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! 

Warmth, confusion; humidity and heartbreak

My husband is a rockstar in so so many ways. He's patient and kind, compassionate and funny, smart and sexy, aaaaannndd he's a rockstar at work! This last one comes with rewards! This year that reward came in the form of a free trip to Cancun, Mexico for 6 days without children. Yeah, I know.

So this was me, for 6 days. It was heaven. It was relaxing and warm, we got to swim with dolphins, swim and hang out with wonderful people from his company.
Most important of these for the purpose of this blog was the warmth. The temperature hovered around 86-89F and the humudity stayed at 80% or more the entire time we were there.
For some reason this combination was magic for my body.  My pain level that is usually a 5 or above (See chart) and prohibits any sort of non
essential activity, was at a 3 the entire time. This may not sound like a big deal but it is the difference between "no I need to lie down", "I just can't move today" and "I'm so exhausted" and "Yes, I do want to walk along the beach with my husband in the moonlight", "yes, I do want to play pool volleyball"(!) and "Yes, I do want to swim with dolphins". I even said to M on the flight home "I felt like the old Kim again".
It was incredible and confusing and heart breaking.
Let me explain.
I am not complaining about our trip, quite the contrary, it was perfect. It couldn't have been better. I was more relaxed than I've been in maybe years, and we actually got to spend time together as a couple and not parents for the first time in years.
What I mean when I say confusing is the obvious "Why do I feel good?". It's confusing. Is this the power of suggestion? is it just because I am relaxed? the sleep? the weather? and on and on with the worst being is it really as bad as I think it is normally? I would wake up in the morning waiting for my body to come awake and let me know where and how bad the pain would be, but the usual "Don't even think about getting out this bed sister", was merely "here's a little achiness and a bit of stabbing in your back, but if you get up and move around you'll be ok".
I would go to the beach figuring that would be my only activity for the day, planning to go back early and rest while M spent time with the others, but that didn't happen (until the last night, but that was more just desire to stay in the room honestly). I went to the beach for hours when M was in morning meetings, then moved to the pool where we spent hours talking to friends laughing and sitting on an uncomfortable lounge chair with no back, then we went back tot the room where I showered, did my hair and makeup, dressed up in my new dress and high wedge heels and we went to the big banquet, where I sat next to his boss and chatted like a normal person unphased by the day's activities. In my real world, one of these things would be all I could do for the day; one would knock me down for at least half of the day, if not the next day too. In my real world I would have been doomed by the time I hit the lounge chair just walking down from the room. Walking in sand is generally a challenging and destructive activity for my body, this trip it was not even a small issue. Lying or sitting in one place for too long is avoided at all costs at home, here it was my activity every single day as I listened to the surf and read an entire book from cover to cover. Reading traditional books takes an extremely ridiculous amount of time at home because the body positioning required limits how long I can read in one sitting.
It was a glorious glorious time.

Heartbreaking may not make sense, but it is because of that simple phrase, "I felt like Kim again".
At the time I didn't think about or acknowledge the gravity of this statement, and even when it hit me I tried not to dwell. I wanted to be able to tell myself that it was just a phrase and it meant nothing other than what it said. I did feel like my old self again. The old Kim loved lying on the beach reading, probably as much as anything in the world. The old Kim loved being active, playing games like pool volleyball. She loved exploring, like we did when we drove, in torrential rains, to the town of Cancun to wander sopping wet through the streets. Many of you may not see the significance of the statement. You may think I'm reading too much into something innocently said. But remember, we are in the world of chronic illness and pain now. Words have different meanings here. Phrases said in the world of the "typical" carry new weight in the world of the chronically ill. And yes, just in case you were worried,I will tell you why.
"I felt like Kim again" doesn't merely express how I felt in Mexico. It shows that, as much as I thought I had, I still have not come to terms with this being my life now. I haven't accepted that I am never going to be that Kim again; that my life has a different look and feel now. I had actually begun to think I had accepted this new life and believed I was in it making the most of it. I falsely believed I wasn't longing for the days before I got sick, I wasn't secretly holding out hope that one day it would magically disappear; that the treatments were going to eliminate the diseases despite what my Drs and education told me.
Apparently I was wrong in these beliefs. At least partially. This made me realize that I do still harbor those hopes, and that I am still not 100% in this new existence and this new (but definitely not improved!) body. And true to form, this glimmer of hope I experienced in Cancun has me once again looking for a solution just like I did in the beginning. I have now looked up and charted the weather and pressure in Cancun while we were there and compared it to the weather where I live. I have seriously considering moving somewhere I can feel like that again and more often. It's delusional to say the least, but hey it happened then, why can't it happen again?

