Cabin Fever

January was an extremely rough month. The weather was much colder and icier than we’re used to, so we spent way too much time in the apartment.  February isn’t much better and we’re still generally feeling pretty stir crazy, especially Kris, since he’s so limited in what he can do.  I just started volunteering with a food pantry and soup kitchen on Monday mornings, so it’s been relieving to have some interaction again.  I wish Kris could get out and see people. We’re having a pretty difficult time emotionally. Being alone inside all the time leads to asking a lot of internal questions, reflecting on regrets, and worries about the future.

Kris hiding out in the warmth as I investigate this white stuff all over the ground.

We didn’t make it to Arizona.  I ended up taking Kris to the emergency room to have his heart monitored.  What would have been a 2-hour direct flight from Seattle was going to be 10, with connections from here – so I’d be much happier making that trip from home.  We already know that traveling makes him much worse, so I don’t know that he could survive another exacerbation of his symptoms – his last one was worst thing I’ve ever seen anyone endure.  Maybe it’s for the best we postpone it for now, as helpful as it would have been for us as we embark upon an independent review.

We’ve been able to initiate an Independent Review of Kris’s IVIG case which we hope we can use to persuade Cigna to cover his IVIG so that we can return home.  I can’t tell you how important this is to us, but also just how much stress this puts on us.  It requires a lot of our time to organize it and effort from our doctors to submit the data and the arguments for our case.  Please keep us in your thoughts, meditations, and prayers.  We would really like to come home.

Last, but not at all least, we lost our beloved pet rat Tuna and discovered that our other, Blose, is very sick and has limited time left with us.  I know this might not seem like a big deal for a lot of people, but they weren’t just rats or pets to us.  They were a part of our family and for two people who want nothing more than stability and the love of family & a home, they meant the world to us and were the glue that kept us together through hard times.  

H̶o̶m̶e̶ Alone for the Holidays

Recent inactivity has been due to our move. You see, much like Kris described, Connecticut sucked. We were a half hour away from anything, even the hospital. Our upstairs neighbors loved to do cardio between 10pm and midnight and when they weren’t, they were screaming at each other and throwing boulders (or something) in the kitchen. The local industrial facilities and plants definitely broke ordinances and jackhammered for hours starting 6am. We were exhausted and on edge. It intensified our homesickness. After driving back and fourth to Portland Maine a few times, that’s 8 hours round trip, we found a temporary sublet and I moved everything through our obscenely long hallway over the course of 9 hours and moved us in. Between trying to get settled in, not sleeping, my massive flare-up of Carpal Tunnel in both wrists (9/10 pain scale) and some sort of injury to both my index fingers I’ve been trying to avoid sitting at the computer. Unfortunately, I’ve still had to cook and do pretty much everything as normal so it majorly sucks for me right now.

Kris finished his first round of IVIG and is scheduled for his next infusions next week. His latest batch showed up the other day. Never ceases to amaze me how easy the process of getting it has been.

Other than that, we have DESPERATELY been trying to be normal. I’m able to walk places again, which is really nice. Grocery stores and coffee are only 4 minutes away. While this move hasn’t been easy or everything I hoped it would be, I have no doubt moving here was necessary to our emotional and physical well-being. Now we can do normal things – starting with getting a Christmas tree. I was pretty hellbent on getting a tree this year – We need it for morale now more than ever, something resembling a sense of home, so we even managed to go to Home Depot together. Felt good to just do something together.

I’m grateful to be in somewhere resembling Seattle again and while Kris is too, the emotional toll of all this is still very intense for him. He is really devastated. He wishes he could have a second chance at life and wants to go home – to Seattle, or back home to New Zealand. Because of this illness and our current circumstances, neither may be possible, maybe ever again. It’s really awful and I keep counting on stumbling upon a solution that doesn’t involve abandoning treatment. I’m trying not to get let down by this myself, but I guess being insanely busy and exhausted is keeping me from focusing on it too much. Unfortunately, as we get closer to Christmas, I’m finding myself sad that I couldn’t see certain people or have a nice holiday dinner with our loved ones. I wanted to have a couple of people over this year with holiday catering by Veggie Grill. But alas, it looks like it’s just and the rats this year.

