Erythromelalgia

I mentioned that I went to a rheumatologist a few weeks ago. I waited 10 months for this referral appointment so I. was. going. with Sutton, stroller, snacks, and all. It was an hour's drive to get there. 

(was a long morning)

The long version of the lead-up to the appointment was that I saw a doctor in Kansas in the spring of 2021 for something unrelated, mentioned this issue, and he told me I should try to get into a rheumatologist. He put in a referral and they had wanted to set up an appointment in Kansas City back during the summer of 2021. We were super busy that summer and driving 3.5 hours one way to a specialist with 3 year old Wells sounded like quite the nightmare. So I just didn't. Then I was pregnant. And seeing anyone who specializes in vascular issues while pregnant is silly because your body doesn't work the same way when you're carrying a baby. Finally, last summer, I decided to set up a new referral out of this hospital and they put me at a doctor an hour away and it was a 10 month wait. 

Basically, starting back in 2013-2014, I noticed that my hands would get really red and even swell a little when I was hot, over-exerted, or stressed out. But then sometimes, they'd get really cold and seem to shrink back (like my rings would feel loose) when I was stressed out. Essentially, I've noticed that whatever I'm feeling goes to my hands. Sometimes they get really cold and have the blue tint of seeing the vessels too. 

It was the oddest thing obviously but, like anyone else probably would, I just ignored it. I had enough problems back then: the effects of coming off of hormonal birth control (acne), diagnostic testing for fertility issues, etc. This did become a persistent problem over the next few years though, for sure, but I was convinced it was all connected. 

While I had been told by a few doctors that I likely had Raynaud's, this specialist took one look at said ahhhhh erythromelalgia. There was no doubt about it to her. 

The weird thing about this is that it's usually a secondary condition caused by a disease you are already diagnosed with or a side effect from a strong medication. It can also be genetic or it can just pop up. For me, it just popped up. The doctor said she'd only seen it once before and that was connected to lupus. 

For me, it's not severe. If you look at the symptoms online, it sounds really awful. In my case, it's more cosmetic than anything. For instance, it doesn't affect my feet at all, thank goodness. It's only my hands. It doesn't hurt. So redness and heat, but not burning or pain. Sometimes my hands will be red but they'll feel cold. Sometimes I notice tingly-ness if it's particularly bad...this would happen, for instance, if it's 90 degrees outside and I'm cutting grass. Or if I'm out walking the dogs or pushing the stroller in warm weather. So I've never really treated it; it usually just goes away when I've "calmed down" from whatever activity I'm doing. It does act as an awful tell if I'm particularly stressed sometimes. I've never even attempted to count the number of flare-ups...usually it's just if I'm outside in warm weather. 

The rheumatologist told me there wasn't really much I could do besides take a baby aspirin every day. She did a few special blood tests to look for a potential underlying cause. The only good thing about our years of "unexplained infertility, with potential PCOS" was that I'd already been tested for everything. The tests came back negative for any autoimmune issue. She said I have *no* autoimmune conditions, which was always something I assumed I likely had on some level. I do think there's a few connections, from the PCOS to the supposed thrombocytopenia to the, now, erythromelalgia. 

Anyway, I just thought I'd put this put there. It's pretty rare but still possible that you or someone you know could be dealing with the symptoms. 

(It doesn't look that bad in this pic but I have purposely avoided pictures of my hands in hot weather so I don't have many...weird, right? I remembered to take a picture while I was walking yesterday.)

Supplements lately + Anti-Inflammatory Smoothie

For most of my adulthood, I barely remembered to take a vitamin. That changed with fertility treatments and all the supplements. And then I took prenatals for a year or so. Then I lost interest again. 

But it's winter and we've got preschool germs and school germs and traveling germs and the only thing I can do is up the supplement game. Like, I've gone all in. This is what I'm taking/buying and making everyone else take too. Much of it isn't about seeing immediate results, but about looking at the big picture of health and how I want to feel overall. This is a long game thing. It's really hard to know what to take or what to try and I usually hate research of almost any kind, but I don't really mind this. I can mostly find what I'm looking for on Amazon or at Walmart, too. 

