Another health scare…

Last night, I was listening to my husband recap the ENTIRE “Breaking Bad” series in his own words.

I suddenly got a very sharp chest pain, right behind my sternum, that radiated to my back.

It felt like someone ran me through with a hot poker.

I also felt nauseous, couldn’t breathe and my throat felt like there was a lump in it.

I was a bad nurse, and three weeks ago I elected to take myself off of my blood pressure medications (because I was feeling pretty good and was starting to “bottom out”).

Well, last night my bp was 160/110.  Manual.  Yes, I checked it mysef (after my husband freaked when he saw 160/100 the first time).

I had my husband dig through the closet to find some old bp meds.  I also took some heart burn medication and benedryl.

The pain eventually subsided after an hour or so and I conked out.

I didn’t go to the ER because I’m poor and have no insurance.  

This morning I woke up with elevated bp and feeling like hell.

So I saw my doc, and the EKG showed that it wasn’t a heart attack.  She is calling it an “esophageal spasm”.

FML.

But I’m thrilled I didn’t have a heart attack at age 31.

And I am now back on my blood pressure meds.  Someday I will learn to be a good patient.

Take your medication EXACTLY as directed

The lovely hematoma from all the blood work and IVs.  I've had it worse before, but this one is solid underneath and painful.

The lovely hematoma from all the blood work and IVs. I’ve had it worse before, but this one is solid underneath and painful.

Good Lord, this week has sucked.

As a nurse, I deemed it prudent to completely take myself off my steroids.  If you have ever taken steroids, you know this is a bad idea.

In all fairness, I was down to 2mg (from a start of 60mg) and I honestly forgot to take them while on vacation for a variety of reasons.

I was a week or two out and I figured “hey, I’m not dead yet, maybe I can white knuckle some of these withdrawal symptoms and completely be steroid free!!”

I ended up in the emergency room.  Twice.

I woke up Tuesday with muscle spasms/contraction in all my limbs, but especially in my legs.  I could not control the frequent shaking and flailing.

I couldn’t talk.  I could stutter, I could stammer.  No coherent language.

And I was out of it.  I didn’t black out, but I was pretty much unresponsive at times.

Oh and my bp was all over the map, from 150s/110s to 92/palp.

And the sever pain in my lower back was horrendous.  Apparently this was my adrenal glands SCREAMING at me.

So the EMTs were called in on Tuesday to stabilize me and haul me to the hospital.

At the hospital, one I didn’t usually frequent and who wasn’t up to date on my condition, they missed that I was probably going through steroid withdrawal.  They gave me fluid, ativan, and sent me on my way.

I saw the rheumatologist the next day who put two and two together.  Apparently I should have had a cortisol level drawn and probably should have been kept for observation.  Shit.

She put me back on my steroids, wrote out a lengthy taper schedule (down by 0.5mg every two weeks).

I woke up yesterday with similar symptoms.  They weren’t as bad as Tuesday’s nightmare, but I could feel myself slipping.

So Mommy hauled me to the hospital (the one I frequent, to which my medical records are in their computer system), and I got fluid, steroids, and compazine.

I feel like a new person.

The muscle aches are there this morning, but so far I’m able to eat, able to move, able to talk and type.

The lessons learned?

Keep an ACCURATE list of medications and conditions on the fridge for these situations.  In the beginning I had done this religiously, but since I’ve been sick for over a year, I have slacked.

Have someone who knows your situation, knows how you have been recently, and who can advocate for you.  In this case, it was my mom and my husband.  I don’t know what I would have done without them.

And go to the hospital system that is most closely up to date with your condition.  In my area, there are three hospital systems.  I have been to two.

Finally, LISTEN TO YOUR DOCTOR.  Yes, I was permitted to taper my own dose of steroids, but I didn’t realize how poorly my body would react to the withdrawal of a substance I took for over a year.

So after $3,000+ in medical bills this week alone, I’m feeling better, physically.

And I have definitely learned my lesson.

