Friday, April 25, 2014

Ok, so I disappeared for a bit...

Sorry about that. The med that Dr. Fraser put me on - Ativan - worked SOOOO well at first at controlling the vertigo that I didn't have time for the computer. I had stuff to DO! And then it stopped working as well, and that kind of threw me into a depression. And then I got sick. So. Yeah. That's where I was n stuff.

The MRA of my head and neck came back normal. I've had the neuropsych testing. That was a long day. Seven hours (or so) of doing math, vocabulary, sorting, making shapes out of blocks, remembering stories, remembering lists, etc, etc, etc.. And then taking a 175 question survey about my mood and other things like that. All kinds of fun. That took a lot of spoons. I mean a LOT of spoons. I've done nothing, basically, since the test, and that was on Tuesday.

So I need to get ahold of Dr. F's nurse, and ask her if I can increase the dosage of Ativan. I felt so goooood while I was on it that first week...and still ok into the second and third week. Now, however, I just don't feel the benefit. To be fair, it might be because I'm sick. I have had a stuffy ear (ear infection, maybe? without pain? in and of itself can cause vertigo!), a cough, and congestion, and then last night I had a very, very yucky tummy. So maybe it's not that the stuff isn't working, it's just that I've been too unwell for it to work. Guess we'll see.

Being sick seems to make the POTS symptoms worse, too, of course. And everything takes more spoons than usual. I've been tachy for days... hr running in the 130s while I'm doing nothing. Yay. Always fun when it feels like your insides are vibrating.

My wife has been sick, too, but she's out of sick days at work, so she's still working hard and then coming home exhausted and feeling like crap. The kiddo is sick, too. It's a fun household right now. Really. Anyway, all of this has culminated in a disastrous house. I need to get to feeling better so I can work on it.  I finally begged the kid to load the dishwasher and run it because nearly every dish in the house was dirty. I'm working on the oomph to unload it and load it up again. And I MUST get into the shower today. I can't stand me. I think I ran a fever last night, and it broke in my sleep. I woke up in a pool of sweat. Yuck.

Aren't you SOOOOO glad I took the time to update my blog today? Yeah. I thought so.

Friday, April 4, 2014

Good drugs!

Ok, so my neurologist put me on Ativan for vertigo. It works WONDERS. My world is mostly stable for the first time in FOREVER. I love it! Unfortunately, it also makes me sleepy. So I'll go and do and get things done, and then I need a nap. LOL

Let's hope I can stay awake while I need to this weekend. I'll have my 2yo niece, KK, while my brother, his wife, and their son all go to a gymnastics tournament of some sort. I do have to admit, watching her here is a lot easier than watching her at her home. Here, she's calmer...just curious about what I'm doing, usually. I can handle that. I'll have her for about 9 hours by myself tomorrow, though. Could be interesting! I got the stuff to make banana oatmeal chocolate chip cookies. We can have fun making them together. And thanks to the Ativan, there's a good chance we'll actually be able to do it. :)

Saturday, March 29, 2014

The Spoon Theory applied

I know the Spoon Theory has been going around for years, but I hadn't actually read it before. I finally did, and it makes a ton of sense. I'm going to link to it here, and I'd really like my close friends and family to take the time to read it...then read my comments below.

Ok, now that you've read it, this is my breakdown of how many spoons it takes me to do certain tasks...on good days, I have maybe 12 spoons. On average days, maybe 10. Bad days, sometimes as few as 6.

  • Showering: 2 to 4 spoons, depending on whether I shave and wash my hair
  • Dressing after a shower: 1 spoon (Dressing other times doesn't generally require a spoon)
  • Combing my hair after a shower: 1 spoon
  • Blow drying my hair after a shower: 1 spoon
  • Shopping in a small store, like Dollar Tree: 1 spoon
  • Shopping in a large store, like Walmart: 2-4 spoons
  • Cooking a simple meal: 1 spoon
  • Cooking a complex meal: 2-4 spoons
  • Loading or unloading the dishwasher: 1 spoon
  • Wiping down counter and stove: 1 spoon
  • Vacuuming: 1-2 spoons
  • Taking the dog out multiple times: 1 spoon
  • Straightening the living room: 2 spoons
  • Babysitting: 4+ spoons - especially if the dogs are hyper
  • Visiting family when the kids are there: 2-3 spoons
  • Visiting when the kids aren't there: 1 spoon
  • Switching laundry over or taking it out from the dryer: 1 spoon
  • Folding laundry: 1-2 spoons per load
  • Paperwork: 1 spoon for every 15 minutes
This is why my house is a mess most days. This is why when I am invited to dinner or to visit, I sometimes have to say no. This is why I sometimes have to turn down babysitting, even though I would be doing it with help. It isn't that I don't love you, or that I don't love the kids, or that I don't WANT to spend time with you. It's just that have only so many spoons.