Our friends back home and New Zealand knew how down we were and sent us a lot of wonderful gifts this year. I can’t even express how grateful we are to be remembered when we feel so alone and abandoned. While we’ve opened most things, we managed to put a few under the trees.

Jennifer sent us her amazing Sugar Cookies. Definitely a taste of home.

Earlier this year, I spent MONTHS on the phone with Mayo Clinic trying to get in to see their Neurologist who is world-renowned at treating auto-immune neuropathies like Kris’s. Unfortunately, because our new insurance policy is very restrictive and we can’t afford to fly to Arizona (not to mention, the physical toll) we will not be able to go. I was considering doing a GoFundMe so we could make the January appointment, but because we are probably $17,000 in the hole for our emergency room rescue dose of IVIG, we will need all the help we can get paying that off. It hurts me to think of all the effort I went through to get this appointment and I want Kris to get the best care possible. It doesn’t sit right with me but I guess we need to be realistic about the limitations we will now have for his care being in New England under this shitty HMO.

Meh. I’ll keep wishing for a Christmas miracle.

Vi

Real price

Here is how much IVIG actually costs when insurance pays for it. Kris gets four of these infusions per month at the moment, so the treatment costs insurance $16,000 per month, total. And that should go down over time as his dosage is reduced. That’s what insurance would be paying if it covered us back home. (Probably less since they have copays.)

Also so it looks like Swedish is billing us SIX times what an insurance company would pay.

Fear, Anxiety, Disappointment

This is a very personal and emotional post, so for anyone who only wants updates on Kris, please just go ahead and scroll through the pictures.

Kris was in the hospital twice in the past week. We just can’t seem to keep his symptoms under control anymore. The wait was over 3 hours because it was Thanksgiving. Their lack of blankets in the waiting area was complete horseshit, but there aren’t a lot of options for hospitals where we live.

If you can believe it, a month’s worth of IVIG was shipped to our apartment and left outside. I kid you not. No signature, nothing. 😒

(According to Swedish hospital, Kris is holding $80,000 right here.)

The complexity with which this very simple system operates is downright frustrating because, well, why couldn’t we just get this back home? I try to live every day being grateful I have a cup, versus worrying about it being half full or empty, but sometimes it’s hard to wrap my head around what we are going through. Things always seem so difficult, in regards with how we do most things in this country – but they really don’t have to be. I was watching an episode of X-Files last night, thinking to myself – why do we hate our jobs? Why do bosses have to be pricks? Why is the process for applying for anything so hard? Why is immigration impossibly complicated? Why are all these things the way they are? – They really, truly don’t have to be. (And yes, we are currently rewatching X-Files for the however many-th time. There’s not much to do when you’re housebound.)

Kris did start his IVIG. He had to do it at the kitchen island and in bed while our nurse sat on the floor because we have no furniture. He tolerated it pretty well thankfully – no side effects – but it’s intensified his fatigue. It’s 6:50pm as I write this and I’ve already put him to bed in the hopes that he will get some sleep. He’s not slept in days. Maybe weeks now. He’s physically and emotionally weak. He was too tired to eat dinner and wouldn’t let me feed him. He can barely move, he just mumbles when I ask him questions and goes unresponsive when I ask him to repeat himself. When I try to do something playful and funny to cheer him (well, mostly myself) up, he starts to cry and tells me not to pick on him. I feel awful.

I lost my temper and told him earlier how annoyed I am that he never has an opinion anymore about what I make him to eat, that all the planning and organization of our whole life sits on me now. I know it’s just dinner, but when your life is literally being trapped at home, dinner is a big part of your day. It made him cry because he is so exhausted he doesn’t even have the energy to think. I’m disappointed in myself and have spent the past months trying to be ever more mindful not to hurt his feelings. I just feel alone in the relationship sometimes and small things like his input on even the most mundane matters is really validating for me.