 

Stick a needle in your eye

 

AArrrgh!!

AArrrgh!!

My brother, who is younger and a hockey player, told me that I was very brave and very strong the last time I talked to him.

He said “I have no idea how you deal with the eye injections, I know I couldn’t”

That means a lot coming from him.  He is the big, bad hockey player.  He has knocked out his teeth, taken pucks to the body and sliced open his arm (requiring stitches) when someone landed on him against the boards.

But I didn’t feel all brave and strong last week.

The good news? My eyes are improving.  Minimal inflammation in the left eye (but I still am developing a cataract) and minimal in the right.  But the doc still wanted to inject the right with steroids to “wipe out that inflammation”.

So I endured that circus again.  They do use numbing drops, numbing gel.  But putting the betadine in right before the injection really sucks.  It burns, it feels like someone threw sand in my eyes.  And I can’t blink because they put one of those eye clips in that keeps me from blinking (I felt like I was in A Clockwork Orange).

So the injection itself is painful too.  And it hurts for the next 24 hours.  Like “require narcotics” pain.

I stay away from pain meds.  Just because I have pain everyday, and if I used something for pain everyday (non-prescription or prescription) my liver will be shot by the time I’m 40.  But this eye pain.  Wow.

It hurts to move your eye at all.  Even with a lovely eyepatch (I told the doctor and the techs that I felt like the “Governor” from “The Walking Dead”), when my left eye would move, so would my right.  OWWWW!

Another bad thing about the injection, if he does it right, the pool of medication can be seen in the corner of my visual field.

I keep thinking I see people or shadows walking through my house, even though I’m alone.  Very freaky.

And the pool of meds will probably be there for the next week or so.

The only good thing?  He didn’t cause my eye to hemorrhage this time.  No bloody red ring around my iris.

In other news, I’m starting to use apps on my new cell phone to help track my health.

So far, I have one to track pain, but it can be modified to track any symptom, and one for my blood pressure.

The blood pressure picture isn’t very pretty.  I’m still running 120s-130s/90-110s.  I’m still taking bp meds that wipe me out completely.  Looking at the graph of my blood pressure over the last month, it is a huge rollercoaster.  Great.

But at least I have a portable record that I can take with me to the doctor’s office visits.

I would like to find a better one to manage all my symptoms and their severity (not just pain), but so far this is pretty good.  And free.

Next week my mom is whisking me and Sunshine away to the beach.  I am in definite need of the R&R.  Not to sure about the 12 hour drive though.

People assume that because I can’t work right now, and because I barely leave the house, that I am already relaxing and  enjoying my time off.  Nothing is farther from the truth.

I struggle every day to do basic things.  Take a shower, do the dishes.  A huge pile of laundry is looking at me right now. I end up sleeping a lot due to the medication side effects.  When I sleep to long, my body aches.  And then I stiffen up and can’t move.

So its not fun and games being sick all the time.  TV is boring, I can only read so much or go online so much.  Some days I’m too sick to even do that.

I would love to be back at work.  I miss my patients, my coworkers and the health insurance and pay.

Grr…

Let’s play, Guess the Ailment!!

This is that game show you all know and love in which you guess what could be causing the current symptoms.

Today’s mystery:  why is Mommabel struggling to get out of bed all of a sudden?  Why is she sleeping 12-16 hours per day and waking up EXHAUSTED?  Why is she feeling this awful 5 days post methotrexate dose?

Could it be the fibromyalgia?

How about the autoimmune disease (pars planitis)?

The fairly recent initiation of blood pressure medications (two weeks ago)?

Or a side effect of the several medications she continually takes to keep from going blind?

You have 30 seconds……go!!

 

Thank you for playing “Guess the Ailment”.

Be sure to tune in next time where we discuss Mommabel’s pain complaints and once again play “Guess the Ailment”!!

So I was right..

Yes, my eyes are a little bit worse.  I was right with my earlier instincts.

Saw the eye doctor, he did another steroid injection directly into my left eye.  This one was different ..he put it in a different location than the two injections prior.

