If we were having coffee today… I’d start by sharing the BEST news of the month: Olive is officially in remission! Many readers may not remember Baby Olive, but she’s my best friend’s daughter, her rainbow baby after numerous miscarriages. Then, at 13 months old, Olive was diagnosed with a rare form of cancer. Less than ten people worldwide have ever had this type of cancer, and none of them were as young as Olive. She was given a 9% chance of surviving. It was a scary, scary time. But Olive made it through an incredibly dangerous surgery (her only chance of survival, and only one surgeon in the country was willing to do it; they had to travel to Boston, in the middle of Covid, with an immunocompromised baby for the procedure) and so many rounds of chemo, and nothing stopped her. And now, she’s six years old! Mikaela says all the time that watching Olive grow up doesn’t make her sad because there was a very real possibility she would never grow up. And here she is: in remission and one of the lucky ones.
If we were having coffee today… we might need to wipe away some tears before we move on to our next topic of conversation! You might wonder how my psoriatic arthritis journey is going. The good news is that I continue to taper off my steroids with no side effects. Every now and then, I’ll wake up, and my finger will be stiff, or the inside of my elbow will hurt, but it generally goes away within a few hours. I tapered down to 4mg this week, and I’m starting to notice a little hip pain. Nothing terrible yet, but I’m keeping an eye on it. Getting approved for Humira has been a process, though. Of course, insurance denied the prescription, which my rheum told me would likely happen since they want me to try the generic version first. Here’s how long this process has been: my rheum sent the script on June 25, it was denied on July 3, so my rheum sent the generic script on July 6, and it was finally approved on July 16. But does that mean I have the medication? Nope! The specialty pharmacy has to process the prescription, and yesterday, I spent almost half an hour on the phone to set up copay assistance for this med through my insurance. And that’s because this med is expensive (my copay for a one-month supply would have been almost $1,000 without this extra assistance), but now it will be zero dollars. Yay! I’m just hoping I can start my new med before July is over. I don’t feel like that’s too much to ask our healthcare system, is it?!
If we were having coffee today… you might ask about my upcoming New England road trip! I am slowly crafting our itinerary, and it’s mostly complete. I just need to put some finishing touches on the final part of our journey. We have booked our accommodations, which were pricey because a) we are bougie travelers and b) peak foliage season means higher rates. We’re staying at a hotel in Boston (Back Bay area), the cutest B&B in Maine (in Bar Harbor), and a glorious two-bedroom Airbnb in Vermont (near Stowe). We fly into Boston, spend three nights there, and then pick up the rental car and road trip up to Maine. After two nights in Maine, we’ll mosey our way over to Vermont by way of New Hampshire, and then spend four nights in Vermont. Keep your fingers crossed that all those gorgeous fall colors show off for these Florida girls!
If we were having coffee today… I’d be happy to tell you all about the research I’ve been doing to figure out the right hair routine. I have very fine hair with very oily roots. As in, I can take a shower in the morning and by the evening, my roots already look greasy. It’s very frustrating! I spent a full year trying to train my hair to need less washing, but that’s just not how fine hair works, unfortunately. So, if I ever want to wear my hair down, I have to wash it first. (Dry shampoo helps, but it also makes it really flat and lifeless.) The biggest things I’ve learned so far:
- Only shampoo my scalp (it’ll clean the rest of my hair when I rinse it out)
- Add clarifying shampoo to my routine (especially useful for those of us with oily roots and/or hard water)
- Use probably 75% less conditioner than I think I need (I know this, but I kinda go crazy on the conditioner when my hair really only needs a tiny bit at the very ends)
Even with all these changes, though, I’m trying to accept the fact that I’m never going to be someone who can go days without washing my hair and still have it look bouncy and beautiful. My hair just needs a little extra TLC, and that’s okay!
If we were having coffee today… I’d confide that I’m planning on moving forward with an endometrial ablation. I guess I needed a year to come to terms with the fact that it means I’ll likely never experience pregnancy, but since I’m positive I do not want to have children, I know it’s the right decision. I have to get another transvaginal ultrasound to measure my fibroids (it’s been a year since I had the original ultrasound, so I have to go through the process again), and then I’ll meet with a specialist for an endometrial biopsy. After that, the procedure will be scheduled! They only do this procedure once a month, but I’m hoping to get in by the end of the year.
If we were having coffee today… I couldn’t leave our time together without talking about the loves of my life! Eloise and Lila continue to be the most perfect babies there ever were. The cutest thing Lila does now is that she knows when it’s time for her food to be dispensed in her automatic feeder. She will either sit in front of it a few minutes beforehand or come running into the living room when she hears those little pieces of kibble hitting her bowl! A girl after my own heart. Eloise just had bloodwork done and her teefers cleaned, and she’s in perfect health. She also gained a little weight over the last six months, which is great news. She is still under 8 lbs, my little peanut!
What would you tell me during our coffee date?
Go Olive, go!!! And that was only the start of the good news. I highly approve of Florida people taking leaf peep trips. That way you get the best of your world and the best of ours. I’m hoping to hit the New England states this fall for my 50 state quest.
Team Greasy Hair here. I’m very happy for people who can go days and days between washings, but that is not how my head works. Either I wash every 24-36 hours or I have a greasy mess on the top of my head, which does not feel good. Don’t even get me started on dry shampoo…again I’m very happy for people who are happy with it.