I’m not eating well or taking care of myself. I went to the gym once but have been eating sweets, processed freezer meals, and random processed snacks since the weekend before we left. I’ve gained back everything it took me 4 months to lose this month alone. I know it’s killing Kris because he wants me to maintain my health so I don’t damage myself and ruin my life. It’s hard not to be very conscious of that when your body is failing. But, for whatever self-imposed bullshit reason, it’s hard for me. Weight maintenance and stable eating have never been my strong points, childhood poverty and trauma tends to screw up one’s eating habits. Eating crap feels good and when that’s pretty much the only thing that makes you feel good, it’s hard to give it up. As for exercise, I’ve always loved the elliptical and small bursts of jogging, but the problem I have now is that as my heart rate goes up, it’s like the blood flow to my heart and brain intensifies my anger, sadness, and disappointment. It’s kind of like that saying that coffee makes you do dumb shit faster. Well, now I’m just moving very fast while being very angry! This isn’t because of anything he’s done or I’ve done, but just how unfair this is to us and to all disabled people.

First, you’re wearing yourself thin trying to find out what’s wrong – it seems like no doctors will listen or have a clue about anything. After 10 doctors tell you MAYBE SLEEP APNEA IDK LOL or misdiagnose you with this or that deadly illness (true story) you find a few good ones who have a diagnosis and a solution. So then, you’re fighting with medical insurance over a treatment that half a dozen doctors want you to get and the research is readily available on Google but for some reason, your insurance is so high and mighty that supposedly their damn doctors know better – even though your doctor PUBLISHED THE RESEARCH STUDY AND IS LITERALLY THE AUTHORITY ON THIS DISEASE – so they withhold your treatment to save money. Once you jump through every hoop presented, you’re miles away from things and people you love in some car dependent town 30 minutes from a decent grocery store or reputably hospital, only to now have to deal with trying to convince your disability insurance and social security that this incapacitated person who you have to to take care of is “disabled.” What a fucking joke. We are looking at possibly years of attorneys and political bullshit just to prove to a bunch of faceless document reviewers what I could show anyone in five minutes of being at home with us. We will not receive any income in the meantime, so all that savings that was meant to buy a house, take care of our family, generally live life, and sustain us into retirement will go out the window. It’s hard not to be disappointed that anyone has to live like this. That this is the standard. And the poorer you are, the worse it’s going to be for you. The level of human suffering I’m now privy too has definitely amped-up my existential dread and the ironic thing is, that before I met Kris, I thought the world was terrible and people were inherently evil. He changed that by showing me kindness and giving me opportunities I never would have had. But now, it’s not hard at all to see where I was coming from in the first place. There are a number of factors I can’t reveal in public yet that will probably make you think “Wow, that’s fucked up, why would they do that?” but the thing is, PEOPLE, like you and me, are making these decisions that are destroying lives and letting people die. Anyway…

Two nights ago, I made a quick evening trip to Stop and Shop to get groceries (mostly to get lettuce but they were all out). Yesterday, when the nurse came in to give Kris his IVIG, I stopped into Dollar Tree for 15 minutes while grabbing myself a coffee. These are the first and only times I’ve been alone this month. Alternately, I haven’t had any company other than Kris since we left Seattle. Kris’s condition and the loneliness it brings with it is so demanding that things like having to cancel my doctor appointment just to be available for him while he gets IVIG feels like I’m being robbed of my freedom and autonomy. I had planned to go to Trader Joe’s after going to my new doctor – it was the highlight of my week! But, he needs me. And he needs me around all the time, not only from a care standpoint, but because the illness makes him vulnerable and very lonely. He worries about things happening to me while I’m out. He never sees people because he can’t go out much. I’m literally all he has. I feel tremendously guilty for feeling this way because he doesn’t even get any breaks from this situation, ever. I try to be grateful that I can still ambulate and live without pain and have some control over my own situation.

