General Update March 2020

I don’t really have anything big and exciting to talk about.

I refuse to spend time discussing the mass hysteria that is Covid 19. Wash your hands. Stay home if sick. Don’t touch your face. Don’t shake hands with others. Minimize the touching of shared spaces. Consider voting blue no matter who since Trump fired the entire pandemic team in 2018. There, it’s discussed. Oh. I will say that so far my household is healthy. And the kids are out of school until at least April 6th. Now it’s discussed.

We’re slowly doing some spring cleaning around the house over the span of March. Hopefully more so now that the kids are home for three weeks.

This past weekend’s project was Sammy and Lucas trading rooms. Lucas had the biggest room in the house, outside of the master bedroom, and utilized about 50% of the provided space. Sammy, meanwhile, who still plays with toys desperately needed storage and thus most of her belongings were on the floor, and really she needed more room in general because even after I bought her storage, there was no place to put it in her room.

So they traded.

That was a lot of work. Two rooms were torn apart and reorganized. Plus, while we were at it, I had them both sort through all their clothes and donate shit that they were just never going to wear, or that didn’t fit. I’ve already hauled 1 load to goodwill and have another load to go since they are still sorting as I wash the 10 loads pulled out of the bottom of various closets. I also hauled a full load of garbage to the dumpsters behind the apartments in our neighborhood. There was just so much stuff beyond saving and it wouldn’t all fit in our bin.

There rooms are back in proper order now, so that has settled. I do have a storage closet in Sammy’s new room that I want to go through. But that can wait. It’s behind a shut door.

My lower back, however, is killing me. Thank goodness for CBD lotion and the tens unit my mom bought me. (School is on lockdown so Thomas and I don’t have access to the weight room. Which is a bummer, but understandable.)

Work is going well. I, unfortunately, missed a full day this past week due to an ear infection. I was put on the proper anti-biotics and by the time I returned to work, they had kicked in and I was feeling much better. Then I missed a few hours Friday because I went into anaphylactic shock. Apparently I’m allergic to seasoned fries from Popeye’s. I probably could have suffered through the rest of the workday, but things were very slow with barely any appointments, so I was encouraged to go home and double the Benadryl dose I’d already taken.

Honestly, I think that’s about it for now.

Have a flower in these troubling days

Pain Management

Pain pills don’t work. Muscle relaxers don’t work unless I’m given enough to keep them in my system at all times. My doctors will only agree to 15 a month to use once the (daily) headaches start. They do nothing once the headaches start but they do work to prevent them. The doctors are worried I’ll become dependent and won’t enable me to live pain-free.

We disagree on whether or not dependence is a bad thing.

These days the bulk of my pain is in my shoulders and neck which then leads to tension headaches. Loosening those muscles and keeping them loose makes the headaches nonexistent.

But alas.

One thing they were willing to do for me is to get me in Physical Therapy which is doing wonders. But only gets me through part of the week. I need to be doing those exercises twice a week, but the set up on the home front makes that hard as there really isn’t a place to tie a therapy band down.

In unrelated news that is going somewhere, Thomas is currently going through pre-season workouts with intent to join the football team in the coming fall. He work-outs with the team Monday-Thursday but goes back over the weekend to work out some more with a buddy.

Yesterday he needed to blow off some steam and asked if I could drive him to the school so he could work out. I threw on some clothes and grabbed my keys and a book, fully intending to read while he worked out.

Then I smelled the smell of a weight room. And I’m telling you, that smell turns me jock every time.

I hate sports and I hate working out, but for some reason, I love to weight lift. I’m not interested in finding the max I can lift. I like a reasonable weight with a few sets of 10. Long and slow. I honestly crave regular access to this type of workout.

So I entered the weight room and immediately forgot about my book. With Thomas’s approval that I lift with him and a promise that I’d ask for help if needed, I started working out alongside him.

Chronic pain means I need to respect my limits. I can lift higher, but I went to a happy medium so I didn’t hurt myself further. I was able to really work my muscles and help take control of my health.

Of course, I woke up Sunday morning regretting life, but it was still a good type of pain. I’d earned the right to hurt like that by actually using my body.

We went back to the gym a few hours after I woke up, and picked up a friend and teammate of Thomas’s. They worked together spotting each other and trying to increase their maximums in various lifts. I tied my therapy band to a solid post and worked out my sore shoulder muscles. It did wonders in relieving the pain in them.

So I think that’s the plan. Saturdays we’ll go and we’ll lift together. Sundays we’ll go and I’ll work on my therapy bands. His friends are invited along so long as there is no fighting and no one makes fun of me for how I exercise.

