Sunday Funday!!

My husband has been counting down to this day since the Superbowl.

Now living with my parents, it is even more fun.

We would come over here on Sundays anyway, but now I have my stuff here and the ability to crash if I need to.

I survived my first work week.  I’m only doing 5 hours per day, but that is enough to kick my ass.

Trying to figure out if the fatigue is fibro related or autoimmune related.

I can tell the difference between the types of pain…sharp pains in my joints is usually autoimmune related.  The all over body ache, primarily in my muscles, is fibro.

The fatigue I’m feeling right now is slightly overwhelming.  It is taking extreme effort to do anything today.  My arms feel weighted, I feel like I’m walking in jello.

Also, I had a migraine from hell last night.

I’ll just blame everything on coming off of steroids.

I do get labs done this week, and I see the docs next week.

I have noticed an increase in floaters, but I’m not panicking yet.  I’m determined to wait it out until my appointment in October.

Time to get dressed up in front of the TV.  GO STEELERS!!

And the hits keep coming

Not a very happy 4th of July for me.

I didn’t think finances could get worse.  I was wrong.

I have yet to start the Plaquenil.  I have been six weeks without a dose of anything to kick down my overactive immune system, other than the steroids (and clearly, those are not enough).

I have been trying to conserve my eye drops, only doing them every couple of days because there are no generics available.  And they hurt.  Bad.

I got a scare this morning.

My husband wakes up at the crack of dawn to go to his primary job.  He only had the bathroom light on as he was getting ready.  There was a tiny bit of light coming through the windows.  He shuts off the bathroom light and suddenly a huge black spot appeared in my right eye.  And only my right eye.

I haven’t moved so fast in months.  I flew out of bed and into the bathroom to see if my eyes looked any different.  Nope, no visible changes.

So I tested it out again.

Yep, big black spot in the center of my vision when I shut out the light.  Fuck.

So I hastily put in my eye drops.  Endured the burn.  And finally the black spot went away.

So I’m scared.  Again.

I was crying yesterday (about financial issues) and when I was done, it looked like the insides of my eyes had fogged up.

I cleaned my glasses.  Nope.  Not dirty.

Apparently crying did something to inflame my eyes.  They are still a little foggy today.

It is really hard to be chronically ill.

Happy 4th of July.  Please consider checking out/sharing/donating at my gofundme page.

All donations are greatly appreciated.  All money goes directly to my medications, food, keeping a roof over my head.

Thank you.

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.

 

Quick update and women’s issues

Saw the eye doctor this week.  The insides of my eyes look “foggy” and I’m seeing more lights flashing.  But not more floaters.  I have difficulty with text again, had to turn up the font size on my phone and Kindle.

But my eyes aren’t getting worse, per se.  Apparently the cataracts as a result of the steroid eye injections are causing cataracts to form.  Fantastic.

My liver numbers haven’t changed.  

I see the rheumatologist this week to discuss the plan now that I can’t take methotrexate.  The good news is that I can’t take methotrexate.

Another thing they don’t tell you when you take steroids or methotrexate is that women will have increased issues with their menstrual cycle.

I know many women go on birth control when they are on these meds, but I can’t tolerate hormonal birth control methods anymore, and I once had an IUD imbedded in my uterus.  I’m not looking to repeat that adventure.  

We use other methods.  But maybe the BC would help the menstrual issues.

Apparently, when on these meds, the flow is heavier and cramps are worse.  Way worse.  Also I am completely worn out, way more than when I wasn’t on these meds.  My poor husband.

And my cycle is very unpredictable.  I’ve been a week early to a week late.  Fun times.

So today isn’t fantastic, but at least my liver isn’t worse and the inflammation hasn’t increased in my eyes.  

Yay for small victories!

Why can’t I sleep?

Fibromyalgia is cooperating with the steroids to rob me of sleep.

Well, at least tonight.

I have always had a bit of insomnia from time to time since I was a teenager.  Fibromyalgia heightened this ailment and one time needed to be alleviated with Ambien.

But recently things have been getting really “out of whack”.  With the addition of the blood pressure medications, I have begun to require larger amounts of sleep.  For the past two months, I have been going to bed from 10-11 pm and waking up at 6 with Sunshine.

Then I’ll go back to bed from 7 until 11 or even 1.

That happened yesterday, and I think my poor, confused body is torturing me for the excess sleep.

But the sleep is so profound, it is like I struggle to escape from its grips.

I can feel myself trying in vain to wake up, only to be thwarted and thrown back again into deeper stages of sleep.

And the dreams are so vivid.  Like watching a movie.  I try to write them down, but sometimes it is too bizarre, or I can only feel the outline of the dream in my brain.

So I stayed up all night tonight.

At first it was reading a good book.  Usually I will drift off to sleep about five pages into my latest treasure and my husband will have to gently remove my kindle and glasses.  But tonight, he came to bed and I was still wide awake.  After two pain pills and my usual plethora of medications that make life somewhat tolerable right now.

So I moved to the couch.  Usually when this happens, I fall asleep within an hour or two and my cell phone alarm wakes me up.  But not tonight.

I don’t know if it was the book or the massive quantities of sleep from the day before, but even after a dose of Benadryl, I was still wide awake.

And here I am, writing a blog post at 5:30 in the morning.

It is pointless to attempt to sleep now.  Sunshine will be waking up in 30 minutes.  My husband is waking up early to take her to school because she has a huge project she completed and I don’t want her to take the poster on the bus.

Maybe then I can slip into a deep sleep.  And wake up in time to get Sunshine off the bus at 3.

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…

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.

SPRING BREAK!!!

Ah, yes.  A wonderful time of year.  Here in Texas (at least in the area I live in) all the school districts have a similar calendar.  Including the colleges.  So both Sunshine and my husband are off this coming week.  My mom teaches as well, so she is off.  And its my birthday this week.  Oh and SXSW is going on.