I miss my friends. Instagram is my only remaining connection to some of them and truth be told, I find it a hard platform to be on. People are posting about their cool lives and the things they’re doing. I find it hard not be a bit jealous and resentful. To be perfectly honest, I never knew what jealousy was until last year. I couldn’t figure how people were buying houses and having kids while things kept getting worse and worse for us. I couldn’t understand why I was sitting in the hospital crying while people were posting vacation photos. It’s hard to see things like that when you feel like your life is over and it’s even harder to see the sad stuff. Even seeing friends complain ad nauseam about seemingly trivial things made my blood boil – I know everyone’s struggle is very real and different, but man, severe illness and death puts things into a kind of a weird twilight zone. Even sweet, sentimental intentionally tear jerking feel good videos can be too much because they’re always about families and love and things that fill me more with sadness now than awe. I literally cried for 20 minutes to Petula Clark’s “I couldn’t live without your love” watching the newest Heathrow airport bears Christmas video.

Feelings aside, this post barely even goes over some of the other legal/financial/ethical battles we are facing, there are things I still have to keep private because I don’t want to compromise some things we are desperately working on and wishing for. It’s hard. We are both very transparent people who give praise where it should be given and condemn bad behavior, but our hands are currently tied. Everything keeps coming back to the question of, why are things this way when they don’t have to be?

I hope things change soon. I would give anything just to see him be able to enjoy just one thing he used to do again. I want him to enjoy life again.

Vi

Misery, CT

This is Kris posting using Vi’s account.

We’ve been fighting to get IVIG on Cigna for months. It first started when we were advised high dose IVIG would be very beneficial back in May, but we were told there was no way Cigna would approve. So we sought out the experts in the condition in the hope they could get Cigna to approve. After four appeals with Cigna, they couldn’t.

Somewhat as expected, Blue Cross approved it in less than 24 hours. Right from the initial pre-authorization request. LESS THAN 24 HOURS. This is incredible, but the initial jubilation has given way, because this shows we should be able to have it back home. The stress of this forced move is immense, and I don’t know now whether I can stay here to receive the treatment, or go home, where we are comfortable, where we know our doctors, where our friends are around, where we have support. And just accept my fate and slowly get worse. Only I am reminded how hard that is when I remember the feeling of my skin burning like it’s covered in napalm as it was throughout most of October .

Two nights ago Vi got dizzy, her vision changed, and she collapsed and was taken to the ER. The local hospital here in our new town is really shit. It was hopefully(?) due to exhaustion and stress, she is feeling better now. Vi has never been to the ER as long as I’ve known her. I don’t know how we can manage her getting sick if she gets worn down being out here.

This shouldn’t have happened. Why does my wife have to collapse from exhaustion and stress so I can get a treatment that can just as easily be given at home. I’m so upset by the toll this is taking on her.

She’s been my full time caregiver for a long time now, without her I literally wouldn’t eat. We’ve had social workers at hospital ask us about hospice care and the like. But she’s managed because back home we had support. We had comfort. All we needed was within walking distance. We had the distraction and comfort of friends. We had the things to look forward to like the occasional breakfasts out on the days I was up to it.

But now she’s out here without that. We both are. She’s had to manage this end of the move into our first apartment, and then four days later pack everything into a trailer on her own and move us to a new apartment two hours away.

Our first apartment we picked unseen, it’s the same property company we lived in down in San Jose and in Seattle, and we’ve always had no problem. They allow transfers between properties so that’s what we did. But the apartment was disgusting. It stank like it had water damage or something like that and we couldn’t bare staying there, every time we entered we wanted to vomit. And we can’t risk anything making me sicker.

So we looked around quickly, but anything close to Boston or a nice town is insanely expensive and beyond what we can afford on our disability budget. So without much time to wait, we wound up having to move two hours away to a run down town, with it’s abandoned factories, and nothing else within 30 minutes drive. So everything she has to do now involves that much more effort too.