Friday, March 28, 2014

Feeling so much better today!

I saw a new Neuro this morning, and I am walking away with MUCH more hope than I had yesterday. She flat out said that autonomic dysfunction is out of her scope, but she in no way discounted my suspicions. She is going to treat my migraines and vertigo starting now, and she is sending me for the testing that is available in this area for vertigo and memory loss, including an MRA of my head and neck, an EEG, neuropsych testing (it makes sure each section of the brain is functioning, it doesn't ask how you feel about that). She is sending me to a specific ENT that treats her friend and husband for vertigo, and who will refer me to Iowa City if need be. Once we get this out of the way, if I am still having problems, she will refer me to Chicago for autonomic testing and treatment. She is LOOKING FOR AN ANSWER, and I didn't even have to beg.

Thursday, March 27, 2014

I'm going to scream and scream and scream until I can't scream any more.

I had my tilt table test, finally, this morning. Before I got there, my heart rate and blood pressure were being wonky as usual. I had high hopes. But during the test, my blood pressure stayed a nice, steady 120/80 and my pulse stayed a steady 80 beats per minute...for a full thirty minutes.

ANY other freaking time in my life, my bp and hr will change quite a bit during any given five minute period, let alone when I go from laying down to standing. But this time? This very, very critical time for it to be wonky? The picture of perfect health.

So, we're going on 22 months without a diagnosis. Going on 22 months without being able to drive, work, read a book, think, or do anything even slightly physically demanding. This is frustrating as hell!

Sunday, March 23, 2014

Well Shit

Throughout all of this, once I read about dysautonomia and POTS, I said, "Wow. There are women out there who actually faint when they stand up. Thank the gods, I'm not one of those women. I only ALMOST feel like I'm going to pass out. I can deal with this."
Well guess what?  Last night, I stood up to go brush my teeth, and the next thing I know, Jen is asking me, "Did you just lay down on the floor or did you pass out?"

I have no idea how to deal with this now. It's a whole new ballgame. The one thing I held onto is gone, and I don't know if it's just a one time thing, or if it's going to happen again. I have no idea if it's going to happen occasionally, or frequently, or all the damn time. I have no idea how to deal with this at all. This was one club I didn't want to be a part of. This was one thing I had firmly checked in the "positive" column, and now it's questionable. What am I supposed to hold onto, now?

Thursday, March 20, 2014


So Jen had surgery today. We were told to be there at 8:00 for a 10:00 surgery. Got there early...and after an hour or so, they realized we were there MUCH earlier than we needed to be. We actually needed to be there around 10:00 for an 11:20 surgery. Ooooops. Gotta love waiting to wait! And then more waiting after that, as the person in surgery before hers had complications, so they ran late. *le sigh*

The GOOD news is, she did very well in surgery. No complications. She came out of anesthesia well, and not in too much pain. By the time we made it home (5:30ish), she was mostly just "a bit uncomfortable".

So all things considered, it wasn't a bad day. Just a long one! Good night,'s time for a nap!

Wednesday, March 19, 2014

Goings on and stuff

So the other day, we had to take my former-step-son to a doctor's appointment out of town. This included picking his mom up in yet another town....driving for a couple of hours, wandering around an antique shop or two while we waited for the appointment time and the appointment itself, then the drive home.  Oh, and we had to stop at Wallyworld once we got back into town. That's a LOT of upright-ness for me in one day. On NO sleep. Yay! Oh yeah, then we decided to rearrange the furniture in the living room that night, too.