I’m glad you’re getting the ablation, and also glad that you took a beat to think about it. We all need to do things on our own schedule.
I’d share with you that I made a somewhat last minute decision to go on a road trip next week. Originally I was just going to do the long weekend trip that I did last week and then not do any travel until late August, but I was running out of time to get this particular trip done this year and I saw the window and I’m making it happen. FLW sites plus a blogger meetup! It is a meeting that is LONG overdue and I’m very excited.
I’m so happy to hear about Olive’s wonderful news. That really warms my heart. Yes, wiping away happy tears.
I’m glad you’re getting your meds sorted out (such a pain, though!), and I hope the ablation will help you feel better too.
My hair and scalp are really dry. Maybe it’s where I live, because MT is very dry! But I still have to wash my hair at least every other day, or my scalp gets really itchy. I use a deep conditioning shampoo and conditioner. (Redken All Soft)
I’m so excited about your New England trip! Your plans sound like so much fun!
Well, today I would tell you that smoke from surrounding forest fires is rolling in. Blech. I can taste it in the air.
Oh, Olive! I do remember, I think I had only just started reading your blog then. I am SO happy to hear how well she is doing. That is just the best news and thank you for sharing it with us!
I’m also glad you’re feeling better in the psoriatic arthritis front. We are watching The Pitt right now and the storylines that deal with insurance/ medical debts/ etc have me SO stressed out. It’s such a crazy system and I cannot think that the stress around insurance helps healing!
If we were having coffee today I would tell you that I downloaded the latest Friendship Paradox episode and remembered that I forgot to tell you how much I enjoyed the “Life Admin” episode. It is my favourite that you have done! I loved every second of it.
Pressed send too soon – had to run outside as Rex was chasing a coyote. Life in the sticks, I tell you! What I meant to say that I hope the ablation works well for you – those fibroids and heavy periods really take a toll on a person, and I have known people to have ablations that have worked wonders!
As a Masshole, I will tell you to prepare for aggressive driving, especially on highways! I don’t go to Maine a ton, but Coastal Maine Botanic Garden in Boothbay Harbor is lovely. Pack a lot of snacks for the ride from Maine to NH as it’s a lot of country roads with not a ton of spots to stop and most of them local, not chains. Near Stowe you have to check out Cold Hollow Cider Mill- amazing apple cider donuts! Not sure what’s on your Boston list, but Isabella Stewart Gardner Museum is a hidden gem.
Ugh. I can so relate to the prior auth approval process as I’ve been through it several times. But there weren’t generics when I started those drugs so my process was a little bit less frustrating. The worst was trying to get meds after Paul was born. I could only go on a certain drug and it wasn’t a preferred drug but it was my only option since I was breast feeding. So first they approved the med but then there was a 2nd prior auth required for the “starter kit” as the dosage was different for the first 2 weeks. It was so maddening because why would you approve the drug but not a starter kit for the drug? The co-pay assistance is wonderful, though, and I am glad that you are no longer on a high deductible insurance plan because that makes the process extra bad. For years, I would get “credit” for the copay assistance towards my deductible, but then the insurance companies figured out that I wasn’t actually paying that co-pay out of pocket, so I couldn’t use the copay assistance until I met my deductible. But to figure this out, I would get passed around to so dang many departments of the copay assistance company, my insurance company, and this other 3rd party. It was HORRIBLE. Now I’m on infusions and don’t get copay assistance any longer, even though it’s essentially the same drug, but with a controllable dosage, and it’s extra expensive since I am going into a clinic for infusions (technically at their chemo infusion center). It’s such a drag. You and I did not win the health lottery, that’s for sure…
I remember when Olive was dx’d and figuring out treatment/flying to Boston. Gah. What a thing to go through. I am so very relieved she beat the odds and is a healthy, thriving 6yo!
To end on something positive, I’d tell you that we are enjoying a break in the heat and humidity and were able to open up our windows last night! This morning it was 58 degrees and I wanted to like kick my heels and dance in celebration. I love summer but the heat/humidity can get old. Of course Paul was complaining that he was cold.
That is fantastic news about Olive! I can’t believe what she’s been through at such a young age! I hope there will never be a relapse!
Why is it so hard to navigate the medical system in this country. Sigh. I am sorry you had to jump through all these hoops just to get the meds you need.
Ugh, fine hair girl here too! It’s so annoying. I try to not wash my hair too often, but it’s exactly as you describe: if I want to wear it down, I usually have to wash it that day. I wish there was something we could do about this (but your tips are great. I also have some success with using dry shampoo BEFORE the hair even gets greasy – once it’s greasy, it’s usually too late).
I am so, so excited about your New England trip (esp. Boston). You’re going to have the best time.
I remember when Olive was going through treatment. What a terrifying time and what a joy to hear she is officially in remission. That is a truly wonderful milestone.
I had an ablation, as I think you know, and it was AMAZING. It made such a difference in my life. My periods are annoying but NO BIG DEAL, after decades of them being a huge deal. Feel free to e-mail me with any questions. I knew I was done having kids and so I understand why it’s a big decision to have one if you still want to have that option at some point. But I have never once regretted going through with it.
Boston is at the top of Must See in the US list. I’ve heard nothing but great things about it. You and your mom travel so well together, and fall is the perfect time to go north!