Mrs POTS is a bitch

Continued...
My Drs are fantastic and have really stuck with me. Specialist after specialist, emails, phone calls, tests and more tests. Nothing. Well nothing that was causing what I was going through (they tacked on a couple more autoimmune diseases so if you're counting I'm up to a solid 4).

Now, autoimmune diseases they generally come in "packs". They like company. So, yes I have many diagnosis now, but it is for that reason. It's all just cause and effect in a vicious circle. It is nothing unique to me at all. If you meet a human with just one autoimmune disease be surprised.

But, I think we might actually have hit on something. I kept telling my Drs there was "something else" going on. The utter weakness in my limbs to the point where I drop things and feel unstable walking, the complete lack of balance to the point where if I don't pay close attention I will run into walls or tables, the feeling that my body is shutting down and I better get to bed fast, the complete neurological overload when there are too may lights on, or the TV is on too long, or I stare at a computer too long ;) I was convinced these were something else, something we hadn't discovered and out of desperation I went to my GP to beg for genetic testing, to tell her we were moving because of this and to basically just say "I'm not willing to give up, there's something else wrong and we need to figure out what it is." This Dr suggested I monitor my blood pressure...... and there you have it.

This new diagnosis is called Dysautonomia with postural orthostatic tachycardia syndrome (POTS). Basically all of these fancy words mean

that my nervous systems are not communicating with my body to make it do the things it should "automatically" (Autonomia) do, like make me breathe, control my blood pressure and heart rate, control my digestion and so on. Anything your body does without YOU telling it to is part of the autonomic nervous system. When that fails, which apparently mine has, it wreaks all sorts of havoc as you can imagine. The havoc it seems to be wreaking on me is that my circulation is allllll out of whack. My BP can't decide what to do and when I change positions it has a tendency to drop, causing my heart rate to go through the roof and that feeling that everything is going to shut down soon. I do feel like I am going to pass out A LOT, the world goes black or starts spinning but luckily I have not fully passed out yet. (fun conversation to have with your 8 year old by the way- "Ok if mommy passes out don't be scared, just call daddy"). Another issue with your circulation/BP and heart rate not working the way they are supposed to is crushing and debilitating fatigue since your blood isn't getting where it's supposed to go! My brain overload, tremors, heart palpitations, constant fatigue, weakness, headaches and so much more can all be explained by this one word dysautonomia.
Now, I have been here before, I'm not throwing any parties yet, but I FEEL like this is right. I FEEL like this is that something else I kept telling my Drs about.
As a trial while I go through tests with a cardiologist she gave me a medication to increase and stabilize my blood pressure. As you can imagine this carries with it some side effects and management but the relief was instant. Not completely, not even 25% honestly, but enough that I noticed. Enough that it really reinforced that we are on the right track. Increasing dosing seems to increase symptom relief.
But, like I said I've been here before. Grain of salt etc etc.
So, I'll keep you posted. As much as my body will let me anyway.

Staying alive takes a lot of time

This is a long one, folks since I'm so behind. This will hopefully explain why......emotionally.
This has been a really tumultuous time. I'm not going to lie or sugar coat. That would be a disservice to people suffering with illness, whether mental or physical.
There are mountains, valleys, caverns and trenches in life. I think we can all agree.
This has been a trench. A long, long very deep trench. I understand it is very hard for people to understand how health can fail so quickly and completely, but as a healthcare professional I can tell you that it's actually quite common. People joke about the fact that I have so many diagnoses and that is perfectly fine, humor is my savior, but in these jokes sometimes I hear a note of disbelief. Not necessarily that I am lying, but maybe my Drs are wrong, or maybe it's not that because how can one person have so many things wrong? Well, here I am.

I have an amazing support system, I've said it before and I'll keep saying it. If I have a problem I have a number of people I can rely on, not everyone can say that. But to that end I'd rather not need that support system. Yes, I am lucky to have it, but what if...what if I had a life that didn't require it? What if I could trust my body enough to make plans? To know that tomorrow morning I WILL be able to make it to my daughters assembly where she is singing.
Do you know what it's like to never know if you will be able to get out of bed from one hour to the next? To never be able to say "Yes, I will do that with you", to never buy tickets to anything ahead of time, never have goals for your day, never make plans, to not even know if you will be capable of something as simple as getting in a car and driving 3 miles to pick your kids up from school?  To 100% not trust your body not to fail you? This is my life.
This is where this trench has led me. My attitude about all of this is still overall positive and I think my life is still pretty amazing. Which is why I fight everyday to get up, but rest enough; do what I need to do, but not too much; research research research every illness and treatment I have or want to discuss with my Dr. I fight to eat in a way that keeps my body happier, to walk around the track at my son's school every morning so that my body doesn't decondition on top of it all. I fight everyday to do my physical therapy from my spine surgeries so that those are still successful. I fight with my Drs, my body, my socks, my clothing, my pouf in my shower, my eyes, my hands, my left leg, my back. I fight.
So, yes my attitude is still good, but sometimes it gets real.
I get tired of fighting. Doesn't happen often honestly, but it happens and more often lately. I get down and frustrated and confused. All of this is par for the course. But what do you do when this all makes you start to question why you are even on this earth? Why you were put here to just lie in bed and disappoint the people you love over and over again. To burden your friends and family. What use could there possibly be for this life? We get one life, one body and I am trapped in a very broken one that I can't return or exchange. So, when it doesn't work what do you do? I don't have an answer other than: fight and smile.

