Allie's Blog IV: Revenge of Allie's Blog

[davina61]

So it will be a long time before the hologram Dr can fix the pathways with his scan tool. Must be random electrical signals? or an electrolyte imbalance to my mechanics thoughts. But then what do I know.
 I told my friend who is suffering from depresion, she always has had mood swings and she recons she is bi polar, to eat properly as she skips meals and eats rubbish. How can your brain work if you dont eat a balanced diet so it gets fed the protein and vitamins it needs and stay off the alcohol !! 

[imallie]

So it will be a long time before the hologram Dr can fix the pathways with his scan tool. Must be random electrical signals? or an electrolyte imbalance to my mechanics thoughts. But then what do I know.
 I told my friend who is suffering from depresion, she always has had mood swings and she recons she is bi polar, to eat properly as she skips meals and eats rubbish. How can your brain work if you dont eat a balanced diet so it gets fed the protein and vitamins it needs and stay off the alcohol !! 

The official medical position, on your suggestion of eating a balanced diet and abstaining from alcohol as a treatment plan for depression and/or bi-polar disorder? I can tell you without question what that would be:

"It can't hurt!"

Even so, the brain and its inner workings are a hazy mystery. And as bad as I have things, so many folks have it much worse, and I count those with clinical depression among them. Sure, they don't have the pain levels I do, but basically there is a blanket cast over their whole life, blocking out any possibility of joy or happiness getting through. I couldn't imagine. Could. Not. Imagine.

Here's a random "the brain works in mysterious ways" thing for you. My neurologist loves this one. So as some of you know, my nightly cluster headache is/was at 1:07 am. On the dot. Until daylight savings time, and now of course it is at 2:07 am. No big deal right, not that impressive?

Well, over the next several weeks, it will migrate BACK to 1:07 am. I will have a few days where it might be at a random time between 1:07 and 2:07. those are the times when I've broken iPads, glasses, etc.. fallen down... all bad stuff. So now I just have to stay ready the whole hour.  Until it moves back.

There is NO reason for that. Other than, because it happens, cluster headaches are also called "alarm clock headaches" not just "suicide headaches." 

[imallie]

Interesting discussion with my wife tonight... very productive, which I needed.

As mentioned, yesterday was the family funeral which I had to miss for my treatment. Well apparently it was a bag full of cats worth of snarling and sniping, between the deceased's siblings, and a bit about the relationship with our side of the family ... plus my one sister was still upset (unbelievably) that I was "snippy" with her the night before...

Anyway, as my one sister said in giving me the recap: "I think with 40 needles in your head, you got off easiest of all of us." 

I share that mostly because, I had hoped to work on the family letter tonight, but all that stuff 100% did not have me in the mindset to do it. I know it would have been passive-aggressive, at best. Plus, the fact that I really want to move forward with things, and I really thought that telling our son would be a virtual starter's pistol for transition, and instead it has been more like the lighting of an Olympic Torch - it's an extremely big, memorable moment... but afterwards, nothing really happens right away.

So back to tonight. Moving forward became our dinner topic, at our weekly Lenten fish taco meal at this wonderful Mexican place near us. (BTW, when we arrived tonight, one of the waitresses came over to us as we arrived and said "Oh, so happy to see you... but I am so sorry to tell you, we are out of fish tonight."  It took us a beat to realize she was teasing us. We knew we were treated as regulars but it's a whole new level now, apparently  )

Regarding the letter... we agreed that there is no world in which we will not tell all my sisters together. Telling one or two before the others is a non-starter. Our preference continues to be to set up a lunch, send a letter the night before and thus giving them the option of not attending if they are uncomfortable.  My wife raised one logistical hurdle - normally when we set up that kind of lunch, everyone brings spouses. But we kind of just want my sisters there. And it's kind of weird to set up a benign lunch but make THAT request.

So I think we left it that we'll set up the lunch, and in the letter I'd say I'd prefer that just they come... but if they chose to bring spouses, and assuming they too are supportive... then that's got to be ok.

But the thing is, this can't keep lingering. I told her I really would love to just write this and send it this weekend. And she talked me off that ledge. She asked which way did I think, in the long run would be better and have the higher probability of success. And by far it's the one where there will be the in-person meeting. I know that fully. I just needed to hear it.

Lastly, we spoke about hair. That salon I've mentioned in the past is like an hour from here, but it's not too far from a town we've gone to from time to time for lunch... and there's a movie theater there... so we can easily schedule a visit there as part of a weekend morning if we need to go every 5-6 weeks. So I wrote to the owner and started the ball rolling. Hopefully I can get on the books for early/mid April.

I apologize for the long, meandering entry... but that conversation felt like it moved the ball forward some, and I really needed it.

