Wait...wait a minute.. seriously what is going on?

Another unsolvable puzzle.
Soooo remember how I said the specialist approved IV hydration when I'm desperate? M was there, he heard it too! Well he didn't exactly relay that to my Drs. In fact, the opposite he apparently said.
And remember how I said they were going to give me prescription stimulants just so I could get out of bed on bad days? Yeah not so much that either.

The conversation this week went something like this:
Me to Dr #1 (GP): so can I get the stimulant prescription we discussed?
Dr#1: yes but you have to get it through Psychiatry

Me: ok, hey psychiatrist (dr#2)  can I get the ritalin we discussed?
Dr #2: yes but I need to check with Dr #1 to make sure it doesn't conflict with other meds you take.

me: ok...she'll say yes

Dr#2: ok Dr#1 says no. Risk of heart issues down the line. I will research and get back to you.

Me: but... she said... Whatever. Fine.

Me to Dr#3(cardiologist): ok so my prescription for a stimulant is held up right now pending approval. In the meantime how about we try that other med that increases my blood pressure to see if it works better than this one on my energy level? For the record I still think non pharmaceutical IV saline is worth a try...

Dr#3: you need to discuss Ritalin with your other Drs, I can't prescribe that. And I'm going with your specialist and agree IV saline isn't a good idea.

[This is also when I realized my specialist lied to my face]

Me:......

Ok.... What about the medication I actually asked you for?

Dr#3: I don't like prescribing that medication because it has potentially serious side effects. You can try it but I don't recommend it and won't give it to you without more blood work.[sends link with all heinous side effects listed]

Me: ok..... So can I have just the IV hydration for now then?
Dr #3: no
Dr#1: no

So, for those of you following this circus they won't give me a stimulant to help me have at least a tiny bit of energy because I may develop a heart issue in 20 yrs.
They won't give me the other BP raising med because it has dangerous side effects.
They won't give me simple salt water, used to hydrate millions of people daily, into my veins because.....



Crazy making isn't it?
So my psychiatrist is researching other options for stimulants....and we're waiting.

In the meantime Dr #4 (rheumatologist): wants a full panel of blood work due to new symptoms and this crazy debilitating fatigue. Maybe she'll do something.

The curse of multiple illnesses isn't the illnesses themselves it's the fact that each illness comes with it's own specialist. Argh.

Eggs with stitches

Persistent postural perceptual dizziness (PPPD), sensory ataxia, orthostatic hypotension, dysautonomia, pots.
Alllll of those added at stanford and not one has a proven treatment other than the pppd.
They're going to give me Adderall or Ritalin just to help with energy. The med to raise my BP seems to be helping the symptoms it should help. Otherwise "sorry, there's nothing we can do."
Super specialist sent his eval to my drs and we will go from there. 

 The orthostatic hypotension is being helped by midodrine to increase my BP plus hydration packs and 12,000 mg of sodium. Yep. I can't eat that much so I take salt tablets. 

For the persistent postural perceptual dizziness (PPPD), which is sort of like chronic vertigo, there is something called vestibular rehab, which means they need to retrain my brain that the world isn't moving even though I feel like it is. This explains why I randomly fall over, have no balance or equilibrium and am dizzy when in a car or moving a lot.

The sensory ataxia (with my eyes closed I have no idea where my body parts are in space and I can't feel all of my feet) there's nothing to be done but honestly that's not a big concern unless I have to take a drunk test. Cannot touch my nose or walk a straight line lol. Mitch said it was painful to watch me try to grab one hand with the other with my eyes closed and miss by a good 6 inches.

