Status report

Hi all! So much has happened but I feel like first I need to give a status report. I keep talking about tests and symptoms, but I think it's unclear what is going on... Unless you go waaayyy back in the posts I haven't explained in a while.
So the big picture is I have an autoimmune disease that attacks the joints of my spine and the place on my vertabrae where the tendons attach (entheses). This autoimmune disease is called ankylosing spondylitis and the inflammation at the tendon site is called enthesitis. This also attacks the joints of my rib cage making it hard and painful to breathe.

The AS went unchecked for 4 yrs due to misdiagnosis and in that time destroyed the joints connecting my spine to my pelvis. Because of this the pain in that area was/is intense. The final attempt to alleviate this excruciating pain was to scrape out the joint, insert a bone graft and bolt the joint together (2 separate spine surgeries with 6+ month recovery each). This didn't exactly go as planned as the bone graft broke in one of the joints. We are waiting to figure out what to do about that.
*The AS and enthesitis are what causes the "broken glass in between all of my vertabrae" pain. As well as the "labor" pain in my lower back.

I also have fibromyalgia. This used to be very mild, but since developing AS and having the surgeries it has become quite severe (it is triggered by physical trauma). One of my Drs is still searching for other causes of some of my symptoms just to make sure the fibro is what is causing them.
*This is what causes the all over pain. It feels like Charlie horses all over your body on really bad days. Every single (my "normal") day it feels like I am getting the flu and walking through 3 feet of molasses. It's awful and exhausting. My diet helps this a lot but many things out of my control trigger flare ups (the weather, poor sleep, not resting when I should, etc). Sometimes it hurts to have clothes touch my skin or my pillow touch my face like I have a bad sunburn. As you can imagine this is exhausting.

Now, what happened neurologically?
In Oct/ Nov I had a "neurological attack" that the neurologists and rheumatologists were confident was MS. It was awful- numb feet, trouble walking, unable to function because my brain and body basically just shut down. Bugs on skin itching that caused massive bruising. I was a zombie and barely functional. My kids went to daycare and with friends and friends nannies for several weeks because I couldn't drive or even get out of bed. It was horrific and I am terrified of it happening again since it came on quite suddenly.
This they have determined (for now) was a rare, severe neurological reaction to the medication (immunosuppressants) that I was on for the AS. Needless to stay we stopped that medication so currently I have nothing treating the AS which, yes, means more pain.

The MRI that I had was for lumps found in my lymph nodes. There was a concern of lymphoma because of my history of cancer and the medications. Thank God the mri came back as benign lumps, signed off on by oncology and interventional radiology. That was not a fun few weeks.

So we're back to trying to figure out the debilitating fatigue and intense leg pain. I have good days but every day my body just gives up in the afternoon/ evening and just wont function any more. Technically these two symptoms can be caused by the two conditions I already have but since these are new symptoms they want to investigate further. Sooooo I just got home from more blood tests and with a diagnostic medication (a medication that you take and if it worls- you have the condition, if it doesn't work then you don't).  We'll see what happens!

That's where it all stands now. Those are not including the severe anemia, complete lack of a thyroid necessitating constant monitoring and medication, autoimmune dry eye (restasis is fabulous!), Chronic gastritis/ulcers preventing me from taking ibuprofen! 😢, vitiligo, Osteopenia and more little annoying things that really don't matter. All of these conditions are being managed and don't prevent me from doing anything or living a normal life so we see them as seriously no big deal.

So you can see how it is all a balancing act. When I have JUST AS pain it's bad but easier to push through and manage mostly as long as I can do what I need to do (Medication, lying down, heating pad, ice pack, sometimes sitting). Fibro is  a little  harder because it feels like my limbs all weigh 100lbs each. It gets tiring very quickly and some things are worth pushing through the pain for and some things aren't.  Nothing much helps this except lying down in bed. My brain gets tired too. Yesterday for example I was playing dinosaurs with my son and eventually my arms couldn't even hold up a toy dinosaur anymore and all I could do was smile.
*Once again these symptoms are still being investigated.

So that's the story. Not complaining just explaining so it doesn't seem so mysterious when I have a bad day or when I accomplish something that seems small but to me and my family may be huge.

Not comforting in fact, but worth it

Ok yeah, there's nothing comforting about this pain.
Pardon my French but holy shit it hurts. It all hurts. You know when you can't lie still because it hurts but moving hurts too? And when you've taken meds but they aren't working and now you're just out of options? When it hurts to hold your phone and 3 ice packs cover your body.
It's so bad I can't even cry. Or breathe. And I feel like I'm going to puke.

It was all for a good reason and worth the day at the pool swimming with my kids. It felt good to help set up and be involved in our neighborhood pool party and sit out in the sun for hours with nothing to do but laugh and chat with great friends. It was worth it.
I tried to fight through today and go back to the pool. I made it a little over 2 hrs before I just had to pull the rip cord and come home. It was once again worth it to lie in the sun listening to my book watching my kids and husband play.

