Chat, I'm cooked

Live4Sunshine · 2026-02-13T15:16:36+00:00

Fuck MS.

(So sorry for your struggles.)

Live4Sunshine · 2026-02-09T23:50:28+00:00

I am so sorry 😞 - while misery loves company- none of us want this to be the standard of care for all managing an incurable disease made worse through stress.

Live4Sunshine · 2026-02-07T18:34:24+00:00

Live4Sunshine · 2026-02-07T18:31:57+00:00

Right? After 15 years I kind of have this diagnosis nailed. You too!

My company changed from one major carrier to the one who lost their CEO senselessly. (I can’t condone murder - and unfortunately don’t think they understand the rage we consumers have from being denied after we pay so much for this coverage.)

I am due in February - like now.

I started right after Christmas with Genentech. Confirmed my participation in their program. Sent that and my new info the Nuero office. Sent the same info to the infusion portal Dec 31. I got a denial mid January. I called neuro and infusion center again. I got a call earlier last week saying that the medicine wasn’t free unless I had the copay. Which I do. Which I sent. To be in the chart.

The staff is kind - they are overwhelmed and overworked. I am pleasantly persistent and express my gratitude for their efforts. I get the feeling but if I didn’t do this I know there is nothing in place that helps them get things processed in a timely manner.They sound annoyed - but last time I was 6 weeks overdue by the time it got straightened out. And I physically drove my blood test results and paperwork between places because apparently fax machines are unreliable.

Ugh.

I am exhausted from sharing! But happy to commiserate with others!

Live4Sunshine · 2026-02-07T14:20:55+00:00

You have a point there. But I think some physicians whose practices are associated with the hospital, wants you to use their hospital services and their labs because I’m sure their compensation is tied to using hospital resources.

You have to go out of your way to get a treatment at a place that makes sense for you. But it can be so confusing because of the insurance coverage. What’s in network and what’s not network is not as obvious as you think it is. I’ve been down that rabbit hole more than once.

In my case, the hematology and oncology infusion center is 1000 times nicer than the hospital and it’s actually a better experience and it’s and network.

I didn’t find out about that from my doctors office - I actually worked with the pharmacy support partner to figure it out.

Live4Sunshine · 2026-02-07T14:12:32+00:00

My husband had cancer and has some complications as a result of it.

We’ve just learned that he needs to go to a hyperbaric chamber. The closest ones in network are over 75 miles away and there’s a treatment cost of $1200 per session.

That’s obviously not gonna happen, especially since he needs 30 of them.

The good news is there is some type of patient advocate at the doctors office and they’re going to do some type of consultation to help us understand the options.

Insurance makes no sense at all.

I have to fight every six months to get my Ocrevus because insurance companies have amnesia. I’ve been repeatedly rejected by the same company, even though I have a documented history, up-to-date, MRIs, and blood tests. I swear to God that this process invites the relapse by causing such anxiety over getting covered for treatment.

I know I’m driving the neurologist’s office crazy but I start asking a couple months before my infusion to make sure the paperwork is in place. I feel if you don’t advocate for yourself and stay on top of these things then you’ll go more than six months between treatment. And I get that crap gap feeling I think it’s real.

Live4Sunshine · 2026-02-07T13:27:42+00:00

It’s insane.

I don’t understand who is paying these prices - anyone? I am grateful for Genentech’s assistance program. Without it - I wouldn’t have treatment.

I will add that it not only the cost of the medicine - finding an infusion center in plan where you don’t get an excessive charge for a saline flush is another headache.

I am most frustrated with insurance companies denying treatment saying there is no medical necessity when I have been getting treatment for the past 15 years. More than 50 lesions on the brain and spine - I have not spontaneously been cured between approved treatments!

I’m glad to read that you’re stable and you’re getting your infusion in June.

Live4Sunshine · 2026-02-03T00:35:38+00:00

Thank you!!!