Thomas assured me he’d punch anyone who did.

And I informed him that broke the no fighting rule.

But I think we’ll be fine.

Anaphylactic Shock PSA

Ok, y’all.  I’m going to put this out there because apparently my husband, who’s been living with me and my allergies for 17 years now, didn’t know this.  Hell, even I didn’t realize some of this.  So I’m going to do my best to make this public knowledge.

First, anaphylactic shock can be progressive.  It gets worse with each exposure to the allergen in question.  This is so important for you to know.  Frequently, as with me, your throat doesn’t close and kill you the first time you are exposed to something.  It’s not uncommon to not need an Epipen (or even Benadryl) the first time someone is exposed to an allergen, even if they are indeed suffering some symptoms of anaphylactic shock.

But what are the other symptoms?  The “lesser” symptoms?  Let’s look at them.

Some of these symptoms are more obvious than others so I’m going to break it down as it applies to me.

The first time I realized I was allergic to apples, some 17 years ago, it was because the apple sauce I kept eating for lunch while pregnant with my eldest made my throat kind of itchy and feel like it was a touch swollen.  Swallowing was slightly difficult but not anything significant.  I can’t stress enough that this was extremely mild.  I thought I just had a touch of a sore throat like I was getting a cold, only it only happened when I ate the applesauce and there were no other cold symptoms that ever showed up.

What I know now is that I built to that and hadn’t even recognized the earlier symptoms.

Here is what an allergic reaction, that doesn’t always involve my throat, looks like to me now that I know what to look for.

First, my stomach is upset.  It feels overly full, like I just ate a huge feast, even though I only ate a normal amount, and I’m maybe a bit nauseous but always extremely gassy.

Then an hour or so later my chest starts to feel tight.  It’s like I have bronchitis (the best comparison I have because I’ve had it so many times) only I’m not coughing.  All in all, it feels like my lungs are being seized and it’s hard and even painful to breathe.

Somewhere in this comes the ominous feeling of doom.  Something isn’t right.  In fact, something is very very wrong.  If I’m paying attention to it and recognize the symptoms, then I pin it down to something being very wrong in and with my body.  Folks, this is because I’ve poisoned myself and am potentially dying.  I should feel like something’s wrong.  Don’t discredit this feeling.  It’s almost like a panic attack without the racing heart.  It’s just ominous. 

Around that time, I sometimes, but not always, feel like I’m having a hot flash only it doesn’t go away like my hot flashes usually do.

Usually, if my throat is going to come into play, it’ll happen about 2 hours out.  A mild reaction means it’s just sort of scratchy.  Maybe a touch of difficulty swallowing, but not so bad that I can’t take a small handful of Benadryl.  Of course, a serious reaction means that handful of Benedryl needs to instead be liquid and if you can’t even do that, you need to use the EpiPen.

Some would say that you should have used the Epi earlier in the process.  Talk to your doctor about when it’s an Epi emergency versus when it’s just a Benedryl emergency.  The next step is to get yourself to an ER for steroids and shit.  Don’t do what I do (which is to take too much Benedryl and sleep off the maybe dying process).  Seriously, don’t do what I do.  One of these days I’m going to wake up dead.  Also, and I can’t stress this enough, if you had to use your Epi it is 1000% time to go to the ER.  Don’t drive, call 911.

Now another point to make.

I described this as a process that takes hours to fully develop.  This is not even close to always the case.  I described it this way to really fully make the point that just because your throat didn’t close up immediately, doesn’t mean you didn’t have a reaction and it doesn’t mean that it won’t.  

I’ve heard plenty PLENTY of stories where someone was exposed to something they shouldn’t have been and it took all of 30 seconds for their throat to close and the only reason they survived is because there was someone right there with access to an EpiPen who knew how to administer it.

Anaphylactic can play out in hundreds of ways.  It can take on any combination of symptoms and it can all happen really fast or it can take hours for a reaction to develop.

The first reaction can be so mild that you don’t even realize you had one at all, allowing you to repeatedly expose yourself to the allergen until it finally clicks what is happening.  Each exposure getting a little worse than the previous one. 

Example:

Somewhere over the last couple of years, I’ve developed an allergy to jarred red sauce for like pasta or pizza.  I’ve been tested and I’m not allergic to any of the individual main ingredients (tomatoes, mushrooms, the herbs) so we’ve collectively (including the doctor) come to the conclusion that it’s the preservative.  The solution for the past few months is that I’m only allowed to eat fresh, homemade, red sauce.  Most pizza chains are ok.  (Papa John’s is not.)  Pat has his grandmother’s recipe.  I am fine.