*Clearly, clearly, I'm not a doctor. This is just what has been recommended to me by my doctors and what seems like a good idea for us right now.*

Collagen: I started collagen last year. It's a great extra source of protein. I put it in coffee in the morning and a smoothie if I have one later in the day. I don't do a full serving (2 scoops) but usually split it between the two drinks. 

Prenatals: I have tried the fancy ones and I don't like them. Anything chewy with omega-3 just makes me gag. I just buy the basic gummy prenatals because I like them. I did learn this time that you can skip a day and your baby won't, like, stop growing. I always assumed superstitiously that you needed to take them every day no matter what. They told me back in September that if I felt sick, prenatals often would make it worse so, it was fine to skip a few days. They're just more of a blanket recommendation for everyone than they are necessary day in and day out. 

Magnesium: I bought these Calm gummies after over a year of considering it. Sometimes I buy things like this and just don't use them like this sleep aid that I've thrown away twice now, so I was hesitant. Magnesium is supposed to help with leg cramps and contribute to more restful sleep. I did ask my doctor and she said a magnesium supplement is never a bad idea. The chiropractor I saw said magnesium is one of the number one supplements they recommend. 

Zinc: Because why not? This is a Zinc/Vitamin C blend. 

Liquid probiotic: I saw this recommended and, after reading up on it, it seemed like a really sensible idea. I'm not a huge kombucha fan, but that's basically what it tastes like. It's a small dose though and I only take it once a day. Scott and Wells take it too. It's not cheap, but I think that the investment in health is worth it. 

Vitamin D: My doctor told me everyone needs extra vitamin D and that, this time of year, our bodies aren't physically able to process enough in the short hours of sunlight even if we are outside a lot. These are for me and Scott. 

Immune Support + elderberry: I read recently that kids don't actually need a multivitamin. I give Wells these instead.

Is there anything I need to add? What do you take? 

This, as the title said, is my go-to smoothie lately. I went off of that recipe and the only addition I really make is the mango or berries to bulk it up. Pineapple would be good too. I don't like putting ice in my smoothies. 

Blogging in Real Time

It's Sunday morning and I'm sitting down to blog.  I often sit down to blog on Sunday mornings, but I almost never blog in real time.  I usually put together posts for the coming week or jot down some notes in my book posts that I do once a month*.  However, I rarely write and publish a post all at once.  In fact, that phenomenon occurs maybe once every 6 weeks.  Strange, right?  Joey got me thinking about this after her post on Friday.  So.  Here we are.

I spent most of yesterday with my face scrunched up like this because I had to have my eyes dilated.  I've only had this done once before and that was, most likely, on a cloudy Alaska summer day.  This time, it was the brightest, warmest, windiest November 29th that Colorado Springs had ever seen.  It wasn't a good combination and I didn't make it to the post office because I assumed they'd think I was there to rob the place because I wouldn't be able to take my sunglasses off.  So there are still 4 boxes of Christmas presents sitting in my car.  Maybe next week.

My car also decided to spontaneously light up the AWD warning light yesterday and I don't know what that means.  Scott can't find anything about it in the manuals or online, so I need to call the dealership tomorrow…which is just what I will feel like doing on the first day back to school.

The highlight of our evening was letting Scout at the popcorn bowl while we watched a movie.

He loves popcorn and if he's asleep, I like to hold popcorn under his nose. He'll snap awake and start chomping away.

Also, we think Jett is deformed because he has this crazy underbite.  When Scott first picked him up, he wasn't our first choice (ha ha ha…oh, I laugh at the irony) and he said, "He's pretty cute.  He's got an underbite and it makes him cuter."  I was skeptical.

And that's real-time blogging.  

*When I write book review posts, I actually keep track of what I'm reading in a blog post draft.  I add to it every time I finish a book or think of something important to say about a book.  I realize that a normal person would keep track in a journal or in Evernote or something, but I'm a fan of working smarter, not harder.  Why would I write something down just to rewrite it later?

#Victory…

..on two counts.

(Side note:  I'm going to start hashtagging every major remodeling task with #victory when it's complete.  It feels like we just won a war against the sad state of the way this house used to be. )

Victory #1 The quartz countertops have been installed and the reason why I was so anxious over it was because this is the FIRST thing we've hired a contractor to do.  When you're depending on someone else's timeline, things get complicated.  However, it was also nice because there wasn't much for us to do (after Scott spent 3 hours on Sunday night making sure the island was level, while I wined my way through Once Upon a Time…).