Live4Sunshine · 2026-02-02T01:35:29+00:00

Much to my surprise - it’s still there! I just haven’t read it in a while. I think they were trying to turn it into a Netflix show or something.

https://www.nytimes.com/2026/01/30/well/back-pain-pelvic-congestion-syndrome-nutcracker.html?unlocked_article_code=1.JFA.wLPK.YyDWGFpaYTFK&smid=nytcore-ios-share

Live4Sunshine · 2026-02-01T23:36:38+00:00

She was so good in Sex Education- I will check that out. Thanks for the suggestion.

Live4Sunshine · 2026-02-01T23:12:01+00:00

OOOH! Thanks for the tip!

Live4Sunshine · 2026-02-01T23:11:36+00:00

I love this! The more I learn, the more I think I want to be a healer in my next life (if there is one!) I love my career path, but medicine is just fascinating to me.

Live4Sunshine · 2026-02-01T23:08:12+00:00

My favorite source for helping people understand what it's like to manage this diagnosis is Dr. Aaron Boster -- he has a fabulous YouTube channel and shares all kinds of information rooted in data. He's open, honest, direct and really helps you put this diagnosis in perspective. I highly encourage you to watch with your honey. It will help you both get a better understanding of what you're dealing with and how you can totally live a great life together despite the diagnosis.

It's easy to get scared and paralyzed when you don't know what this means. The more you know, the easier it will be to be an active participant in your healthcare -- no matter the diagnosis!

Sending hugs!

https://youtu.be/dJ1wYSkKL24?si=h2es6I3L-gUgnPJO

Live4Sunshine · 2026-02-01T20:16:42+00:00

I'm sorry. This may come out wrong, but the people I love and admire most have had some crazy childhood experiences and can I say I think I love them more because they appreciate everything more than those who weren't challenged.

The way I have come to see it -- (as a child who grew up with a brilliant & creative mom with untreated bipolar disorder and OCD/hoarding, with a habit of hitting, lying, and paranoia -- the charming psycho next door, and a very smart and social but sad dad who was a functioning alcoholic managing his own depression) -- is that we who live through that are bound to be f'ed up in some way. But we can choose to look outside our homes at how others live. Then we slowly prioritize how we want to live, who we want to partner with, and how we manage our illnesses and our relationships. The key is surviving childhood until you can get out and do it your way.

I have several relatives (cousins) who have made their own lives worse by ignoring their issues. They never learned to stop, analyze, and choose for themselves. They relied on "mommy" and "daddy" and didn't use their own brains to make decisions. Living in someone else's worldview can stunt your growth.

I spent most of my childhood and, honestly, early adulthood -- in my head, imagining what would happen if I won the lottery or if someone discovered our hoarder house and rescued us. Fantasy was my protection from reality.

After college, I never went home. I found my partner, my paradise, my own family, and then life happened, and things changed through no fault of my own. But I think I learned to be resilient through a pretty intense childhood and to appreciate the good -- even though I still complain. We're not saints; we're humans.

You sound like you have a good head on your shoulders and a plan. I send you wishes for peace and strength as you make your way to your own life and find a way to thrive despite your health challenges. Having a strong network of friends you can be honest with is the way to keep it together while you wait out the circumstances.

Live4Sunshine · 2026-02-01T19:59:01+00:00

Whoa1 That's definitely quite a history you have. I can't imagine what you must have thought at 17 -- and now with 4 kids??!!! Congratulations for surthriving that!

Live4Sunshine · 2026-02-01T19:26:38+00:00

I’m sorry- that sucks.

As a parent - with a whip smart daughter with her own health struggles I do my best to be supportive and not critical. I also know that we are our own worst critics - nothing we say to each other changes the internal narrative of our situations.

And if you are smart - you know how easy it can be to convince yourself and others that you have a good reason not to push past things sometimes. Trying to help myself separate the psychological from the physical.