Love,
Allie

P.S. Oh, speaking of things I needed... I always leave my face alone for a day after electrolysis, so today was my first day shaving this week. And after I was out of the shower, I, unusually, got caught sort of staring at my face in the mirror. And for the first time in a while I really started to see changes.

My wife works from home on Friday, so I went out and asked her honestly if she sees them, and she said "maybe...?" but then I grabbed a baseball cap and put it on, covering up my very obviously balding head, so it puts the focus just on my face and the long hair sticking out the back of the cap. And she immediately nodded and said, "yeah, 100%"

[Gina P]

And after I was out of the shower, I, unusually, got caught sort of staring at my face in the mirror. And for the first time in a while I really started to see changes.

My wife works from home on Friday, so I went out and asked her honestly if she sees them, and she said "maybe...?" but then I grabbed a baseball cap and put it on, covering up my very obviously balding head, so it puts the focus just on my face and the long hair sticking out the back of the cap. And she immediately nodded and said, "yeah, 100%"

Its so affirming to see the changes. Slow as they might be. I hope you are taking lots of pictures to look back on.
Hugs Gina 

[Moonflower]

Interesting discussion with my wife tonight... very productive, which I needed.

Yay!

"I think with 40 needles in your head, you got off easiest of all of us." 

I doubt that. I'd choose the bag of cats.

As bad as my chronic migraine was for years, no doctor could talk me into Botox. I wish I could have braved it. But Butcher's Broom and hemp oil did a lot, and naps. I'm afraid that stress was/is a huge factor, even though my stress is SO much lower than it used to be. But then, my migraines are MUCH milder than they used to be.

Your 40 needles got me adding up the needles that I got for allergy testing a week ago. ~60. I didn't know it would be that bad, so without anticipation, I rolled with it. I almost burst out screaming and flailing but then they were done.

I really thought that telling our son would be a virtual starter's pistol for transition, and instead it has been more like the lighting of an Olympic Torch - it's an extremely big, memorable moment... but afterwards, nothing really happens right away.

🤣

That's where we are after telling my kids.

Regarding the letter... Our preference continues to be to set up a lunch, send a letter the night before... I'd prefer that just they come... but if they chose to bring spouses, and assuming they too are supportive... then that's got to be ok.

Thanks for sharing your thoughts. So much to consider as we anticipate these celebrations. May yours be a celebration!

That salon I've mentioned in the past is like an hour from here, but it's not too far from a town we've gone to from time to time for lunch... and there's a movie theater there... so we can easily schedule a visit there as part of a weekend morning if we need to go every 5-6 weeks.

What a marvelous way to do it! Similarly, no electrologists are near us, let alone trans-friendly ones, so we'll need to schedule the appointments with nearby attractions. Thanks for inspiring us to see it that way.

And for the first time in a while I really started to see changes.

My wife works from home on Friday, so I went out and asked her honestly if she sees them, and she said "maybe...?" but then I grabbed a baseball cap and put it on, covering up my very obviously balding head, so it puts the focus just on my face and the long hair sticking out the back of the cap. And she immediately nodded and said, "yeah, 100%"

YES! 🎉

[imallie]

Thanks Gina, thanks Moonflower!

Gina: yea I need to do better with the pics. For a while I was doing weekly pics but they started to deflate me a bit. It just started looking like I was starting a weird scrapbook entitled "different shirts that I own" 🙄😂

Moonflower: Botox needles are fine. I mean, I guess with migraines and clusters my pain tolerance is high. I doze off during electrolysis. I did used to get nerve blocks for my migraines. THOSE needles were something else. My wife was in the room for that procedure once. ONCE. She said it was horrifying. I watched her get an epidural during childbirth so- we're even!

[imallie]

Oh by the way, hair lady got back to me this morning. Which is very impressive in and off itself. Email at 1 am Friday night, salon owner replies 7:30 am Saturday?
Plus she not only answered all my questions she gave me more info and asked other questions I hadn't thought of. She asked for some pics which I just sent as well.
But one of the big things she brought up was "do you want to stay gray or are you open to another color?"
She explained that gray hair is largely synthetic - so it doesn't wear as well, look as good and won't be as hale/hearty for beach life.
Both my wife and I had the same immediate reaction. Well, she then quickly shifted to "it's completely up to you"... but her face said what I was feeling: with so many other changes I am throwing at people I just thought suddenly having a radically different hair color seems like such a big, unnecessary swing.
But if it's really that much more practical then I need to at least go in with an open mind. So that will be the plan. She's fully onboard.

So we will see what hair lady says in response to the pics!
🤞
Love,
Allie

[Moonflower]

with migraines and clusters my pain tolerance is high. I doze off during electrolysis.

I hope my wife can, too

I did get used to get nerve blocks for my migraines. THOSE needles were something else.

I made appointments for nerve blocks several times...

I watched her get an epidural during childbirth so- we're even!