Here's your BEFORE…

In May

And AFTER:

I'm impressed!

The countertops are also our big ticket item.  Between those and the floor, that's where we've invested our money.  A lot of people budget x number of dollars for cabinets when doing a kitchen.  We've redone the cabinets that are already here and spent a minimal amount on solid wood cabinets that we can paint.  Scott has also built custom cabinets for those spaces where pre-made ones just won't work. You can see that we've actually rebuilt the island, but I'll go into that more when it's actually done.

Just a countertop in search of a backsplash…

We chose to over mount the sink because we're paying for that copper and we want to see it.  A lot of people under mount.  The guy who came to measure for the counters kind of gave Scott a hard time on that one.  

We extended this counter by about 8 inches. It adds extra storage and, above, we're going to put in a wine rack.  And probably paint it teal to match the closet door.

We're ordering doors for all these soon-to-be cabinets.  I can't tell you how fantastic it is to have the oven at standing height.  

I'm not sure what you know about induction cooktops, but we had our heart set on a gas stove.  The time and effort it would take to run gas lines to the kitchen wasn't going to work for us.  So, we looked for an alternative that was not the dreaded electric cooktop. Induction cooks faster than gas and you can boil water in less than a minute.  Also, it only heats certain kinds of materials so (while this did cost us some new pans), it won't burn plastic or anything like that.  We didn't believe it until we saw it for ourselves.  We're VERY happy with this purchase.  Originally, spending a lot on this wasn't a priority, but a nice electric range is over half the cost of induction and so…so it goes, right?  I obviously do cook a lot so it's not like it won't be worth it in the end.  

We ordered our countertops from Home Depot and got a good deal, but I do have to say that we don't even have THAT much counter space and it still wasn't cheap.  The turnaround time from order to install was about 3 weeks, but Scott did all the measurements and filled out all the graph paper order forms before we even went to the store to order so that sped up the process, I'm sure.

The plan is to add a wooden bar to the top of the island.  We can't decide between a butcher block style or something with an antique look to it.

There was originally a bar there.  We took away a bit of counter space when we added the cooktop to the island, but we extended the island and when this bar is added back in, all the space should even out to what it was before.

Anyway.  That's a load off our minds.

Victory #2 Another thing that's a load off my mind:  my glucose and insulin-resistant tests came back normal.  This is a relief.

Now we can move into the fall season with clear(er) health and space to bake cookies.  #Victory.

A major meltdown

…was brought on by this purple door.  First, I don't understand why you would paint a door purple.  I don't think you could ever find a way to justify such an act.  Between the purple door and the unicorn room, this place is like the house version of Comic Sans.

Regardless, I've had plans for 2 months to paint this door.  Last week, I bought paint.  

On Saturday, Scott had to work.  He came home around noon and then we needed groceries so I went to the store and ran errands while he napped off an 80 hour work week.  So the day was kind of shot.  We've been making it a point to get out of the house at least once each weekend simply because if we stay here too long we'll go insane. The house is a living breathing version of Comic Sans to-do list.  The plan was to take care of things in the morning and take the dogs swimming at a state park in the afternoon.  However, as I looked around the house at everything that hasn't yet been accomplished, I started to feel anxious.  I took to the door, while I was cleaning up the yard and doing laundry and trying to pack a picnic all at the same time.  

As I was painting this purple door, I found myself getting angrier and angrier.  WHY WOULD YOU PAINT A DOOR PURPLE?, I thought.  I gritted my teeth.  I felt all the frustration I was holding onto over school anxiety, army problems, remodeling stress, and health issues come to the surface.  The door had me in tears.  

You see, this door seemed to be something I could control.  Lately, I've been going to the doctor a lot and I can't control the myriad of things I apparently have wrong with me.*  Last week, for the second time, I was told I have a low platelet count.  What does that even mean, right?  I mean, you can't control your platelets.  

But I could control this door. Of course, I shouldn't have to control it in the first place.  BECAUSE THE DOOR NEVER SHOULD'VE BEEN PAINTED PURPLE TO BEGIN WITH.  I don't understand why some people insist on wasting our God-given free will. So I had to put blue tape around the frame, I had to be calm about it so it would line up correctly, I had to paint gently enough that the Lincoln Cottage Black wouldn't splatter all over me  (it did anyway), and I had to be patient enough to wait for it to dry before I could pull the tape off.  

