Stanford you have been forgiven

I have to say my first experience with Stanford specialists left a lot to be desired. M and I walked out of the building shell shocked, flabbergasted and disillusioned.
Today they have redeemed themselves.
I spent 5 solid hours of my day in the Autonomic Clinic of the Neuroscience specialty of the neurological department at Stanford hospital. Not to name drop or anything. Sounds fancy doesn't it?
This is one of the top clinics for Autonomic nervous system disorders in the world. These specialists are few and spread out internationally.
I'm extremely lucky to live 20 mins from this clinic and to have Drs who referred me to see them.
The testing was mildly brutal I must say, but the technician and I became friends over my two and a half straight hours in his lab so it ended up being enjoyable getting to know and chatting with someone new. Which is one of my favorite things of course.
He was thorough and apologetic when his tests were dizzying, nauseating and difficult but we got through them all.
He mentioned probably five times over the course of hours what a positive person I am in the face of a gazillion issues and what a great attitude I have and he even said thank you for that! It was lovely. It made me feel bad for him a bit dealing with unhappy people all the time? so I asked him:
"Do you get a lot of people who come in here just miserable and grumpy and complaining?"
"Oh yes we do, and I understand that as well. They are dealing with horrible stuff. But you remind me it's all about perspective in life. You change your perspective just a little bit and it changes everything. So thank you for reminding me of that." Deep thoughts in the Stanford Autonomic testing lab. And I must say that's one of the biggest compliments I have ever received! I really appreciated his candor.

When I left my new friend, after convincing him to go to Hawaii on vacation and take his parents to help with their new 6 month old girl, I was off to the Dr to interpret the findings. (And I could finally get coffee after fasting for sooooo long!)
This time this Dr, same one as before,  was more personable, provided relevant information and explained things thoroughly. I left there feeling good knowing that I had been thoroughly tested, poked, prodded and examined and confident in the information I now had. And reminding myself I should know better than to judge by just one visit.

The news isn't great. I didn't leave happy with the actual information, but from the perspective of a chronically ill person answers are awesome, good or bad really. It's a twisted world we live in.

So for those of you who are paying attention to/interested in the technical  medicals side of things he is very confident that the lupus diagnosis is correct because the problems he found are only caused by a handful of things- one of which is Lupus. (The others were instantly ruled out actually). So what it is boiling down to is systemic Lupus with cardiovascular Autonomic neuropathy and orthostatic hypotension.
Quite the mouthful huh?
Basically it's:
Lupus- attacks the connective tissue and
It effects all body systems -systemic
With
Cardiovascular- the heart and blood vessels
Autonomic- the part of the nervous system that controls automatic functions; in this case mainly heart rate, heart filling and emptying and blood pressure
Neuropathy- nerves gone wrong (diseased, malfunctioning, dying, etc in my case malfunctioning because they are being attacked by my immune system)

So because my immune system turned bad and is attacking me (the Lupus) the nerve that controls my heart isn't working, so it doesn't tell my heart to fill and empty when it's supposed to, to pump the blood out when and how it's supposed to or not to beat so fast when it doesn't need to. And the nerve to my blood vessels isn't telling them to constrict and relax regularly and when they need to (so my BP is inconsistent- orthostatic hypotension means my BP drops when I stand up). So my blood isn't going anywhere it needs to be when it needs to be there if you think about it.... Lol.
This explains why I stutter and can't think straight so often. There's no blood in my brain! I wonder if I'll be smart again if I hang upside down.... Hmm food for thought.

So that was my day. Wasn't a bad day at all. The sun was shining, they gave me a coffee and lunch break so I walked to Starbucks. I met some nice people, learned some cool stuff about the nervous system and got some answers. All in all a pretty good day.

What is that? An FYI post

Many people have asked me what Lupus is. For those of you who know who Salena Gone is or Sarah Hyland may have heard of their kidney transplant. Those were due to lupus. It is autoimmune and attacks your connective tissue. The most concerning place this happens is the kidneys. It was the kidney test that really set off the current alarms. We're still testing and trying this lupus treatment before there is any final decision on the diagnosis, but we're moving closer to a specific diagnosis (my current diagnosis is undifferentiated mixed connective tissue disease which means it's missing a few things to be lupus, but is very similar. Lupus is more dangerous than undifferentiated which is why the diagnosis is hard to pin down and is the focus of all of the testing).
More to follow soon.... I hope!

Holy rain Batman!

It has been raining off and on for weeks now. Cold, so damp it seeps into your bones. This, as we know, is the absolute worst thing for my stupid body. Hence the big ass move to an island 2000 miles away. Everything hurts. I'm exhausted.
Yesterday my Dr actually prescribed naps. Naps!  Every day at the same time no matter what. So, today I fought and fought to not lay down until noon- our designated nap time- and now I'm lying here utterly miserable. This cold damp rain is really knocking me out!

40 days until my body won't have to deal with freezing dampness and cold rain!

Confusion, relief and nausea

So, I bet you thought we were done with that whole Lupus thing huh? Funny.

So many symptoms so little time, so I'll cut to the chase and say lupus was never really taken off the table but "undiagnosable at that time". New symptoms necessitated 6 vials (normalizing chronic pain) worth of blood tests and two seperate  urine tests days apart. All precautionary. Of course until the results came back!

Results are concerning and enough to begin lupus treatments.

Today I'm too tired and emotionally off to finish this post how I'd like, but suffice to say side effects of these new treatments may make them unfeasible for me. I'm giving it the best try I can since the meds take months to get into your system and take effect.
So for now managing nausea, dizziness and exhaustion have consumed my days these last couple of weeks. I'm getting better at it but I'm going to go now, recover from this post, talk to my Dr and sleep to prepare for commitments tonight that I will not miss.

Aloha! 41 days to relief?

I have no pictures of my birthday

Because I spent the entire day asleep in bed.
Why that day? As I told M "my body doesn't give a shit that it's my birthday". My daughter made me a brownie cake for breakfast (our family tradition), I woke up long enough to eat some of that, open the gift from my little loving family and went back to bed for the rest of the day. My kids went with their dad to get Legos so they would have a good day and I saw them all again for a quick picnic dinner in bed with me. I haven't seen them since then.

It's not the birthday really, at least not today, because I don't have the energy to care. But what I do seem to have the energy for is lying in bed, today in tears, waiting impatiently for my Dr to call for our scheduled phone appt so I can go back to bed.

My husband and kids make my life work and worth it. I'm lucky beyond words to live the life I live. I truly never forget that. But like anyone some days are better than others right? But I'm still here so
Happy birthday to me! 😁😍

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.