I enjoyed Cancun as much as humanly possible, and I am extremely grateful that I did feel good truly enjoying the vacation and taking some of the burden from my rockstar husband for a few days.
I am thankful I could remind myself and my husband of the days before this endless stream of Drs appts and tests.
But, with that came the caveat that I would take a step back in my constant pursuit of acceptance of this Kim. Believing there's a purpose to these challenges and being truly happy in this new body is apparently still beyond my reach.
The psychological aspects of chronic illness still rear their ugly head, and just when I think I'm on my way to beating them, or at least living with them side by side, they pull ahead in the race and I'm left standing here wondering what the hell happened. It's difficult to realize and accept that not looking back is much much harder than you think, and moving forward is painful, causing acceptance to always be just barely out of your grasp.
So.....is there a sideways?

My lungs felt left out

So, little man has been coughing for a while (several times in my face) and suddenly I lose my voice on Sunday. By Wednesday it's clear it's getting worse, not better, and I call my nurse to get an inhaler for what I know is asthmatic bronchitis. I've had it before, usually once a year. This time, however, I'm on the famous, duh duh duh, immunosuppressants. 

So, like everything it seems lately the complication and PITA factor goes way up. Wednesday night is spent in urgent care with my ever present and supportive husband, while our amazing neighbor sits at home with our sleeping babies. 

This Dr at least gets it. It doesn't take a lot of explanation and clarification to get us where we need to be. Anything involving the lungs they immediately freak out and check and watch for pneumonia, and any sort of illness is treated to the Nth degree. But, at least he agrees to wait on the chest x Ray since I  reached my max radiation dose like 2 x-rays and a CT scan ago. An hour later we bid farewell to sweet, funny and compassionate Dr Peterson with antibiotics, an inhaler, prescription Mucinex, narcotics to suppress the cough reflex and prescription Tylenol for the chills and sweats I'm lucky enough to be experiencing as well. I don't get fevers, my body indicates infection with chills and cold, clammy sweating. It's very attractive. 

And here we are again, spiraling down and out of control because of a tiny little thing called bronchitis. Anyone else could stay in bed a few days, take some cough medicine and move on. I get antibiotics, ordered to rest, get much sicker than a normal human with an immune system would and suddenly lots of Drs pipe up with opinions and questions. Do we stay on this immunosuppressant? Change to another? I must be monitored closely until my next dose in two weeks. Am I getting better or worse on these particular antibiotics? Drs check in daily to make sure I'm alive. No joke. 

It's a big ol pain, but I can be grateful for my wonderful and watchful team of Drs. We've been lucky in that area for the most part. 

And once again I'll beat this stupid germ causing me spastic coughing. I just wish once I beat one thing down nothing else would pop up for a little while! 😋

Until then though, I'll be right here. Again. Because man this bout of bronchitis is making me really really tired. And, you know, I live in this bed. Good thing it's comfy! 

The worst part

So, today was one of those days. One of the days I just couldn't get off the couch. Today there were aches all over and exhaustion that makes me put off going to the bathroom as long as I can so I don't have to move any more than necessary. If you've ever had the flu, I mean the REAL flu, it's that feeling minus the stuffed up head. It's walking through 2 ft of mud with heavy limbs; feeling like your arms are 25lbs weights. Pain pills don't help, caffeine doesn't help, rest, sleep and on and on don't help. This feeling comes with the added bonus of being unable to get my body warm. My thermostat says it's 76 degrees in my house, yet here I am in 2 pairs of socks (one of which are for snowboarding), fleece pants, a tank top, shirt and sweatshirt under 2 down comforters. And guess what? Yep! My feel are still cold. It's kind of funny really. I feel like asking my feet "what the hell do you want from me?!".

But, no, that is not the worst part of all of this.
The worst part of all of this is the mom I am on days like this. I don't want to say "the mom it makes me turn into" or "the mom it has made me" or any of those descriptions, and the distinction is important to me. I can own my faults without excuses. The diseases themselves don't make me into anything and certainly not permanently. What they do do is create symptoms that make it tough for me to be a mom, or at least the mom I want to be.
So today we tried to go outside and play, we tried to play at the dining table and we ended up watching TV. I lost count of the episodes of Blaze he watched, but am happy to say the little one plays very well on his own and went off to play with his toys periodically. I also appreciate the fact that every cartoon made today is educational and he learns something from them. Then my oldest (almost 7) came home. There was homework to do, she needed to clean her room and put away her laundry, but instead she played with her brother in the backyard while I was on the couch listening to them and trying not to fall asleep. I just didn't have the strength to get her to do all of the things that needed to be done (though homework of course was eventually done). Our rule of "work and chores before fun" just didn't, couldn't, apply today.
Then daddy came home and rather than a home cooked meal like I usually have in the works the kids were eating cereal and he had to fend for himself as here I am in bed at 7:30. Again. No he doesn't mind at all, and he doesn't expect half of what I expect of myself, but I feel sad and guilty when I can't take care of anything and make his life a little easier. The house is a mess, the sink is full of dishes and a million projects need to be done around the house. But I stayed on the couch.

During the time I spend on the couch I do get bored. People always ask me what I do. Days like today are difficult since with a 3.5 yr old in the room I can hardly watch TV, so I play games on my phone, or do the grocery shopping on my phone, or read on my phone...you can see the pattern. This obviously creates the illusion that I'm just always on my phone and that's why I don't/ won't play with my kids. But I assure you, it's the other way around. Most adults get it, but how do you explain that to kids?