But the main one that he theorized could be causing the severe fatigue and body failure and weakness is myalgic encephalitis/ chronic fatigue syndrome. There's no fda approved treatment for it so my Drs will give me stimulants like Ritalin or Adderall just help the symptoms. The main cause as far as they know is inflammation of the brain. Nothing you can do about an inflamed brain apparently but it explains why avoiding inflammatory foods like gluten, dairy and sugar has helped so much. I don't actually meet all of the criteria, but he seemed to think that's what it could be.  It's basically being sentenced to bed for the next 30 yrs. I was really trying to avoid this particular diagnosis, and I honestly do not think this is it. Like I said I don't meet the criteria, plus my neurologist already told me that's not it and my fatigue can be explained by the dysautonomia/pots. The reason for the fatigue isn't my main concern. A treatment is. So the prescription uppers like adderrall or ritalin should help as well as the fact that he authorized hydration by IV when needed. 

I had hoped that he would have answers regarding treatment but all he did was confirm my current diagnoses, add a few and say basically that what I was doing/told to do by my kaiser Drs was what I should be doing. 

So, I realize now it was silly of me to put so much pressure on this appt. I was devastated when we left, but now I see that it confirmed that my Kaiser Drs are awesome and that all Drs are just human.

Broken eggs

It is finally my appointment with one of the top Drs in the world for autonomic dysfunction/ failure! I've been waiting for months and all of the insurance and referral paperwork is finally good.
This Dr happens to be at Stanford in one of the few autonomic clinics in the world, lucky me it happens to be a mere 20 minutes away!!
So, tomorrow I visit the autonomic clinic in neuroscience of the neurology dept at Stanford. Lots of fancy words to hopefully mean they'll know what to do for me. And yes, my eggs are all in this basket. I learned

not long ago to not do that. To never get my hope's up. No expectations and you can't be disappointed. Or more accurately heart wrenchingly devastated.  But all of those fancy words and the research I've done on this clinic makes me honestly think they will be able to give me some sort of option other than to take a medication that is on the verge of being discontinued by the FDA and "carry Gatorade with you and eat more salt". Yep, that was actual advice from Drs for the fact that my blood pressure plummets when I stand up.
You know its funny, I'm so anxious for this appointment but at the same time almost don't want it to happen because this is it. The best if the best. If they can't help me no one can. So if I haven't gone yet, there's still that magical chance that I will actually be able to feel better someday.

So will my eggs break? Or.....

Stay tuned.....

Managing expectations - part 537

One of the most impossible things to do in life I think is manage expectations, but especially In chronic illness. Not the expectations of others as it might seem. Not even my expectations of myself really, though those are in my thoughts and heart at all times. The expectations I find it hard to manage are the imaginary ones. Ones that literally only exist in my head.
I make up expectations that others have of me. I think a lot of us do this, I'm not unique, but this is the latest and truthfully most ongoing thing I think I deal with.
I believe I know what other people's expectations are of me. I'm wrong. And the line between my expectations of myself, which are always unreasonable high; and my husband,

Ok anyone who knows me knows why I picked this one, but it's still true 😂

friends' and children's expectations is very blurry for me.
I don't have any great answers or insights on this. I wish I did. I do know that until I can reconcile my unreasonable ones and the ones I make up and understand others actual reasonable ones (and often even irritatingly low ones) I can't be at peace with being sick all the time.

None of this makes sense. I know. It's crazy and irrational to impose my made up expectations on other people, and frankly extremely unfair. My expectations of myself are super hero high, as my husband likes to tell me, but that shouldn't make me frustrated and worry about not living up to them for others sake's
right? Yeah, I'd laugh if it wasn't what is bothering me today as I sit in a dark room waiting for M to get home from work after picking up our little boy. A little boy who asked to be picked up early but I just couldn't (in all fairness though even when he asks to be picked up early he gets mad when I actually do because he has so much fun at his after care program. He's very indecisive sometimes lol). Meanwhile I'm trying to think of an easy dinner to make or have someone else make and listening to my daughter play with her friend.
Definitely not a new situation, just the current one. And it's reinforcing my arrogance in thinking I know my husband is expecting dinner when he gets home and was expecting me to pick up B and I'm failing him right now. Thinking my daughter is in her room playing with her friend thinking her mom is lazy so I'm failing her too. Thinking my little boy expected me to pick him up and is hurt and mad that I didn't, once again failing. Logically and cerebrally I know I'm not failing "them", and that none of them are thinking any of those things, but damned if I can get that through to my actual thoughts and emotions. See, I've taken my expectation of me and made them THEIRS. How unfair and cocky right? Yep.
I am expecting to do those things and not being able to do them is making me sad for my family and angry at my body and we know, from vast experience, that that is a complete waste of everyone's time and energy. Yet I can't seem to get out of that loop.... apparently I'm really slow in this area....