Needless to say, yesterday, I was WIPED OUT. I slept several hours the night before, then got up for a couple of hours, and zonked out again for a six hour nap.  The only thing I accomplished, and didn't even finish THAT, was loading the dishwasher. And I made three hamburgers. Oooooh, ahhhhhh.

I'm hoping that's enough rest for me, though, for the rest of the week, as Jen is having surgery tomorrow. It's a simple procedure, but it requires us to be up at the butt crack of dawn, more upright-ness, and, of course, I doubt she'll be up to doing much tomorrow night or Friday. I had the same surgery about a year ago, and I only required one or two doses of pain killers afterwards - hopefully, it will be as easy for her. Crossing fingers.

This is just a mishmash of my last couple of days and my next couple of days. I didn't really feel like writing, but the counselor wants me to do it. Here I am. Doing my homework. LOL

Tuesday, March 18, 2014

Kinda Quiet

I don't really have too much to say lately. Things are things. Haven't been sleeping well.

Wednesday, March 12, 2014

Not feeling very diva today...

Today is not a good day. I overdid it yesterday, and I'm suffering for it today.

Sometimes, it seems the physical wonkiness makes me emotionally less stable. I mean, sure, there are days when my vitals are fairly stable and I'm bummed anyway, because this whole situation sucks. But when my blood pressure and heart rate are fluctuating wildly, it's as if my body is forcing a break down. It's difficult not to feel anxious and upset when my heart rate is brain says, "Oh! I know that feeling! That happens when I'm scared! Or really anxious! Or really freaked out about something!" and then my mood responds in kind. It seems today I'm just a few seconds away from tears at any given time. I haven't broken down yet. But it's coming...and soon.

I try not to break down too often. Not because I think crying is bad. But because I'm afraid that if I start crying with any regularity, I might not stop. I'm not a fool - I know that it's important not to bottle up your feelings. I know it's ok to cry. I know it's a necessity to release stress hormones. But I also know that since I have dealt with depression for decades, I could easily dive into a pool of self pity and not climb back out for days, weeks, months, or even years. I can't let myself do that again.

No matter how many times I get angry and frustrated at things I cannot do, I have never said, "Why me?" or "This isn't fair!"  That would imply that I was singled out for this crap. I wasn't singled out for it. It just IS. There's not a whole lot I can do about it, so there's no point in thinking like that. I DO think that this isn't the way things are supposed to be at my age. I shouldn't have to be wearing TED hose and using a shower chair before I'm even 40. I do wish I could do the things I used to be able to do. I do wish I could live the way I used to live. But, well, I can't, for now. Maybe after I get a diagnosis, they'll be able to find a drug or drug combination that will help me get back to my "normal" life. Maybe not. Regardless, I have to learn to accept my limitations for today.

Let's hope my body acts like this during the tilt table test!

Sitting blood pressure: 108/79 with heart rate 64
Standing blood pressure: 68/39 with heart rate 146
It's gonna be a fun day!


So yesterday, I slept for TWELVE HOURS...almost in a row, even! I woke up with oomph for the first time in a while. Go me!

I managed to:
Fold 6 or 7 loads of laundry.
Put away the clean dishes.
Make dinner.
Take a bath to shave.
Take a shower to get clean.

All in ONE day! Go me!

Unfortunately, all day, my heart rate was really high. Sitting and doing nothing it was 120. It got up to 150 while I was (sitting) and folding laundry. THAT is a really uncomfortable feeling. I don't like it. I don't like it at all.

I woke up this morning, and I am shocked that I don't feel like I overdid it yesterday, though. That's a new one! Maybe the Vitmin D my doc put me on is helping some. That would be good!

Saturday, March 8, 2014

Wacky conversations

I have to admit, quite a few interesting conversations have sprung up as a result of brain fog. Let me give you a few examples:

Jen: Where do you want to go for dinner?
Me: I dunno. What sounds good to you?
Jen: Let's go to whatsit...
Me: Ok, where's whatsit?
Jen: You mean you don't know? I'm speaking YOUR language!

(After I handed a toothbrush with toothpaste to my 2 year old niece, KK)
Me: Brush your hair, KK.
KK, giving me a strange look: I don't want to brush my hair! Nooooo!

