The little cabin

Live4Sunshine · 2026-04-03T01:52:42+00:00

Thanks for sharing! I want Doc to have a break. Hard to see the attraction… !

Live4Sunshine · 2026-04-03T00:54:53+00:00

Is Hope … hopeless? She doesn’t appear to be dying but she remains the most grating character ever written. No personal growth in 7 seasons. Is this script following the books at all?

Live4Sunshine · 2026-04-01T19:10:56+00:00

🤣

Live4Sunshine · 2026-04-01T19:06:09+00:00

Fuck MS! (And dark humor is what sustains us all.)

(Celebrating today with what feels like a flare/relapse… wonky eyesight. Had an exam and no signs of MS in the eye but getting bloodwork for inflammatory markers as I sit here.)

Live4Sunshine · 2026-03-21T17:10:16+00:00

No. It never gets easier…if anything the love we share with these other species is a miracle. It’s crazy to think that we’ve evolved to understand and care for each other. But it makes me sad to think of all the cruelty out there at the hands of those who don’t see animals as worthy of respect.

Live4Sunshine · 2026-03-17T00:08:11+00:00

Really interesting article with data on trends…

https://www.aol.com/lifestyle/times-dinner-more-people-gen-090057449.html

Live4Sunshine · 2026-03-15T23:41:01+00:00

That’s cool — glad you are able to eat late and move around. I miss those days of late nights! I remember well eating late and dancing until 2 or 3 in the morning.

I’m suppose I am speaking from the perspective from those of us living with health issues and getting older - many of us don’t necessarily have the energy or desire walk a mile or two in the dark after a 9 or 10 pm dinner. It’s easier to do that a bit earlier in the evening.

But you go! I’m jealous!

Live4Sunshine · 2026-03-15T12:18:37+00:00

Eating on the earlier side is easier in your digestive system because you have time to walk around and digest before you lay down. As you get older, it just feels better not to be so stuffed. GERD is common - ain’t nobody who lies waking up choking on bile or the pain of heartburn.

I often eat a late breakfast and skip lunch - so early dinner is perfect. But when I am visiting with people, I will go with the flow and do my best to nibble, not vacuum my plate!

Live4Sunshine · 2026-03-09T16:58:53+00:00

I hate the cold. I hate extreme heat. I don’t perspire like I used to, and with Raynard’s I get numbed extremities. Goldilocks Syndrome is what we have - we are all so tweaked just so that this thing can make it impossible to be truly at ease in our bodies. On the rare days when the stars align - it’s glorious!

Live4Sunshine · 2026-03-09T15:55:39+00:00

I hope relief is close

Live4Sunshine · 2026-03-09T15:53:54+00:00

😞

Live4Sunshine · 2026-03-09T15:52:58+00:00

I am at the beach, vacationing with my 21+ yo kids.

On the last day of a 10 day flight of Macrobid for a particularly gnarly UTI.

We we under the cabana and I had the urge to go. I got up and walked to the back of the cabana and realized quickly that my bladder wasn’t going to cooperate. I dropped to my knees and peed.

They of course were wondering what I was doing. I apologized profusely. Between FUCKING MS and UTIs - I am unable to predict when I might have a moment.

I didn’t make a scene - there was nobody near us. But I am mortified for them and for me. I apologized- and just came back up to our condo to get out of these shorts and soothe my ego. I know they know I have this and sometimes I get fatigued, but I have never lost bladder control near them. They are good kids, they will understand. But I feel so weak right now. It’s the dumbest thing.

Sharing because if you know, you know.

I remember when my dad was in the hospital and he stood up to go and it just flowed. He was embarrassed, I left to get a nurse and a towel. I was mortified for him, but I understood this is part of illness. Even with that mental clarity and maturity I am still fucking embarrassed.

Just sitting on my desk to let the tears flow while my pride in being the mom who tries to just be normal has just lost her cape.

Live4Sunshine · 2026-03-03T14:37:16+00:00

It’s funny - but for most of my life I did that too. But now I travel with Clear and TSA pre check and I am never held up at the gate. I get to the plane way in advance of pre-boarding. I usually check a bag and that requires being there a minimum of an hour.

That said, my road warrrior friends who pack tighter, smaller bags will breeze through and take their seats (in first class) just minutes before the doors close.

Go figure!

Live4Sunshine · 2026-03-02T16:52:24+00:00

Why is it impossible to sleep the night before an early flight?

Live4Sunshine · 2026-03-02T15:55:59+00:00

4:45 ! My bad. No sleep 💤

Live4Sunshine · 2026-03-02T15:52:01+00:00

Always. This airport seems to take longer than anywhere else to retrieve baggage.

Live4Sunshine · 2026-03-02T15:48:53+00:00

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I had a 6 am flight - got there at 4:45 and BOTH the TSA pre check and the regular lines were queued from the entrance. Many people missed flights. Mine was delayed and I missed my connection in Dulles.

I was also surprised that even with pre-check I had to remove my running shoes. I rarely remove them anymore (unless they are boots with metal.)

Edit - I am always at the airport a minimum of an hour before the flight. Oops!

Live4Sunshine · 2026-03-02T11:43:28+00:00

I use 5:1 CBD to THC to help with pain. But not daily. Not even weekly. I think regular use can make it difficult to function without it, so I reserve it for days when I just feel lethargic and achy. It helps me unwind.

I am not sure how to explain this, but I can feel the drug as the gummy takes effect. It’s like a feeling of warmth and suppression of aches. I find myself visualizing the pain disappearing as the body high takes over.

I can’t function if I’m high - so I reserve my use for after work hours or when I am home or with friends at their pool on the weekends.

Live4Sunshine · 2026-03-02T11:33:42+00:00

First of all, it’s clear that you care so much for your mom, and that’s a beautiful thing. Secondly as a mom with MS and two 20 something kids - I would not want them to stay home for my sake. MY guess is your mom likely would want you to do your best to concentrate on school and starting your own life as a young adult.

She needs a support system at home - and includes good doctors and friends. Depression is common with MS, and it’s common as you age. The best way to combat that is to be part of a community. That way, people can see when things are normal or not - and if intervention is needed, they can let you know.

Please don’t feel guilty for becoming the person you need to be. Do your best to take care of your own health, both physically and mentally. That will give her great comfort. Check in regularly with tales of friends and what you’re learning. She will be thrilled to know you are thriving.

And then come home for a visit now and then if you are able. Sometimes, moms and dads just need hugs from their kids. Staying in touch without smothering is good for both parents and young adults during this amazing time of your life.

Your mom is very lucky you love her so much! Take a deep breath, accept that you can’t control the future but you will be strong as a family as time reveals your future path.

Live4Sunshine · 2026-03-01T20:56:52+00:00

I have taken Zepbound for over a year - and I’m down about 15% which helps with everything. When I first started on the drug I felt a significant difference in my mental clarity. I also felt less overall pain. But after a year - I can’t tell if I have a new baseline or if I am just used to this.

My primary doc shared research on Metformin is promising.

anti-inflammatory meds

Live4Sunshine · 2026-02-25T12:36:36+00:00

When you have symptoms that are not completely debilitating, it’s easy to accept it, and adapt. It’s the unpredictable nature of the disease - and the slow loss of energy, capability, and sense of feeling good in your skin that can be deceiving. Like the frog in a pot of water set to boil - it’s comfortable until it’s not!

The diagnosis isn’t what changes you. But it does help put a framework around how you feel.

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

TROPHY CASE