I get by with a little help from my friends....

Yep, I'm going all Joe Cocker on you now. No not Ringo, Joe. Look it up if you haven't heard that version. It's amazing and was played when our bridesmaids and groomsmen walked down the aisle at our wedding for a good reason.
Friends are the family you choose. True friends are the ones who lift you up just by being there. Who understand you and don't care if you are in your pajamas with frizzy hair drinking coffee or wine or dressed up out for a night on the town. Happy or sad, chatty or quiet. I am lucky enough to have many of these kind of friends. And I was lucky enough to have hung out with some of them recently. Few things are as recharging as a night with friends laughing and catching up. I needed it. I didn't realize how much. I was scared I wouldn't make it, because that's always a risk for something planned in advance with my health, but the universe was smiling at me and I made it to our mom's night several nights ago.
This is a success story post and a reminder that bad weeks, bad days, even bad months can fade away when laughing with a friend. There's always a moment that will make you remember what life is about and how simple that can be. If you feel sick or nervous or tired or scared it seems far away when sitting with a friend catching up and telling "me too!" stories.

So with a huge contented sigh I went tobed that night. Yes in pain and exhausted. I mean it's not a miracle cure 😂 But with a big smile in my heart thanks to some special ladies who lift the spirit just by being them and remind me of my motto - simple pleasures can be found anywhere and are what life is about. Don't take them for granted.

Sorry, Elsa

Life is a series of choices right? We've all heard it and I happen to believe it. I believe I have a choice about almost everything in some way.
When those choices involved primarily just me they seemed fairly easy to make. When choices involve the rest of my family those valued options suddenly become terrifying. At least to me.
Currently we have made a plan to move in 5 months from SF to Hawaii. This decision began about a year and a half ago when I laid down in bed and suddenly couldn't get up for weeks, then months. It made us realize how quickly life could change and created fear in my husband and I that my health issues were only going to get worse. I remember saying, as I went through testing to figure out why I couldn't walk, move or at times read or comprehend the world around me, "if this is it then our life needs to change". We needed to go us on living life as if it was a limited commodity.
And so began the discussion, research and planning. Not only did we realize we needed to embrace life in the face of the uncertainty of it, but we also realized if we stayed here nothing would change. My health just didn't seem to be able to get better here.

Last year we spent a hefty amount of time travelling. It just so happened that births, weddings, family trips, work trips and more all fell within a 5 month period of time. It was a lot.
Every single place we went was warmer than it was at home. And every single place I was able to participate in life more.
[Background: It never gets truly hot here and barely even very warm. And if it does get warm it's for a very short burst of time in the middle of the day. The temperature can change more than 30 degrees in one day/night and quickly. And it's damp. So very damp. Our humidity level was 100% yesterday. But only 48 degrees at 3pm. It's the same idea as when it's humid and hot- the humidity enhances the heat. Well humidity does the same thing with cold. It takes the cold deep through your clothes and into your bones]

So we realized after 3 trips to warmer places that there was a huge discrepancy in how I felt physically in the consistently warmer weather vs here.

"And if you think about our annual trip to hawaii, you are always more active there.."
"I am. The heat definitely helps. The consistency of weather also I think. No sudden drops in temperatures there. Is it humidity maybe?"
"No, you felt better in Denver too.....Maybe we really do need to move"

The conversation to move went through several places, narrowing to Costa Rica and Hawaii for many reasons starting with the consistency of the weather. We happened  to have our annual trip to Hawaii after that conversation and once again the difference was obvious. Especially since this time I flew to Hawaii alone with both kids and still functioned better those first few days alone than I do at home with help.
When we arrived home the Change was instant. My darling husband came home from work the following day to me in bed and immediately said
"Ok which Hawaiian island can we afford to live on?"
And so the journey began.