Sister in law: What are you going to order?
Me: I'm going to get pecan omelettes.
Sister in law: Pecan OMELETTES? WHAT?

Me: So apparently, there's this man-eating elephant. It's killed like 6 or 7 people so far.
Jen: Oh yeah?
Me: Yeah. They've sent out hunting groups to look for it.
Jen: A man-eating elephant, huh?
Me: Elephant? No. Tiger. Didn't I say tiger?
Jen: Nope, you sure didn't.

Of all the things I've lost, I miss my mind the most. Connections.

In an effort to figure out what makes a bad braining day a bad braining day, I started taking my blood pressure and pulse fairly often on those days. And guess what? The days I have the hardest time thinking seem to be the days when my blood pressure fluctuates a LOT in a short period of time. Today (well, yesterday, technically), was a really bad brain day. It started with losing words in the morning, and just got worse from there. My bp would go from 62/38 to 150/100 to 126/110 to 150/34 all within a half hour. It's no wonder I can't think. There's no consistent blood flow to my poor little brain!

Friday, March 7, 2014

Missing Tess Gerritsen

I remember back in the "old days", I'd hurry to Goodwill and buy a dozen books, and then savor them, one by one - generally two or three a week. I'd draw up a nice, hot, extra-bubbly bubble bath, slide into the bath, then climb into the story. The water would start to get cool, and I'd add more hot. Sometimes over and over and over because I just couldn't bring myself to put the book down. It was a fantastic way to de-stress!

These days, I'm limited in what I can read. It generally can't be any longer than a short news article, or I'll forget what was at the top before I'm halfway to the bottom. It's extremely weird to me, as I have ALWAYS been a reader. Even as a first grader, I would wander down to the library (less than a block from my home), and check out as many Nancy Drew or Trixie Belden books as they would allow...and they allowed me to check out twice as many as the rules stated for children.

Walking through Walmart the other day, I saw a book by one of my favorite authors, Tess Gerritsen, and I reached up to pick it up before I realized...wait...I won't be able to read it. It would be a complete waste of money. It was like a nice, swift kick in the gut to realize I may never be able to enjoy the new books by my favorite authors.

I used to be terrified that one day, I'd go blind, like my grandmother has. She, too, was a voracious reader. It never, ever occurred to me that it wouldn't be my eyes, but my own brain that would turn against me.

Wednesday, March 5, 2014

Wonky wonky wonky

All day yesterday, my blood pressure was wonky. I'm talking 140/40, 120/32, 130/50. I felt OFF all day. The funny thing is, my pulse was fairly normal the whole day...usually in the 80s, though irregular. Then today, I'm simply running low. 80/60 or lower, and my pulse is 110 while sitting. *sigh* I wish my body would make up its damn mind!

It's frustrating, because there are things I want to accomplish. The dishwasher needs unloaded. Seems a simple enough task, until I realize I have to stand up to do it, and when my bp is wonky or low, there's a good likelihood I'll end up falling into the counter, or falling on my butt.

I'm just thankful that, thus far, I'm not someone with POTS who fully faints. I just get dizzier, I get tunnel vision, and eventually, lose my vision for a few seconds.

Monday, March 3, 2014

Afraid to hope...and I hate it.

Like I said in a previous post, I used to be a fairly positive person. So it kills me now that being hopeful is so scary.

I recently had some labs done. My regular family doc wanted to make sure that we'd covered all of the bases on things that could be causing my symptoms. She included a test for Vitamin D. It turns out that I'm deficient. In fact, I have less than a quarter of the LOWEST amount one should have in their blood.

Could something this simple be causing my symptoms? Could taking a supplement return my life to me? Or am I deficient because the illness prevents me from going outside much? It's crazy how light-sensitive my eyes have become, and it's impossible for me to go out and do "normal" things in the sun because of my balance problems. Which came first? The chicken or the egg?

She put me on a pretty high dosage of Vitamin D supplement, and we'll retest in 8 weeks.

I know that attitude is important when dealing with chronic illness. I just don't know how willing I am to hope this is going to end my health problems. I've hoped so many other times - usually before tests, or before seeing yet another new specialist - only to be let down. I'm not sure how many more let-downs I can take.