I would have loved for something like this to occur when I was growing up.  “Spring Break” referred to the two days I got off from school right before Easter.  But if it was a bad winter, most of those days were “make up” days so that the school district could get 180 days of school in before June 30th (as per law).

Sunshine had an entire week off for Thanksgiving, nearly two and a half weeks off for Christmas, and now spring break.

She is already enjoying it.  She has been outside most of the day today.  And she came back from my parents house with shoes that were still oozing mud.

I just hope my health can improve so that I can do things with her this week.

I’m still couch bound.  But that’s an improvement from bed-bound, which is how I spent my morning.  With my legs elevated.  My blood pressure bottomed out.

I understand that medications (especially in my body) are pretty potent.  I just don’t like the blood pressure yo-yo.  I feel awful.

I have been through childbirth (assisted with an epidural).  I have fibromyalgia.  I have a 17 year history of migraines.  But nothing was like that wicked headache I had last week as a result of my blood pressure.  That was such intense pain.  Not in my usual migraine areas.  I swear I still feel the effects of it.

Its like a never ending loop.  I feel awful so I can barely navigate through my apartment, let alone exercise.  I gain weight as a result of the meds.  I also have lovely side effects like tachycardia and hypertension.  But in order to (naturally) deal with those issues, I have to exercise.  And lose weight.  Grrr!!

Ok.  Positive thinking.  Sunshine.  Just watching her interact with her friends, with my husband…its such a treat.  She is quite a mighty little human, and she will definitely be a force to be reckoned with as she grows.

The things that come out of her mouth are priceless.  Just seeing the way she thinks, how she goes about solving problems or analyzing a situation is incredible.

She blows me away almost every day with her intellect, her sense of humor and her zest for life.  I am truly blessed to be her Mama.

My goal this spring break is to relax and have fun with my family.  I’m sad that I will probably have to skip SXSW because of my health.  But maybe I’ll get a boost of health later in the week and I’ll be able to at least wander downtown and find some great music to listen to.

And I’m grateful there is no snow on the ground 🙂

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.

Under pressure

© Krzysiek_z_poczty | Dreamstime Stock Photos & Stock Free Images

© Krzysiek_z_poczty | Dreamstime Stock Photos & Stock Free Images

I just can’t win. Yesterday (and most of the day before) were absolutely awful.

I was hit with one of the most intense headaches I have ever experienced. And this is very meaningful because I have had migraines for the past 17 years and have been to the ER plenty of times to deal with the pain.

This one was different. My migraines are usually left-sided. Its usually an intermittent to constant pain that I can identify pretty quickly and take the appropriate medication (Treximet). They haven’t been getting to the “point of no return” lately because I have a good supply of the meds right now and don’t feel I need to ration them.

Well, Tuesday, I was hit with a severe headache that I really couldn’t identify. The pain was across my forehead, down the middle of my skull (I call it a skunk headache) and then across the back of my head and neck. The pain came on quickly and was absolutely intense. I’m talking 9/10 on the pain scale. I was literally lying in bed, pulling my hair because that sort of distracted from the intense pain I was experiencing.

I did check my vitals (like any good nurse) and my bp was 150/100.

The pain was intense. I mean, teeth grinding, grab on to the closest thing and scream pain. I didn’t go to the ER because I have no health insurance and I’m already in over my head as far as medical bills go. I took the Treximet which helped, but not as quickly and not as completely.

I finally fell asleep (with a pillow over my head, vicks vapo rub coating my face and biofreeze coating my shoulders) around 8:30 p.m. I woke up at midnight, absolutely exhausted. But still in pain (it was about a 3 at that point). I again took my Treximet and went back to sleep.

I got up with Sunshine at 6 and still had the pain. My blood pressure was still high (112/98) so I did the entire routine over again. This time I could barely move. I mean, I was so dizzy that I had to “furniture surf” so I didn’t fall. I had nausea, I couldn’t think straight. But Sunshine got on that bus. She was clean, fed and happy.

I woke up to my mom taking my pulse. I had sent her a text earlier in the morning telling her what was going on. She tried to get in touch with me (I had my phone on silent) and when she didn’t get a response she just came over.

I am so happy that she did. My blood pressure at this point was 112/100 and the pain wasn’t as severe, but still present. My mom made me call my primary care doc and she drove me to and from the appointment (and she paid for it).

My husband was basically clueless. He also has high blood pressure (usually 140/90) but he has never had any symptoms. He was at a loss for what to do for me. He had good intentions, but just didn’t know what to do.

So I went to see my PCP. The doc thinks the headache is from the blood pressure, or that my migraines are getting more intense because of the blood pressure. I already knew that I was drug sensitive. I had no clue I was blood pressure sensitive as well.

For perspective, a blood pressure like 112/100 is concerning. But some people are able to function with consistently high blood pressure without any sort of symptoms. I have seen people with bp as high as 200/120 and not feel it. That is why it is called “the silent killer”.

I have never had any problems with my blood pressure before. It actually runs low. Normal for me would be 98/70.

The doc is also very concerned about the associated symptoms (headache and dizziness). She actually wants me to use a walker.

So, she started me on a blood pressure medication. Fantastic. I am to call if the pain gets worse, if my bp doesn’t drop or if I have any more problems.

I am calling her this morning because the pain is still present. Maybe 3-4/10. But I’m concerned with taking more Treximet, as it is a vasoconstrictor and can increase blood pressure. I’m hoping she can help with something else for the pain.

I am heading back to bed now. Doc thinks it may take a few days to settle down.

I still don’t know why this happened. It could be the steroids. Or the weight gain. Or stress. Or something completely different.

Grrr!! Can’t something go right for once??