Anyway, that purple door and all my worries ruined my day.  We didn't leave for the lake until 3:30.  It was a 2 hour drive.  There were no lakeside spots except near some people who seemed to be Russian mafia (and we've been watching The Americans, so we're on alert for such things). But it was too chilly up in the mountains for swimming anyway.  The charcoal wouldn't light because it was wet and Scout's shock collar had a dead battery.  The dogs ended up eating a dead turtle.  By the time we left, it was dark and we stopped at Culver's on the way home.  Frozen custard makes most things better.

*It's really just like one or two things but I'm pretty overdramatic, I guess.

[note: all unedited pictures]

But at least the door isn't purple anymore.

Trying acupuncture

I tried acupuncture for the same reason I bought an Erin Condren planner.  It seems that everyone else was doing it.  However, I don't know if acupuncture is something that's for everyone.

Taking random pictures on a sunny day IS for everyone.

I tried it because I have a health concern and I've read that acupuncture is very reliable as an alternative treatment.  I mean, why not?  I found a place nearby with a certified doctor of traditional Chinese medicine and made an appointment.

I want to reap the benefits of acupuncture.  I want to like it.  I want to see results (see: How long does it take to see results?) Heck, I don't even mind paying for it.  What I don't like is lying on a table for 45 minutes with needles in my skin.

Here is the most important piece of advice I have for you: if you mind needles, at all, don't consider acupuncture as a means of treating anything.

I really thought about backing out the entire time I was in there, but I know that the benefits are greater than whatever weird issue I have with needles.  I don't like needles, but I'm not terrified of them either.  On a scale of 1 to 10, I'm probably a 5 when it comes to being uncomfortable around needles.  For example, when I have blood taken, I can't watch at all, or I'll start to gag (That sounds like a 5, right?).

So they put the needles in at certain points called meridians and the goal is for the needles to stimulate energy and promote healing to organs along the meridians.  I do believe this can, and will, work.  However, I don't care what people say, you can feel the needles.  She put in 12.  Two in my forehead, one in each ear cartilage, two in each hand, one in each leg, one near each big toe.  I couldn't feel the ones in my forehead or toes at all.  The ones in my hands bugged me the most.  Of course, I don't know what this means.

I think, when we get to Colorado, I'll find an acupuncturist who explains things really well.  The lady I went to here was very nice and all, but didn't explain much during the treatment.  She did a very extensive overview of what acupuncture would entail, but I think she was trying to let me relax during the actual treatment.  Also, I'd like to know what her observations are…what does she think the problem could be, etc.

Which brings me to my second piece of advice for you:  if you are antsy and have trouble sitting still, acupuncture may not be for you.  You can't move at all.  You just have to lay there.  I don't know who has time in their schedule to lay on a table in a doctor's office for 50 minutes twice a week, but I don't have that kind of time right now.  I also didn't find it to be particularly relaxing.  The acupuncturist dimmed the lights (which I appreciated) and would come back in every ten minutes to stimulate the needles.  This means they wiggle the needles to make them pinch a bit.  Not a super pleasant feeling.

The doctor wants me to come in twice a week for three months.  I can't commit to that for a couple of reasons:  That's $100 a week.  I don't have that kind of time.  We're moving in four weeks.  The thought of having to do it again makes me sigh.  But…the benefits are what I'm after.

As for side effects, acupuncture is pretty safe.  Here is a list of potential negative side effects.  I will say that I had muscle soreness in my left thigh the day after.  It lasted about 24 hours.  It felt like I'd been doing way too many lunges.  It's odd that this didn't happen with my right one.  Also, I had the acupuncture on Thursday evening.  On Friday morning, I had to have blood drawn at the hospital.  Usually, my veins are hard to find and the lab tech often has to call in a second person to try it.  And I always, always feel a pinch when the needle goes in and out of my arm.  On this day, she got it on the first try and I didn't even feel the needle go in or come out.  Since acupuncture is supposed to open up the organs and flow of blood throughout the body, perhaps that was a positive side effect?

Eh. I'll probably go back this week.

Have you tried acupuncture?