So, the hardest and worst part of all of this is what my kids see, comprehend, think, feel and will remember. Eh, no big deal right? I lie awake nights worrying about this.
We all feel like we are just doing it wrong sometimes, right? Parenting is hard! Kids are tough little creatures to mold and form and raise. They are also sensitive, loving, resilient and amazing little creatures that we are lucky enough to get to raise and mold and form. I know all kids will have baggage and no parent is perfect, I get that, I really do, but what days like today do is prevent me from being the mom I want to be. Not the greatest parent in the world, not a mom by anyone else's standards, but the one I pictured myself as and strive to be. Today I am short tempered, I yell more because I'm frustrated that I can't do what I want, I have no patience because I'm tired and in pain, and I can't play with them, and sometimes don't even want to because I'm just so bloody tired. It rips out my heart when my baby boy asks me to play with him and I have to say "mommy can't" yet again, because I know soon he'll just stop asking. It breaks my heart when I get impatient and yell and I see the hurt look on my sensitive and loving daughter's face. I go to bed wondering if that's a memory she'll keep, and if my little boy feels like mommy doesn't want to spend time with him.
Even now I have a lump in my throat because I just couldn't be a mom today. Yes they were fed and dressed, she went to school and he was excited to stay home with mommy. Yes, their teeth were brushed, their baths were given (by daddy) and they went to bed warm and snuggled. But what effect will today, and the so many others just like it, have on their emotions, feelings, foundation? If it was one day in a hundred, the answer would be "not much", but these days are part of their norm, so that is a valid question and concern. I also understand that I probably won't ever know.
My hope, and the only thing that keeps me going, is that no matter what happens they know I love them more than anything in this universe, that I have and will continue to fight through the pain and fatigue and sickness as much as I can- for them and their incredible daddy, that I am always here for them no matter what and that my heart breaks when I can't do things they want or ask of me. Sometimes mommy can't play dinosaurs or trucks, sometimes mommy yells when they don't do what they need to be doing, because sometimes mommy can't be the mommy she wants to be. And that is the very very worst part.

Tricky questions....

People tend to ask the same or similar questions in regards to my illness....

"What does it feel like?"

"How are you?"

"Is it really that bad?"

"What do you do all day in bed?"

And my favorite statement.....

"Well, you look great."

today I feel these questions can be and are maybe best answered with pictures and my requisite quotes, so here goes:

This is what it feels like

 
                            This is how I am

It's really that bad

What I do all day

What I want to do  

         

     What I try to actually do/be

Because in my reality.....

So, really, I'm great. Most days 😉 because even though I feel like the first few pictures, I believe that my purpose and the purpose of all of this is to learn and grow. I need to focus on the positive and the amazing amount of great things I have in my life. Because what kind of person would I be if said "well I have an amazing husband who I love more than life, 2 wonderful healthy kids, a huge group of caring and thoughtful friends, a supportive and helpful family, and a warm comfortable house in a fantastic neighborhood, but there's this one thing that isn't so great [meaning my health] so my life sucks and I'll just be a whiny bitch because of it." ?
The answer for me is: not the kind of person I want to be and not the example I want to set for my children. My mountain may be a little taller or steeper than some people's, some have much taller ones, but we ALL have mountains. And  they're waiting for us every day when we get up! It's our choice how we climb it and how we let that mountain affect our lives.

What's your mountain today?

I just love this one

Battles vs the war

This is one of the worst and most difficult parts of chronic pain. It's 12:23 am as I write this, exhausted beyond belief. My brain is tired, my body is beyond tired, yet here I lie in so much pain mere breathing is painful.
I've stretched, I've changed positions, I've tried heat and ice, I'm listening to my "be strong" music😉, but nothing is helping.
To be specific my spine feels as though it is grinding together like rocks with sharp edges and no padding. My ribs become very inflamed when this happens so taking a deep breath is difficult and requires concentration. A regular breath is just painful.
I'd like to rip my spine out of my body at this point in time because there are no more medications I can take right now, no more positions or things I can try. I'm stuck. I'm unable now to move due to the pain, and it's beginning to cause a lump of nausea in my stomach and throat.
During my days I try to hide what I can, be strong and make it through for my kids, my husband, my friends, family AND myself, but late at night when there are no more options for pain relief and you realize all you can do is lie here and live with it, that's when reality sinks in. No more distractions, no more acting, just you and the pain. There have been more nights like this than I will ever count. I won't count them because the point is just to get through it again however you need. Being mad, sad, frustrated or depressed, even tears at moments like this don't show weakness, it's a battle, not the war, and this battle sucks. But I don't dwell on how much, or what it means. As soon as your brain acknowledges this level of pain as a never ending cycle and not just one bad night, when you acknowledge that this is part of the life you will live this time around on this Earth, then you give the pain too much power and that, my friends, that's when you've lost the war.