I can’t imagine staying here. There is nothing around. What am I supposed to do? Back home when I was up to it I could get in my wheel chair and go two blocks in either direction to a local cafe and feel normal for a period. I could meet a friend for coffee. I could zip over to the cinema and see a movie with Travis. Vi and I could look forward to the small familiar things we could do together, the breakfast spots we’ve always gone to, things like that. These things all mean so much when you’re sick and now we don’t have them.

So do your doctors. I no longer have all my familiar doctors who know me, who could order up help when I needed it. I can’t even get my hydration IVs set up now because it’s “too complicated” of a process for the doctors here to arrange, I was told to go to the ER.

There is nothing I can go outside and do around here. Our apartment is bare and we can’t really afford to spend much furnishing it so it will stay that way. I don’t want to be stuck in a bare apartment, sick, unable to do anything but listen to the upstairs neighbor, with nothing familiar to look forward to. I’m so very stressed and upset and desperate to get home where we belong and Vi is the same way. I haven’t felt this desperate for a miracle in all my life.

Navigating the path

It’s hard to know where to begin with this update, but let’s start here.  In recent months, Kris and I have visited the best of the best neurologists who all prescribed him IVIG/Intravenous Immunoglobulin/Immunotherapy (referred to as IVIG from this point forward).  Our prescription was denied, and denied, and again, denied by our insurance company, Cigna.  Cigna, Juniper’s main self-funded plan, believe that because Kris’s condition isn’t yet on the FDA list for diseases covered by IVIG, he doesn’t need it.  Never mind the fact that Cigna repeatedly denies treatment for many of the newer FDA-approved diseases stating they’re still too “experimental” or that a tremendous amount of medication prescribed isn’t being used for it’s FDA intended purpose.  No, the real reason they don’t want to approve it is because it’s insanely expensive.  (We have 3 active prescriptions from 3 doctors going, with 2 more who want to prescribe it, just to give you an idea of how well-researched this all is and that This IS a medically necessary treatment!) None the less, we started to reach out to lawyers, advocacy groups, the IVIG manufacturer, and Kris’s employer, Juniper Networks’ HR team.  We even reached out to KOMO News and Washington State Insurance Commissioner.

Pretty much everyone told us the same thing –

After months of being warned by our doctors, Emergency Room doctors, Cigna patients, and Infusion centers, we clearly understood that without some sort of divine intervention, Cigna would never approve the IVIG and that if there was any way we could switch to a different insurance company, we should do it IMMEDIATELY.  Doing what any desperate and motivated people would do, we reached out HR and discovered that open enrollment was coming up in just 3 short weeks.  We were told that Yes, we could switch to a Blue Cross Blue Shield policy in Massachusetts, but guess what, we have to go immediately because they can’t register us without an address there.  So – we did.

Within 2 weeks, I gave away all of our personal belongings – years of souvenirs and artifacts of our lives together – to friends.  After years of collecting Starbucks mugs from destinations we visited together, I parted with as much of my collection as I could to lighten the load.  This collection has since been discontinued, so I will never be able to get it back.  We downsized and downsized until it hurt, finding both of us crying over things we knew we didn’t want to get rid of, but knew that maybe a friend or stranger could enjoy it just as much as we did.  Let’s just say that the sadness and stress of everything we have been going through for the last year had been compounded by getting rid of everything we owned and moving away from our home and support system.  Some very generous friends offered to drive with us on the trip because they knew it would just be me doing the driving – Kris hasn’t been able to drive since Christmas 2017.   And so, we squeezed everything we owned into a 5×8 Uhaul trailer with the help of friends.