But sometimes I wish my days didn't always come down to "was it worth this misery?"

Tomorrow I have an MRI that will be 1 hr and 20 minutes in the tube. Right now I cannot even remotely imagine how I will lie still on that hard metal table that long with this level of pain, so here's hoping it subsides!

My old comforting friend, pain

I've been in pain for 8+ years. Sometimes crippling and expletive causing, sometimes annoying and exhausting, but it's always always there. "If I'm awake I'm in pain" is something I told a friend early on and remains true.
Several months ago (8ish?) I developed all of these new symptoms of weakness, numbness, skin discoloration, severe cognitive impairment, skin crawling itchiness causing deep bruising and on and on and on.
Out of all of these symptoms I'd have to say the weakness and fatigue are by far the worst and hardest to fight through.

On days when I feel numb, or utterly disabilingly exhausted, or can't string a sentence together or read words, I feel so awful and generally out of sorts I just need to lie down and check out so my brain can reset or chill or whatever it needs to do in there. I get anxious in these times because if my brain isn't working right then I don't like to be away from home or away from M. He's my safety net. The symptoms come on so suddenly that I get scared to be away from home alone with my kids and have them hit. These are the really bad days.

So, on days where I don't have any of these symptoms, but only pain, it's actually and oddly comforting. Like an old blanket or sweatshirt. I've been living with it so long it truly is my

norm, so when I have "just that" it's as if I feel "normal". Even if it's severe and I can't move. I feel like my brain is saying "oh I know this. Ok I know how to deal with this".  Don't get me wrong it's awful at times still but I get it, I know how to make it better generally- though I may not always like the solution. It's just "back to normal" in my world.
 Weird huh?

Maturity: good or bad?

"You don't make it to everything, but you make it to a lot of things and I love you for it."

This came from my almost 8yr old right after an out of the blue "thank you for making it to open house every year" as I was putting something on her shelf.

I was stunned and speechless.
1. Because of the utterly mature topic for an eight year old to randomly bring up
2. Because I didn't realize she noticed
3. Because my heart broke a little for her and for her brother that me going to a school open house was such a big deal

Tonight was my daughter's open house at school. Evenings are particularly difficult for me lately because my energy and stamina just get zapped so easily, but there was no question in my mind that I would go to open house. She's been working for months on a diorama and report on opossums that was going to be debuted tonight and her art work would be on display. Plus this is the night where she gets to really show me her world. I love open house night actually. Apparently though there was a question in her mind as to whether I would go. She's completely justified in thinking that too. That's the sad part for her really. She knows no different since I've been sick her whole life, but she is getting old enough now to understand that I'm not like "other moms".
So here we go again... "is this overly mature comment something good? Does it mean she will be a mature, empathetic adult? Or is it incredibly sad that an eight year old has to think this way? Is she being forced to grow up too fast?" Honestly I believe it is secret option F: all of the above.

But geberally I think "no no it's fine, they are happy, well adjusted kids who are just mature for their ages" and then I see stuff like this:

and I think "holy hell, I've destroyed my children".

I've said before and I'll say it again: the hardest part of all of this is the effect it has on my kids and my husband. My daughter is independant and mature beyond her years. Anyone who knows her knows this. There's no way to predict if this will be a good or bad thing in the end. It could just be a story to tell her therapist..... Fingers crossed!

Could ya just...!?

I ask my body on a regular basis things like "could ya just let me get through this lunch without excruciating pain?", "Could ya just not give me grief over standing to talk to someone for 15 mins so I don't have to draw attention to myself by getting a chair and sitting when everyone else is standing?", "Could ya just pull through this one thing and I promise I'll let you rest after?". Today's "could ya just....?!" Is a little more angry and defeated than normal.
"Could ya just be strong for me so I'm not a burden to my family at this FUNERAL, so we can all focus on mourning and celebrating and comforting each other and not on ME and MY needs!?" Could ya!?
There is nothing worse than being a burden to others, in my opinion. To have your body not allow you to do what needs to be done. The worst type of burden is when you are somewhere to do something for someone else or be there and support someone else and have your body fail completely. The best case scenario in this situation is that you cannot do what you came to do and want to do for that person. The worst case scenario is that that person or those around you need to then help you and focus on you when it should be all about them. This is the worst of the worst.

Today we are in LA for the funeral of my dear young cousin. The funeral is tomorrow. Today I went to lunch with a friend and seem to have brought my pain level to the point of no return in doing so.  I cannot stand for more than mere seconds before literally collapsing in pain. Right now it's about pain management any way possible so I can make it to the first event tonight which is a dinner with 20 people.
So my "could ya just" is a prayer today that tomorrow will be ok. Just tomorrow body. You can fall apart again on Sunday if you just pull through tonight and tomorrow. So could ya just do that for me? Pretty please?