Fortunately my kids were born too fast for an epidural. Jet propelled! My first one was born just after the nurse told my husband to go take a break because I'd be a while. My second one was born as soon as I arrived at the birthing center even though we left home as soon as labor started. My third one was born on the way to the birthing center.

[imallie]

I hope my wife can, too

I made appointments for nerve blocks several times...

Fortunately my kids were born too fast for an epidural. Jet propelled! My first one was born just after the nurse told my husband to go take a break because I'd be a while. My second one was born as soon as I arrived at the birthing center even though we left home as soon as labor started. My third one was born on the way to the birthing center.

Wow! Yeah, my wife doesn't recall the epidural at all... just me. Burned into my mind. It's funny, I USED to have an issue with needles. Not any more!

As for nerve blocks? I have to say the first time I did them they were transformative.

Right now, I would rate my pain level as zero. Because my daily migraine will not start for 60-90 minutes. However, it really is not zero. It's probably what a normal human person would call a 2-3. But it's MY zero, you know?

Well the first time I got a nerve block it went to ACTUAL zero and it was like I was breathing air for the first time. It was glorious. And it was instantaneous. It lasted about 16 hours and then the migraine came back with such ferocity ... it was something to behold.

Still, it was a worthwhile trade. The pain of the blocks, the post-blocks rebound... for that window.

But the window got increasingly smaller each round - 12 hours, 8 hours, and then 4 hours. They added steroids into the mix which supposedly extends it, which moved it back to 8 hours... but since it wasn't cumulative like the Botox, and I was doing that concurrently... I finally decided to bag that one. It wasn't worth all the hassle.

[Oldandcreaky]

Moonflower, it's great having you in Allie's blog.

[imallie]

Moonflower, it's great having you in Allie's blog.

Yes, very much agree!

Please, make yourself comfortable.

Also, don't forget to tip your waitstaff. And try the veal...😉

[imallie]

Heard back again from the hair lady in response to my pics.

She said my hair would work great. She said a topper would be exactly what I need, at it would attach with "beads" on the sides and back (not exactly sure what that means, other than it's not glued nor sewn in...) and it would have to taped in the front, which makes sense as there's nothing to attach to there.
She said a light brown would be her first thought, color-wise. And while I'm open... my wife brought up a few other points at lunch, things we at least need to consider when we are discussing it during the appointment.

1. Obviously if I go with a color change now I'm committing to coloring my hair to match the topper. Does that increase the frequency of my visits the salon? What does it do to the costs (less worried about that... can't imagine it's THAT prohibitive)

2. The hair lady had originally mentioned that were I not fully out, the topper could initially be put on with clips, so that I could remove it when I desired if I was going back and forth between modes. That's fine. But if I'm coloring my hair isn't the jig already up? So does that mean I cannot do this at all until fully out?

She (my wife) also just wanted to know more about hair dying, and what it does to the hair, etc..we both had moms who dyed their hair and have a flashbacks to various parts of that.

I don't think any of it is prohibitive, in fact I'm going to look for a Saturday upcoming on the calendar and book an appointment and we'll go from there.

🤞
Love,
Allie

[Oldandcreaky]

Wow, Allie. Change is afoot. Oops, I mean a head.

[Moonflower]

As for nerve blocks? I have to say the first time I did them they were transformative.

I couldn't get on the calendar quickly enough while I was still brave. I had the dry needling because those doctors were immediately available, but, like your nerve blocks, it decreased in effectiveness.

Right now, I would rate my pain level as zero. Because my daily migraine will not start for 60-90 minutes. However, it really is not zero. It's probably what a normal human person would call a 2-3. But it's MY zero, you know?

Yes. I do know. Your Botox experience sounds so worthwhile!

I imagine that it's tempting and aggravating to buzz around now getting loads done before the attack. I'm continuing to learn not to do such a thing.

Well the first time I got a nerve block it went to ACTUAL zero and it was like I was breathing air for the first time.

Talking about breathing, I went to an otolaryngologist (ear nose throat dr) once for my swollen eustachean tubes. He showed us the damage that a soccer ball did to my nasal area when I was a teenager, visible in the CT scan. He proposed extensive surgery, claiming that it could eliminate the migraine (which, by the way, began when I went through menopause). I got a second opinion. That dr agreed with the CT scan radiologist who stated that my deviation from the norm was only mild. I suppose that some people might benefit from such surgery. Have you considered any such thing?

It was glorious. And it was instantaneous. It lasted about 16 hours and then the migraine came back with such ferocity ... it was something to behold.

Still, it was a worthwhile trade. The pain of the blocks, the post-blocks rebound... for that window.

But the window got increasingly smaller each round... I finally decided to bag that one. It wasn't worth all the hassle.