Sunday, March 2, 2014

Migraines and Brain Fog

For the past week or so, I've had daily migraines again. For quite a while, propranalol had kept my migraines in check most of the time. I was down to 1-3 a week, and they weren't as painful. Surprisingly, it has been since I INCREASED the propranalol that I've gone back to having them daily.

Thank the heavens for Imitrex. It's the only thing that will stop a migraine cold for me. Unfortunately, it makes the muscles in my neck and shoulders SUPER tense, and in turn causes numbness and/or weakness in my arms. I've had to take them every day, sometimes twice a day for the last week. I'm pretty sure you could hit my neck with a steel beam, and it would bend the beam and leave my neck unharmed. Ugh.

Along with POTS and with migraines comes brain fog. I sit on my butt on the couch most of the time, so it's not a huge deal. But tonight, I sat down to make a template/transfer for a fairly large tattoo that Jen wants to have done. It is a very detailed picture, and it took quite a while to do. It wasn't until I was completely finished that I realized I'd done it on the wrong side of the carbon paper... the image was backwards. Damn it! (And I SPECIFICALLY did it that way!!! I swore it would come out the right direction. Not my finest moment.) I told her that if she wanted it done, she'd better do the next template. *sigh*

Hopefully, this is approximately what the tattoo will look like, though it will be wrapped around her lower arm.

Linky dinky

Recently, a new (online) friend posted a link to a webpage that can be quite valuable to people who know someone with dysautonomia. It is well worth a look.

If you know someone with dysautonomia

Please take a couple of minutes to read it.

Saturday, March 1, 2014

Piece by piece

I feel as though I am losing myself, piece by piece. First, it was the ability to walk without running into things. Then it was the ability to work or drive. Then it was the ability to concentrate. Then the ability to learn was severely compromised. Then the ability to be happy without an antidepressant. Then the ability to shower without someone else in the house.

I wonder at times, when this is all said and done, how much of me will be left?

I wonder at times, when is my wife going to say enough is enough, and that I am not the person she married? This all started about 9 months in to our marriage. Yeah, in sickness and in health, and all that, but I wonder is it fair of me to keep her to that promise?

Don't get me wrong! She has said and done nothing at all to indicate that she's fed up. Quite the contrary - she is by my side at every appointment she is able to attend. She's taken up the roles of sole breadwinner, taxi driver, and nurse without complaint. She reminds me that I AM still in here, that it's just abilities I've lost, but my personality is intact. And that she is madly in love with me and will never, ever leave.

But how fair is it of me to expect that to continue? I can't be the wife I once was. I feel like I contribute so little. This isn't a 50-50 relationship anymore, and it may very well get even worse in the future.

Friday, February 28, 2014

I've been robbed!!!

...and betrayed by my own body. Here's a quick list of the things I cannot do since becoming ill:

1. Drive
2. Take a hot shower
3. Walk in a straight line
4. Walk without running into people or walls
5. Leave my house alone
6. Learn new things easily
7. Read a book
8. Move quickly
9. Be on my feet for more than a few minutes without getting dizzier and without becoming exhausted
10. Read an analogue clock (sometimes...or without difficulty)
11. Identify groupings of more than three objects
12. Remember words (sometimes)
13. Remember meeting new people or having conversations (sometimes)
14. Do any exercise
15. Do any tasks that involve keeping my hands over my head
16. Use a sharp knife (most of the time)
17. Drain boiling water or oil (most of the time)
18. Take things out of the oven (most of the time)
19. Be responsible for another person (I can't babysit alone 95% of the time)
20. Work
21. Go to crowded public places
22. Do more than 15 minutes or so of housework at a time, and no more than once or twice a day on good days
23. Schedule more than one activity for a day
24. Take a shower without sweating my arse off afterwards...and I'm talking a lukewarm shower
25. Take a shower and get dressed within an hour
26. Sleep more than a few hours at a time
27. Express myself well verbally
28. Win any word games (and believe me, I used to win most of the time!)
29. Focus my attention well
30. Socialize easily
31. Remember appointments and schedules
32. Remember many things I've been told recently (often)
33. Remember things from prior to the onset of the illness (often)
34. Multitask
35. Keep track of my bank balance
36. Do simple math easily
37. Remember if I've read an article already until I'm more than halfway through it (often)
38. Remember if I've taken my meds (often)

In many respects, I have gone through a role-reversal. I was a caregiver prior to coming down with (what I assume is) dysautonomia/ POTS. I have been a CNA, a crisis nursery caregiver, a stay at home mother, and a DSP (caregiver for developmentally disabled adults). I used to be the one to ensure others' needs were met. I was the one who helped budget their money. I was the one who helped them do their shopping. I was the one who helped them with their day to day needs. I was the one who ordered and/or shopped for almost every single item a group home needs to run. Now, I am the one who needs the help. It's a very difficult process to accept this.