This one required him to use that dreaded clamp to keep my eye open, wipe down the surface of my eye with betadine, and inject twice as much steroid as he did last time.

My right eye, which was previously clear of inflammation in January, is now inflamed.  It may need an injection to that eye in two weeks.

No matter how much numbing drops he put in, it HURT.  I mean, took my breath away hurt.  And since he put it in another location, not the back of my eye, I was looking directly at the needle as it was coming toward my eye.

So now my eyeball is bleeding.  Which is expected (I freaked out the first time it happened).  The blood is surrounding my iris, and I can see a shadow at the top of my vision.Image

To add to the fun, I did my weekly methotrexate dose on Friday.  I felt like hell all day Friday and Saturday.

My husband even took Sunshine with him to his boxing class this past weekend.

Yesterday I felt ok.  I HAD to get up and help my husband with the laundry and the house.  I made cookies, I made dinner.

And now, I am completely wiped out.  I slept 16 hours so far.  I woke up, got Sunshine on the bus, then back to bed.

I am up now because Sunshine is getting off the bus in 20 minutes.  And my husband will be at work until 8:30 tonight.

I am incredibly thankful that it is beautiful outside today.  Sunshine should be out with her friends most of the evening.  And one of my friends is coming over for “Mommy-baby dinner” tonight.

She can help with dinner and keep an eye on Sunshine until my husband gets home.

I really can’t tolerate reading or typing too much.  So I’m going to end this here.  I’m just concerned. My bp is still going haywire, this eye is effed up, and I can barely move.

My goal this week is to get to yoga at least once.

Ick.

You know its progress when you can finally sit upright..

Image

© Silverlily | Dreamstime Stock Photos & Stock Free Images

Thank you for the well wishes.  This truly sucks.

But, in trying to remain positive, I will dwell on the fact that I can now sit upright for periods at a time without getting too dizzy and nauseous.

That, my friends, is progress.

The bp meds are completely draining me.  As if I’m not drained enough.  But today was less draining than yesterday.  If that makes sense at all.

I did spend most of the day sleeping, and i haven’t done that in awhile (two weeks? ha!)

I am still trying to hold up my share of the housework, and actually did the dishes last night without too much difficulty (if I lean against the counter, I can steady myself).

I have had a few near misses while furniture surfing.  But those incidents are diminishing.

And I stopped taking my blood pressure every five minutes.  Being a nurse can really cause some OCD when it comes to stuff like this.

And the headache from hell which first alerted me to this issue is slowly fading away.  I am still confused as to which is the best pain medication for this situation, because it does feel similar to a migraine, but not entirely migraine-ish.  And I can’t take both the tramadol and the Treximet at the same time (something to do with serotonin), so I end up just randomly picking and seeing if it works.  So far the Treximet is winning.

I try not to think of the internal damage caused by this lovely drug cocktail.  Again, the nursing thing.  I have said it numerous times on this blog.  Sometimes having an education in the health field is dangerous.

It is bad enough reading all the fantastic side effects associated with these medications, it is another to see them in living color throughout your career.

And sometimes my mind will enter the never ending loop of medicines.  Example:  ok, if I am taking the steroids for this long, my bones might be weaker, should I take a calcium supplement?  But with some of these autoimmune diseases, there is a risk of kidney stones, so I shouldn’t take the calcium.  The steroids can also cause diabetes, should I be taking my blood sugar?”

It truly can go on like this forever, given my rather large list of medications I now need to take.

Then there is the other way of thinking.  My husband’s friend works at a health store.  I have been in to see his boss several times over the past year as I was just feeling worse and worse but had nothing to actually “test” for yet.  She is a naturopath, and thinks I should be treating this completely through supplements and diet.

I can understand that approach.  Herbs and natural products were there centuries (more than a millennia?) before modern day pharmaceuticals.  But I’m actually scared to come off the medications that are keeping the inflammation to a lower level.

That’s enough for tonight.  Hoping I feel better tomorrow.