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. :)

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.

The Spoon Theory

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.

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.

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!

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?

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

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 140...my 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.

Superwoman!

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!

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!

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.

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.

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.

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.