Something to remember

I need to remember that I can't do too much in one day. Yesterday, I not only showered, dressed, dried my hair, and put makeup on, I actually left the house. It was only to see the counselor (first meeting - I liked her), but that was enough to wipe me out for the rest of the day. I ended up with a migraine from trying to overdo it, I think. I was supposed to babysit last night (with my mother...I can't do it on my own), but it didn't happen.

It's incredibly frustrating to know that I used to be able to work a 12 hour shift, come home, clean the house, take care of three kids, cook, and shop all in one day. Now a simple shower can put me on my ass for the rest of a day.

Thursday, February 27, 2014

I'm here! A "quick" intro...

So hi there. I'm here! I showed up to my own party! Lemme get this out of the way first: my counselor suggested that I start a journal to record my journey with this weird mystery illness that I seem to have. She says I'm insightful, and that it may not only help me, but may help others as well. So I decided rather than use a regular pen and paper, I may as well take the easy way out and make it a blog instead. Whether or not I am insightful, I do know from experience that writing things out can be awfully cathartic. If you choose to continue reading, be warned...I will most likely complain. A lot. That's one of the things this mystery illness has done to me. I used to be a positive person. I'd like to think that positive person is still in me somewhere, but if she is, she's hiding well.

The only way this is going to make any sense to anyone is if I give a quick history. Let's see how condensed I can make 20 1/2 months of this experience, shall we?

June 14 or 15th, 2012, while I was just sitting there, not doing anything exciting, I felt and heard a POP in the back of my head, and I instantly felt dizzy as hell and nauseous. Boom. To the ground I went. I crawled to the living room and managed to scrape myself up off the floor and onto the couch. I've been dizzy ever since. I suspect it was due to a middle ear infection (though that doesn't explain the popping sound), and that the virus triggered something known as autonomic dysfunction, or dysautonomia. Nobody knows what exactly causes it, but it is known that illness can set it off. Unfortunately, it affects almost all bodily systems, and finding a doctor who is well-versed in it in my area appears to be impossible.

Since that point in time, I've developed more and more symptoms - ranging from the inability to urinate immediately, to numbness and tingling, to not being able to think, to having my vitals go all wonky. I've seen two family doctors, an ENT, three neurologists, including an otoneurologist (one who deals specifically with ears and vertigo issues), two audiologists, and a cardiologist. I have had an MRI of my brain, an MRI of my c-spine, a CT of my sinuses, VNG testing, a hearing test, a sonogram of my thyroid, a couple of EKGs, an echocardiogram, a stress test, and a 48 hour Holter monitor. I have a tilt table test ordered, but it isn't scheduled yet. I've had a whole mess of labs drawn as well. Thank the heavens my wife has a state job that provides great insurance! So far, the only diagnosis anyone is willing to give me is migraine associated vertigo or vestibular migraines. I think they are full of shit. I have an appointment scheduled with yet another neurologist in March. Cross your fingers!

Meanwhile, I am a gravity enforcement agent. In other words, I hold the couch down. . I haven't been able to work since June of 2012 when it all started. I'm rarely able to be up and moving long enough to accomplish simple tasks like doing the dishes or cleaning the house. All sorts of things set the dizziness into overdrive, and it makes pretty much all aspects of life difficult.

I've been robbed of many of my previous hobbies, but I'm starting to pick up others. I started tattooing last year, for instance. Unfortunately, I can't draw for shit, so I'm stuck with finding pictures that I can trace and then tattoo. I'm thinking maybe I'll try to learn how to draw. It's something to do. And if there's one thing I have, it's plenty of free time.