Shortly after this decision started to become clear we scheduled a trip to the big island of Hawaii. M and I had been there but wanted to see it again with the eyes of "living there". After our time there we realized two things: I truly did feel better there regardless of sleep, help, stress or any other "vacation variables" and two: the big island was definitely not for us. 

For medical reasons as well as transition for the kids we moved our focus to Oahu just outside Honolulu. 

And we have a winner. And did I mention the fact that I have wanted to live in Hawaii for 30years? How does it feel to have a dream come true? Actually quite a bit scarier than one might think.... 

Pharmacy rollercoasters

So I get a message that my prescription is ready. Which prescription is always a surprise. I'm thinking it's the new medicatiofn called florinef to replace the midodrine to increase my blood pressure right? Ha!
I get there and it's my muscle relaxer, bummer. So I ask about the florinef because I'd like to have it today so I can try it first over the weekend when my husband is home. Guess what? It's backordered until Feb 18th!!!!! They have none. No Kaiser on the peninsula has any. At all. It's out of stock because everyone who currently takes Midodrine has been switched to it and the pharmaceutical company can't handle the new volume.
I didn't even know how to respond. I almost started crying. The pharmacist came over and the guy who's been helping me thru this bullshit asks her if there's anything else I can use. She says Sudafe, not without compassion. So I leave. Dejected and trying not to cry.
As I sit down in the car my phone rings. Its Kaiser! It's my friend in the pharmacy I just left saying "have you left yet don't leave! Come back!"
"What's going on?"
"We just got our shipment and opened it and midodrine is in it!"
I've been burned too many times before so I say "are you sure? Do you have it in your hand?"
I hear him mumble to the pharmacist to hand him a bottle. He laughs and says "I'm holding it right now"
"Ok I'll be right in"
I drag my poor 5 year old who has been so patient with these million trips to the pharmacy back into the building and into the pharmacy where the guy who called me sees me and laughs.
So, I've been given a one month reprieve....
We'll see what happens now.

Is this really happening?

Over a year of feeling awful. Over a year spent mostly in bed unable to move or think. Over a year of checking out of my life and avoiding things I love. Drs appts, tests and knowing something was wrong.
Something was wrong. Is wrong. It's called POTS.
My diagnosis did come with positive news. The medication they prescribed called Midodrine actually did begin to give me good days. Once I got to my full dose I began to have days where I started to feel cautiously human. Yes, I needed to hydrate, take my pills on time, eat more and rest more, but it was working. I just came off of 7 good days in a row. SEVEN. That's the first time in over a year I have gone seven days out of bed and able to function. Maybe my payment will be three days in a flare in bed, but it was becoming manageable and I saw a glimmer of a light at the end of that long tunnel.
I should know better by now. I really should.
They stopped manufacturing the medication. Of the three companies that make it two of them stopped and the other has limited supplies. For the whole country. I was only able to get four days worth from my pharmacy and was then abruptly told that was it, the manufacturer wasn't making it and he couldn't find any more in their pharmacy system. In checking my online pharmacy to see updates my Dr prescribed a new totally different medication and discontinued my midodrine Rx. So apparently I'm going to try that and just see what happens. No she didn't tell me.
Oh yes I'm serious. You really can't make this stuff up.
The new medication is meant to raise blood pressure like the midodrine does, but by a completely different mechanism. This mechanism (increasing the volume of fluid in your circulatory system) carries with it risks that were enough for my cardiologist to say he doesn't prescribe it and doesn't recommend it. Well, now that's all there is so he, and I, have no choice -risks or not.
It also carries with it a whole new set of lifestyle rules and changes to be made. Just as I was really getting a routine that, though a pain in the ass, really seemed to work.
Over a year in misery and finally some help only to have it abruptly taken away again.
I'm beginning to think they should change the name Murphy's law to the law of Kim's health.
I'm in shock and devestated. If that seems like an overreaction to anyone I want you to go climb into bed and not get up for a year. I'll talk to you then.