Tears by the road side

When you are taking an eight hour road trip to the funeral of someone you loved dearly the circumstances will never be wonderful or ideal. When your body decides to completely fail you halfway through the drive and you think "my goodness I can't even rely on my body to drive myself to a funeral", sometimes quick and quiet tears in the gas station bathroom and an existential argument with yourself is the only way to get through.
Then you come out of the bathroom with dry eyes, walk tall and be thankful you aren't alone with your kids on this trip, thankful for your husband and partner in life who quietly takes over and a life that allows me and my body to fall apart without my life following suit. Just my sanity.
My husband will never know what it means when he does small things like looking up the hotel address and getting directions on his phone in case/ so I could sleep and he wouldn't need to wake me (as the one knowing where we were headed). And like holding his arm in what could only be an uncomfortable position so I could hug it, because man did I need comfort right then and he knew.
This weekend will suck for many reasons, but there are always snippets in your day and life that will (should, must) shine through. Even when you are crying in a gas station bathroom on the side of a highway there will always be a silver lining. Sometimes it's so small you can't find it, but it's there. It has to be there or why are we even here?

A reminder of things I thought I knew

My best friend bought me this coffee cup just because it reminded her of me.

I guess maybe the view my little world has of me is different than I thought. I guess maybe people see me differently that I see myself.... 

That's nice to know😊

And it's even nicer to have amazing friends that remind me of these things when I forget.

The Easter Bunny kicked my ass

Today has been....a day. Two days in one I suppose.
Sometimes what it means to have a chronic illness is parades and Easter egg hunts in the morning with tears and misery in the afternoon.
I try to stay positive, but today I can't. And what I need to get through to my heart is that that's ok.
It's hard to admit that and to feel that. It feels a bit like a war in my chest. I believe we've discussed this before.
Today was a great great day. This morning was amazing fun with friends at the park where my son got to be in a parade. They did an Easter egg hunt and played on the swings and monkey bars with classmates and old friends. On the way out we got popsicles and tacos from the taco truck. It was warm and beautiful. Idyllic. I made it, I loved it and I was blissfully happy for those almost 4 hours.
I could leave it at that with a remark about how determined I was to do it and how I'm "paying for it but it was worth it!" And I am and it was. But I think feel like in order to learn to be okay with my bad days I need to not always put a happy face on this chronic illness led life we lead. I like to write about my victories or learning from my failures, but today I need to be completely honest and show you what the positive attitude, pushing through the illnesses, pushing through the pain, pure stubbornness and getting out there to do what I WANT to do with my sweet kids and my wonderful husband, rather than what my body wants me to do, looks like after the fun. What it feels like and my "right now" after the Easter Bunny kicked my ass.

No, there is nothing you can do but thank you for the thought 😊

Yes, I will be ok

No, this is not at all unusual or unique. My husband came in to ask if I needed anything and then went back to working on the house because this is just our norm.

Pizza was ordered for dinner.

I am going to try to sleep now. It is 6:40pm.

That's a day in the life of a chronic illness battle.

But it most definitely WAS worth it.... 

Riddle couldn't be solved

For those of you with an interest in how I solved my riddle.... I didn't.

The first thing to go was my shower of course (thank goodness for dry shampoo!), Then picking up R since my friend usually brings her home on Weds anyway. I was only getting her today because of the dentist, so I was thinking I could just be late to the dentist and have my friend bring her home. Next was a different friend picking up B while she was out running errands (which B was very excited about!).
The treats were easy to solve with cookies at the house and the passport pictures can easily be done a different day (as long as it's before Monday).
I got to about 45 mins before the dentist appointment and realized there was just no way it was going to happen. Yes they charge for cancelling so late, but sometimes money just isn't important.

The good news is staying in bed all day seems to have helped and I feel better today! So there's that at least.....

Riddle me this...

So here's my pickle today....a riddle for you. I need to get b at 1130, then R at 1. Take them both to the dentist 130-3 and then to fed ex for passport pics. And I, of course, promised them we'd go to the cafe after for treats if they were good (and coffee for me of course) But every time I move I

whimper in pain and cuss loudly. So how does Kim get from point A to B to C to D to E to F and finally back to A..... oh and I haven't showered since Sunday so that probably needs to happen in there somewhere too.
Aaaand....go.
Anyone?

In hindsight (cuz that is where I Excel with 20/20 vision!) the prettiness of my house is not worth this level of pain and fatigue. Screw you house numbers and light fixture and hose holder and doorbell and paint touch up! No matter how awesome you look (and they do...)
Ok....
Typing that out out made me
realize maybe I did just a smidge too much (but I took breaks!!!). But that was two days ago. And I was feeling good that day! Come on already!

So...

Vs 

Are my choices today.... except in reality I don't actually have a choice.
So, into the shower I go.