The technical health stuff of late is that about a year ago I had what we now know was a severe and rare neurological reaction to a medication I was on. If you've read this blog in the past you may remember. It made it impossible for me to get out of bed other that the bathroom 10 feet away. I had to go back to using my wheelchair or cane, I couldn't think straight even forgetting how to read at times and I laid in bed staring out my window for weeks at at a time. My team of Drs was so convinced that I had MS the neurologist ran every single test he had for it, therefore it took months for me to get a proper diagnosis. And it really is just a diagnosis of exclusion.
The reason I bring this up again a year later is to be honest and up front and tell you all that it never really got "better". Many of the symptoms went away so I did have an improvement, but something lingered. My days in bed went from 7 days a week to maybe 4-5. Most days I was still in bed but I was able to pick my kids up from school and do the bare minimum to take care of them (During my worst time they went to a friends nanny and daycare everyday). Once the neurological symptoms started to subside we really expected the progress to continue, but it just....stopped. I still was unable to get out of bed more often than not and I have not felt "good" or "normal" in over a year. Yes, for the entire last year. Every day. I feel best in bed in a dark room. And that's the truth. So now, for us it has gotten so bad that we are planning to move wondering if a different climate might help. Most days I feel like all of my focus and energy is just on staying alive. Making sure my kids are safe, and that's it. My entire world has had to be my health and I have been forced to back away from a lot of things and probably people in order to just survive. It sounds dramatic, but ask anyone who truly knows me especially my husband. It's not dramatic.

This has brought up a lot of emotions I really haven't dealt with before. A lot of thoughts that had never surfaced. My earlier question of "why do I even exist?" being the spring board.
The vast majority of my life I have always been firmly on the happy end of the spectrum. Ridiculously happy at times. I believe in being positive, I believe kindness is the most important thing a person can possess, I believe in focusing on what you have not what you don't, to accept people for who and where they are and I have been blessed with the strength and ability to change situations that I need to. But, when you spend close to a year in the dark in bed listening to life go on around you and without you, your place on the spectrum becomes unstable to say the least. I have found myself slipping further and further down it with each inconclusive test, each negative result, each day I had to ask for help for something simple, each time my kids asked me why I couldn't do something, go somewhere with them or even just get out of bed to come to the dinner table. Each time my husband kissed me goodnight at 7pm to go watch TV alone. Again. Each day my husband came home from work exhausted and still had to make dinner and put the kids to bed because my body wouldn't work. It's almost like a little bit of your heart gets damaged each of these times and eventually it just doesn't heal. Eventually it stays this broken part. How many times can your heart break and you keep your positive attitude or your sanity? 9 years. That's how long we have been living with these illnesses. That's when I developed my first autoimmune disease that would forever alter the course of my and my families' lives.
Now, I will pick myself up and I will fight. I will keep going because I just wasn't made to give up, but I find that it's harder or further to pick myself up and the fight is getting harder. And sometimes I wish I was made to give up, just for one day. Just one little day to have a break from pain, illness and heart break. Just one.
The good news is that I think they may have finally gotten to the bottom of the problem. Good or bad I think we've got it....

Continued....

Expectations and opposites

Hello! It's been a while!
Life gets away from us all I suppose...

I'm circling back around expectations in life again.
People with chronic pain live with disappoinment and failure in situations non

chronic illness sufferers don't even think about. Wheeling a suitcase. Standing in line. Sitting at a restaurant. We live with the expectation that we can do "normal" everyday tasks as easily as the average person. Whether these expectations come from ourselves or others they are still there.
For everything humans do in life there is an expectation. "I expect to get up and walk to the kitchen for a glass of water". For the average person this expectation never manifests itself concretely, right? You just get up and get a glass of water. It doesn't require thought. This is where the line between chronic illness sufferers and "typical" or average health people gets very very sharp and dicey. This is where people truly expect you to be able to function and cannot understand what it feels like to not be able to just get up and get a glass of water.
This is where those who love or care for people with chronic pain need to "live" and be aware of. It's not usually the big stuff that gets us down. If someone says they can't go on a mile long walk because of their illness or pain people are more likely to understand that. That level of strain is comprehendible. Even those of us with CP don't feel as bad about backing out of something overly physical. But not being able to get off the couch to turn the fan off (because you're freezing in 80 degree weather) is difficult if not impossible to understand unless you've been there. Everyone gets sore or achey from too much activity at some point in your life but you know it's temporary, you know what caused it and chances are you can still get up and move, you just don't want to. The opposite of those three statements is the truth chronic illness sufferers live with their entire lives. It's permanent. You often have no idea what caused this particular flare. You cannot get up and move no matter how much you want to.

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.