Heart breaking cardiologists

Ever had your Dr feel sorry for you when they tell you there's nothing they can do? It's not as fun as it might sound.
So, I'm through testing with the cardiologist. There is nothing wrong with my actual heart (which we knew, he just had to test to make sure).
We have landed on Dysautonomia with Postural Orthostatic Tachycardia Syndrome (POTS) and Orthostatic Hypotension. Quite the mouthful right?
Dysautonomia is a malfunction of the Autonomic Nervous System which controls all body systems that work without you telling them to (heart beating, lungs breathing etc etc). It has two branches: parasympathetic and sympathetic which control some of the same and different things and the same things in different ways. Got it?

You can read all about them by clicking on the link, but really it means my brain doesn't communicate with my body. It doesn't consistently tell it to breathe, move my blood around, pump my heart, digest my food, etc etc etc. There's a full list in the link.
This disease is frequently shortened to the term POTS because that's obviously a million times easier to say, but it is so so so much more.
The biggest concern medically and symptom wise right now is my heart and circulatory system. So off to the cardiologist I went for testing to make sure it was my nervous system's control of my heart vs. my actual heart. Yup! But when I asked him for a prognosis his face fell and he said "There is no fatal or awful medical prognosis (yay!), but that is easy for me to say, you are the one who has to live with it. POTS is tough, there is no FDA approved treatment and it is not studied at all. The real prognosis is that you will have good days, ok days, bad days and really bad days. You have to find a balance that works for you and make the most of your good days."
"But what about this medication that seems to be helping" I asked.
"It can only do so much and requires it's own side effect management. Regardless of the medication you will have bad days like you experience now and sometimes won't know why."
During this conversation his face fell and I wondered why I suddenly felt worse than I had walking in. Was he pitying me? He was fully acknowledging that this disease is basically just going to suck for the rest of my life and we can treat it and try to keep it under control but nothing will work as well as we want it to and it will never get better. He was telling me that yes he had an answer for me in terms of a diagnosis, but it didn't by any means come with a fix. Huh. I left feeling disoriented and sad, but unsure why until I realized he felt sorry for me. A cardiologist. I'm so used to Drs trying to keep me hopeful with the "Next treatment" and making me feel like I could overcome whatever with some other random trial of treatment, even though I knew that wasn't always true. Honestly, it was actually refreshing to have a Dr be totally honest and say "I can't do anything for you and it's going to suck. Make your good days good".

So, I take medication to increase and stabilize my blood pressure and I endlessly read and researched other treatments and lifestyle changes I could make. I am the lifestyle change queen after all!
Hydration at the right time, keeping my blood sugar level, eating more salt than you can imagine (actually taking salt PILLS at times), walking but not overdoing it and keeping track of my neurological status (because it gets overloaded easily by loud noises, bright lights or too much stimulation), all became unbelievably important in my daily life. If I miss a hydration timing, a medication dose, overdo it physically/stamina wise, don't eat enough or basically am not perfect in my regulation of my day it can trigger a flare up that so far seem to last for about 3 1/2 days. Once I'm in a flare up it's basically just hold on and get through because there's nothing I can do to get out of it as far as I can tell so far. I just have to wait it out in bed in a dark room. It's 3 days in bed and then the 4th day I can get up, but I still feel crappy. Day 4 (so far) seems to be the road back to feeling decent.

I requested a referral to a specialist and received one for the Stanford Autonomic Clinic in Neuroscience. I'm waiting to hear if I've been accepted into their program to see what they have to say. I'm lucky enough to live 20 minutes away from one of the few and best specialty clinics on dysautonomia in the world. I hope I can take advantage! Keep your fingers crossed.

That's a lot of technical information to take in I know. Now that we have an "answer" hopefully I can get back to writing about daily life with a chronic illness... But for now that's it. That's the latest. How I feel about it is complicated and changes daily so trust me you'll hear about it.

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.