Just days before we were meant to leave, Kris’s symptoms really, really started to alarm me.  When I say that, I find it perplexing to say because over the past year, his decline has been so bad it’s really hard to imagine that could happen, after all, he wasn’t able to stand for 2 and a half weeks not long ago-  but it did.  He stopped sleeping for about 2 weeks, stopped eating for 3, had severe tachycardia which wasn’t improved by his hydration IVs, severe neuropathic pain, and some other alarming symptoms that I will keep private for the time being.  We already had instructions from multiple doctors telling us that if he got “really bad” or “worse,” we should go to the Emergency Room and ask for something called a Rescue Dose of IVIG.  In fact, it was noted in his chart that this should be done and yes, we were warned that insurance might not pay for this.  When we got to the hospital, we explained everything for what seems to me the hundredth time to the staff and after a couple of hours, a neurologist called to have us admitted.  They administered 1/5th of the Rescue Dose that evening.  I was crying tears of joy, updating my Instagram account, telling my friends that we were able to finally just get him one dose to temporarily halt this illness. I really can’t convey the relief that we felt – for the first time in a year, I felt like we had a future again.

Well, the next morning, no one showed up for hours and we started wondering when we were going to finish the rescue dose.  A doctor came in and explained to us that Cigna wasn’t going to pay for this and that he couldn’t justify keeping us there.  We were floored.  And crushed.  If you can remember the most disappointing day of your life, well, that was it for us.  We were discharged and sent home.  I finished packing everything up, put Kris in the back of the car, and with a friend, just drove for 7 days through the ice and snow.  The temperatures were freezing and some moments of the drive were downright terrifying.  On the road, we reached out to Juniper Networks HR literally begging them, crying, asking them for help.  They told us they wouldn’t.

Arriving last night, I sit here now in our mostly empty apartment, which actually has a really foul smell of water damage or something, realizing that tomorrow I have to continue driving around and looking for another apartment that is just a little more…comfortable, to put it nicely.  One is an hour away, another is 2.  Then I have to pack everything back up and move it again, by myself this time.  My back is killing me and I had to do a round of antibiotics during the drive for what was probably a stress-induced infection.  Blood is also coming out every time I blow my nose.  Honestly, I’m not great, but I can’t even imagine what Kris is feeling.  His pants are falling off of him from the dramatic weight loss and his eyes are kind of ghoulishly sinking in.  He’s developed some small lesions on his chest.

So, we thought that things would change once we got here, that we would have this new policy and that immediately, we could just have our doctor continue the prescription for IVIG.  Well, turns out the situation is actually quite absurd, redundant even   No one explained to us that in order to continue to see our specialist, we need a referral from a PCP.  That seems easy enough, but for some reason, the entirety of New England seems to not have any PCPs available until…January.  I found one place that could get us in, in about 2 weeks.  So now, we are both without our prescriptions, medical care, and have no ability to continue to apply for the IVIG until we can find a PCP – something that sounded absurdly easy until I started making my calls this morning.  I hope I have better luck tomorrow between my apartment tours, he hasn’t had a hydration IV since we left.

I keep hoping every day that things will turn around for Kris, turn around for us.  I don’t feel that I’m doing enough.  But I don’t know what else I can do to try to help him.  I’m grasping at straws here.  I’ve written to my senators, contacted the news, call anyone and everyone I can – If you have any other ideas, no matter how crazy, by all means, send me an email.  Feeding, bathing, transporting, making calls, begging for his life – none of it is solving the problem and I can’t express how much pain this is causing me to see him like this knowing I can’t do anything.  I grew up in a society that always told me that you can do anything that you set your mind to.  I want so badly to believe that.

But as for this situation, I can’t find any peace with it – he should not have to jump through all these hoops just to get the medical help he needs.  I am watching this person I love suffer and I would give anything to know that he will be able to go on loving life, being able to go for walks, bike rides – just to be able to do things he once loved that people take for granted.  If there was ever a person who didn’t take things for granted, lived life to the fullest, that was Kris.

I am so grateful to all our friends who have stepped up to offer help.  It is so appreciated, thank you, thank you, thank you so much.  Please keep wishing us the best as we continue navigating this path as it unfolds before us.

Vi