
"So, if the bone growth stimulator doesn't work, what then?"
Dr B gestured to the poor skeleton man hanging on his wall "Oh well then we open up your back so I can see the joint, scrape it out manually and basically start over, only this time it's open back vs non invasive".
"Old school style"
"Old school style" a nod and a smile didn't make me feel any better about a 6 inch incision across my back and another 8 weeks in bed.
So while that was quite motivating to do what I'm told, I'm still finding it extremely difficult to keep my weight off of that leg. I don't need to be reminded of what's at stake. That doesn't make it any easier to chase after a preschooler with a walker....

Luckily, that's not the only health issue consuming my mind! Bringing us to specialist #2. New symptoms involving balance and vision issues, numbness and weakness in my limbs got me a free ticket to a neurologist! Exam, MRI involving a cool cage around my head and 6 vials of blood later....he ordered more tests. Three more tubes of blood and I was rewarded with two positive tests for Lupus. This all earned me an all clear from MS, the main concern, and a pass back to rheumatology. They're a little like a basketball team, and I feel like I can hear the crowd cheering as I get passed back and forth.

My rheumatologist is fantastic. She's warm and kind and compassionate, she has a daughter the same age as my son and we laugh about discipline and the craziness of 3 1/2 year olds. In this appointment however my usual sunny disposition was severely challenged by a conversation about severe fibromyalgia and Lupus. She leaned more toward severe fibromyalgia at that point in time because of my lack of the skin manifestations of Lupus, and she was concerned that the blood tests were false positives due to the nature of the test ordered and preformed. So, she ordered more sensitive and specific tests and said goodbye with a tentative explanation of worsening/ more severe fibromyalgia and "as you know there are no treatments for fibromyalgia." I took the box of tissues she'd given me as my battle to keep the tears away failed at that last part and proceeded back to my good friends at the lab.
"There are no treatments for the pain and fatigue you have". "It sounds like you are doing everything you can.". "I don't have anymore answers for you."
All of these things ran through my head as my heart was strangely numb walking to the lab to hand up 6 more vials of blood. "These tests will give us a clearer picture regarding lupus, but I do not expect them to come back positive."


That day I was numb. Sometimes that happens as a coping mechanism I guess. My brain and heart just turn off and I just sit or lie in bed basically starting at a wall. Picking up my kids and being mommy, including dinner, baths and bed as my poor M had to work late, was yet another one of the hardest things I've had to do. "Mommy's fine. Just tired.". "We're driving through a take out place what do you guys want?", "No honey, no more books, let's just get tucked in...". "Let's just do a super fast bath". Got me through to bedtime and thankful oblivion.
The next morning my glass was back to half full and my attitude was reset. Fibromyalgia is not damaging or degenerative, Lupus is; fibro is not going to damage my kidneys or heart, lupus would. So, even though there is no obvious treatment for my symptoms, I tried my best to focus on those good things and get on with my life. I'll get through the next few weeks on the walker and then i'll figure out how to make me feel better. More exercise, different supplements, acupuncture, yoga.... Etc etc. There are always options, I just need to dissect it and rearrange the pieces to figure out what they are.

Then the blood test results came back.
Fully expecting a negative result like my Dr did, and having resigned myself to a false positive on the first and second tests I had to blink and

double check the results when they came back positive again. They came in on Saturday and my rheumatologist's assistant called immediately Monday morning to set up a telephone appointment with my Dr, odd for her as we usually communicate through email. The appt is next Monday. So, here I sit and wait patiently.
Who are we kidding, I've already emailed her to ask about the results. It's annoying and obnoxious, but we're not talking about a hangnail here, we're talking about 3 different positive tests for a major disease. Right? Yeah ok, it's obnoxious. I'm ok with that right now.

That leads us to this moment. She hasn't responded yet, so here I do actually sit and wait and wonder. Not my strong suit, but hey I can't do anything anyway since I have an electrical pack strapped to my back I'm not allowed to move while wearing, and am not really even allowed to get up.

To be continued......

Small victory for fireworks and family

It's the 4th of July and we spent the day on the water with good friends eating, kayaking, swimming, water balloon fighting, talking and drinking. It was gorgeous and incredible. 

I sadly felt my body begin to fail about halfway through. But, this is not a diatribe about the frustration of chronic illness or a story about how wonderful, supportive and amazing my friends are (and they are!). No, today I have a story about perseverance and a small victory. 

I sat in shade from the bright, hot sun at a long table full of friends listening and laughing when I felt the familiar feeling of my body starting to just shut down. I excused myself to the house to lie down in the living room for a bit hoping I caught it in time and could rest the clock. The kids, ours and friends, were all playing and having a blast and M was relaxing and enjoying himself. I really didn't want to be the cause of that all ending early and abruptly. So, I sat in the living room with the teenagers and smaller kids and started to feel the familiar dread that comes with the "it's not getting any better lying down" realization.

I was driving home that night so I started to worry about getting us the hour home safely and was constantly assessing my body's attitude toward me this day. 

Friends and my darling hubby, M, came to check on me. To the friends there was an endless stream of "I'm fine"s and "don't worry about me"s, but hubby knows me better and just said "do we need to go?". I insisted no though he looked unconvinced. I wanted to give myself some time to hopefully pull it together, and was determined not to be the party destroyer for my family, as I destroy so many things in their lives. 

I'm happy to say it paid off! M took the kids for a walk, before which I told him I didn't think I was going to make it until sundown (930pm) for the fireworks, but by the time they got back my body was pulling it together! M came in and sat down and said "oh you have color in your face again". Ha! I asked if I'd been pale and he said "oh yeah, sheet white". So, even when I try to hide it he knows. This also explained why he seemed more concerned than usual about my need to leave early and me driving, etc. 

Now the whole point of 4th of July and of us going up to our friends house on the SF Bay was to see the fireworks and my determination to not make my family miss them actually paid off. We stayed until the very end, the kids were happy and crashed in the car. I didn't feel the greatest driving home, but I did it and it was fine.

This may not seem like a big deal to so many of you and it shouldn't really. It's ridiculous that it is such a big deal to me, but in my world this is huge. It's normally huge but lately it seems I've been having more days where I feel like my body is beating my soul, but not today sister!

Soul: 1, body: 0. 

Take that!