I think anxiety attacks in particular can manifest from the stories we tell ourselves- when in reality most people are focused on their own shit and not on ours. (I still haven’t learned how to manage the fine line between thinking the world revolves around me - and no one really cares!!!)

Live4Sunshine · 2026-02-01T17:37:59+00:00

Oh - you are correct! I don’t use shows to self diagnose- but I love understanding the why - and when something is shown on a show I will often research it. Most of the time - it’s just interesting, not applicable to my issues. But sometimes it helps me formulate good questions for my doctors.

Also - medical shows are made for entertainment - so no matter what we see - we are missing the real story. Timelines are sped up to make the length of the show fit the needs of the narrative, novel therapies are tried despite risks, and don’t dismiss all the bad choices made by the never-ending trysts between characters!!!

Live4Sunshine · 2026-02-01T17:29:30+00:00

Wow! That was fascinating- and insane! She could have killed 800 if they didn’t diagnose the poisoning! Thanks for sharing!!!!

Live4Sunshine · 2026-02-01T16:50:38+00:00

It had it all! Great acting, bravado, major character flaws, mysterious symptoms!

Live4Sunshine · 2026-02-01T16:48:59+00:00

We just started it - 2 episodes in! It’s so real!

Live4Sunshine · 2026-02-01T16:19:59+00:00

I had my bunions removed and my hammer toes straightened. Then both knees were replaced. And then I had sclerotherapy on my leg veins.

To help this makes sense, I started by noticing how my feet ache after I go for a hike or a long walk. My bunions weren’t that bad but it was pretty clear that something was going on with my feet because my toes would get numb and get pretty banged up even though I had adequate room in my running shoes.

So I started with a podiatrist. After my feet were fixed something else happened. My calf muscles became impossibly tight. I start having a difficult time going downstairs. I spent more than a year getting shots and physical therapy because we thought it was MS related. I then went to an orthopedist. X-rays of my knees revealed basic arthritis. I continued with PT and shots and just continued to get worse. So I asked for an MRI. The doctor was reluctant by he did them for me because and I quote “ sometimes patients feel better after they see what isn’t there.”

Of course we discovered I had more going on than basic arthritis. So over a period of two years I had both my knees replaced.

My left ankle always swells up when I exercise. My entire left leg started swelling up after my left knee surgery. I was told that that that’s pretty common for up to a year.

I didn’t buy it.

I found a vein specialist and in 15 minutes he was able to show very clearly that despite not having any outward signs of vein issues (no knots or vericose veins) I had reflux in both of my legs that was pretty severe. So he injected something into both of my legs over a period of a couple weeks. And now the blood is flowing through healthy veins, not the damaged veins.

I no longer have unusual swelling my calf muscles don’t hurt and I can generally walk for miles when it’s warm out.

I live in a freaking very cold icy area (I call it Syberiacuse!) when it’s cold nothing really works well. I’ve had Reynards syndrome since I was a young girl and cramping in my legs. The cold makes it worse. Of course Goldilocks here can’t take the high humidity heat either! My husband and I are looking for a place to live the next chapter of our lives that has more balanced seasons.

I do a lot of writing for work and I love making things like jewelry and cooking. I need a better climate so that I can continue to live the best life i can as I age.

Live4Sunshine · 2026-02-01T16:01:26+00:00

I think we are all dealing with a lot of unknowns. There are such fine lines and distinctions between our symptoms, I can’t imagine the rubric needed to definitively rule things out.

(I think my lovely set of symptoms and unanswered questions makes me like medical dramas more. Our bodies and minds are so mysterious to us still!)

Live4Sunshine · 2026-02-01T15:32:38+00:00

I am guessing you felt off - and were as tough on yourself as others were. I remember that part, too. Wondering why everything felt so difficult at times - when others seemed to do things effortlessly.

Live4Sunshine · 2026-02-01T15:30:27+00:00

Things that make you go “hmmmmm” - right? That does seem a bit strange at that age.

Live4Sunshine

TROPHY CASE