So sorry 😟 😞 😔

[davina61]

I dye my hair just incase the grey shows under my wig, mid brown to match the hairy hat! Just a do it yourself kit, if you do be careful as it will stain your skin.

[imallie]

Yes. I do know. Your Botox experience sounds so worthwhile!

Very very much so. My chief neurologist, who has been doing this for quite a long time, considers it the best treatment all things considered. While he's always looking at new options for me (with my condition insurance approves me for ANYTHING... um, yea me? 🤔🙄😂) he is loathe to just put "another poison" in my body without feeling it was going to be helpful.
And he teamed up with one of the nation's leaders in pain management - and it is that doc who, pre-pandemic my wife used to have to drive me an hour to visit for each Botox session. Because he did sedation with Botox, it took hours. But he was great. Loved working with both of them, but he moved on to a national role and left his practice... so now I do it locally with another colleague of my neuro who is wonderful.
But Botox is cumulative, so who knows how much further along I'd be without the pandemic reset?
So yeah, if there's any way to swing it... I think it would bring relief. Just NOT immediate.

Talking about breathing, I went to an otolaryngologist (ear nose throat dr) once for my swollen eustachean tubes. He showed us the damage that a soccer ball did to my nasal area when I was a teenager, visible in the CT scan. He proposed extensive surgery, claiming that it could eliminate the migraine (which, by the way, began when I went through menopause). I got a second opinion. That dr agreed with the CT scan radiologist who stated that my deviation from the norm was only mild. I suppose that some people might benefit from such surgery. Have you considered any such thing?

First off, so glad you got the second opinion!

And that's one thing that has not yet been suggested to me. However, because of the mysterious nature of migraines & clusters, it's incredible how EVERY specialist always thinks what they do will be the cure. Let's see what's an example? Oh here's a good one : My dentist thought that dental implants would fix my bite and cure my headaches.

So your ENT suggesting ENT surgery? Not shocking. 😂

[LoriDee]

Allie, I wear both wigs and toppers. Full wigs in the winter, and toppers in the summer. It just gets too hot. My toppers clip in, and as you mentioned, I have no hair to clip to in the front. My stylist recently had a gentleman client who wears toupees. He had just moved here from the UK and asked if she could order a special wig tape that he uses. She placed the order with an extra quantity for me to try.
I removed the front clips and use the tape. It works very well and holds securely all day long. In the kit was Lace Release Spray which is just rubbing alcohol, but it neutralizes the adhesive so you can pull the tape off your skin and from the topper without damaging it.

[imallie]

Allie, I wear both wigs and toppers. Full wigs in the winter, and toppers in the summer. It just gets too hot. My toppers clip in, and as you mentioned, I have no hair to clip to in the front. My stylist recently had a gentleman client who wears toupees. He had just moved here from the UK and asked if she could order a special wig tape that he uses. She placed the order with an extra quantity for me to try.
I removed the front clips and use the tape. It works very well and holds securely all day long. In the kit was Lace Release Spray which is just rubbing alcohol, but it neutralizes the adhesive so you can pull the tape off your skin and from the topper without damaging it.

Hey Lori -

Sorry, not sure I quite understand. When you say it gets too hot - do you mean the wig or the topper? Or both?

And as you described, I have nothing to attach to in the front. So they were talking about attaching via beads along the sides and back... that would be the "permanent" placement, in that I woudn't, as I understand it, remove it at all between visits (every 5-6 weeks). That sounds ideal to me.

Just doesn't work until I'm fully out.

So I know one of the things people really enjoy about wigs is you can go easily from looks to look on any given day, is that why you choose not to something with a longer-term attachment?

Apologies for what probably are naive questions... this is a whole new area for me. Just trying to get up to speed.

Thanks!

[LoriDee]

The full-coverage wigs are too hot to wear in the summer. In winter when it's 4 below zero it's a welcome hair hat (as Davina said). The topper only covers the top so my hair is visible flowing out from under. The construction is a monofilament weave with open wefts that allow heat to escape.

I have never heard of the beads, but I believe you are correct. Like extensions that stay in between sessions. Toppers and wigs come off at the end of the day and offer flexibility in color and style. If you are not sure what color you want to go to, why not try a wig or topper to experiment with? If you saw my Progression album, you can see the different styles and colors that I tried.

You have to scroll down past my Army pics.

The Story of Lori Progression

[imallie]

Wow, Allie. Change is afoot. Oops, I mean a head.

😂

Yes, ma'am!

And it's funny, this last year has been all about the "incremental change."  My wardrobe slowly changing without anyone really noticing... my body slowly changing without anyone really noticing... hair lengthening with a story.. new glasses... etc..

But if one day I am going to go from gray on the sides and back and down to the wood up top, to full head of light brown hair with a feminine cut.  Well, I'd say it's hard to work "incremental" into that action plan.