However, two nights ago I may have had a mild reaction to Pat’s homemade sauce.  I don’t honestly know because I happen to have a cold and honestly, early reactions already look like a cold so it’s stupidly hard to tell the difference.  I just know that my chest gradually began to tighten and my throat became compromised.  But that happens anyway with a cold?  I took a couple of Benedryl and went to bed.  I still don’t know if I had a reaction or not.

So I guess the next time I expose myself to it, I need to make sure I’m otherwise healthy.  Only then will I know for sure.  

(Also, if I’m allergic to red sauce I’m going to straight-up riot.)

There is no one way to experience anaphylactic shock.  It doesn’t look the same with every person and it doesn’t look the same with every allergen and it doesn’t look the same with every exposure to the same allergen.  It’s progressive with time and exposure.

So learn the symptoms.  Learn to listen to your body.  And if someone says they are maybe having a reaction, don’t discredit them just because it doesn’t look like you see on TV.

Transfusion

Despite getting an iron infusion about a month ago, as of Friday, June 21 my hemoglobin is sitting as a 7.6. With the healthy range being 12-16, this means I’m trying to function with about half as much blood as I need to be a functional human being.

All things considered, I’m doing spectacularly at this.

I honestly thought that the brain fog and zero spoons (refresh yourself on spoon theory if needed, please) was because I’m trying to juggle school/work/family/and now a job hunt. (More on that last part later.)

Anyway. I clearly can’t stay at a 7.6 so I wasn’t surprised when I received a call from my hematologist’s office first thing this morning. I just didn’t know what the plan of action was.

Turns out I’m going in for a blood transfusion on Wednesday the 26th of June.

I’m actually super excited for this.

Which I guess might sound weird. Blood transfusions make people rightfully nervous. They aren’t standard protocol unless there is trauma and thus are associated with accidentals and disasters and other things that involve massive blood loss. So there is a stigma to them, is what I’m acknowledging.

However, this is not my first blood transfusion. It’s probably closer to my 5th. Though I don’t have an exact count.

Needing the occasional blood transfusion is just a fact of my life now.

Usually, I get iron infusions, which is just basically iron particles suspended in like a saline solution, that get sent straight to my bloodstream via IV. I get those every 3 months, or so. These force my bone marrow to make blood. But it seems the last one either didn’t work or there is something going on.

Possibly a bleed. My iron levels are great it’s just my hemoglobin that’s super low. So this indicates I’m bleeding somewhere. Which probably means more tests. Which I don’t have time for. So I’m super stressed about that.

Anyway, I’m writing this and posting this as it happens. I didn’t want to queue it. So this is fresh news. I’ll follow up next week, or so, with news about the job hunt.

Keeping a Finger on the Problem

I have a new app recommended to me by my therapist called HeartRate+ Pro that I’m supposed to use for 5 minutes, 3 times a day (or 15 minutes once a day) to learn how to better control my heart rate.

The idea of the app is that the camera flash tracks your pulse while you breathe in time to the preset pattern. This breathing pattern is supposed to trigger the ideal heart rate.

So far I’m having limited luck with it. But it’s early yet and I’m not using it religiously like I should.

I need… I need to get better about that.

Because the thing is, if this tool can help lower my heart rate, I can start ADHD meds all the faster!

Post-Op

I had that surgery this morning. It went really well. I’m in recovery mode at home just kinda riding the oxy high. They gave me oxy which is a lovely thing that they did.

I’m going to keep this really short because I’m hyper aware how stoned I am right not. Legally and rightfully. But uh…

Anyway, life is mellow today. I return to the chaos of finals week tomorrow but I’m giving myself today to just heal.

So Hi. I’m here. I’m alive. Not that there was a question on that. But I don’t even feel like death, except for my throat from the tube. I’m just sort of quiet and mellow and when provoked, silly. But there are worse ways to be post-op.

Hmm… this needs an image…

This candle is a lot smaller than this photo implies. It’s the mini candle. Good stuff.

So this candle was bought from DnD Apothecary and is super amazing. It came in a bundle with a metal D20 and a small wooden treasure box just big enough to hold 2 D20s. Luckily, I have a second metal one because, well, I also have a larger version of their candles, this one in the Woodland Ranger scent.

They are a small etsy based business but I really love them!

(Disclaimer: No one is paying me or asking me to plug them. I stumbled upon this person on Tumblr. Followed the link to their store. Bought a couple of candles. Plan to buy a couple more. And thought I’d share the joy that is this store with all of you. I really love their candles. They have soap too, but I have not tried it.)