Sunday, April 18, 2010

Some Weekend!

Boy, do I feel discouraged.

Today is horrible. Not only do I still have the pain in my neck, back, legs, abdomen, constipation, drunk vision and swelling and pressure in feet and ankles, but when I got up today Mr. Ticker was going crazy! It was weird. Not a problem at all in bed when I woke up, but as soon as I stood up (slowly because of the fatigue and pain), he pounded and raced like crazy. Well, it wasn't that fast -- I counted 130 beats per minute. (Is that mildly, moderately or really fast in your eyes, dear reader? Let me know. I have lost perspective.) It was just particularly significant because it was beating so hard and that seldom happens to me when I'm sick with this. I felt so unwell it was tricky to get down the stairs! I was shaky, fatigued and a bit light headed. After I sat down for at least about half an hour, he went back to it's slow self, but ever since he slowed down, Mr. Ticker has been pausing and flip-flopping. My chest feels heavy and I'm so, so tired. Fatigued too. I feel dazed, like I'm in that phase between sleeping and waking. It seems ludicrous that I'm not in bed right now -- let alone that I have homework to do.

This is silly: I've only been up for a couple of hours, but now I am going to lie down again for a couple of hours! The swelling won't go down unless I elevate my legs. Then I really have to get up to do my homework: I have textbook questions to answer for a group project and another assignment I have to do. It's all easy enough and won't take me long to do, but I just can't concentrate when I feel this way. I'm so excited to finish the semester so I can rest whenever I need to without any guilt or repercussions. I mean, I get extensions for stuff -- my instructors are great that way -- but then the workload accumulates. That's bad news because I already have enough work to do at any given time.

At least my event is over... I'm so glad I had a good body day for it!

My mom is playing Hawaii music downstairs and it's sooo nice. We're going to a condo in Maui on April 30 for 10 days! I can't think of better therapy... Then when i get home from Maui my days will remain filled with books, writing, music, the puppy and little else. Oh, the puppy is ours now -- did I tell you guys? His name is Pounce.

13 comments :

  1. Ashley,
    I just got back from Disney with the kids - mostly fun. But there is no place like Hawaii. Maui is great! Take it easy if you go on the road to Hana - that trip makes everyone sick!
    Enjoy the nice weather and beautiful life there.
    Robin

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  2. Hey BTW, you need to put a better photo of that puppy on the blog! It looks cute, what kind is it?

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  3. I second what Robin said – please publish a large picture of your puppy Pounce. Also, just a thought, you are sure that some of your medication does not interact with each other? I had this terrible heart racing happen several times on three different occasions and it was because of medication. You’ll love Hawaii I am sure.

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  4. Thank you for your interest in the puppy! I have put up a large close-up of him.

    My mom wanted to do the road to Hana but figured my sister, who gets car sick, wouldn't want to. I don't either! Thanks for the tip. Three years ago I did a cruise of several Hawaiian islands and loved it! It's so laid back there. I love the palm trees and sunsets, flowers and music.

    Thanks Vagabonde, but I only take two medications and they're both to control my heart rate. It would be a terrible irony if together they made it beat even faster! I'm on the maximum dosage of one medication and the maximum dosage for my weight of the other. They lower the average rate very well and have greatly reduced the severity and frequency of episodes, but it still beats too fast too often.

    I don't really know what to do about it because my cardiologist says I've exhausted my medication options. He said my next option is a kind of heart procedure and possibly an artificial pacemaker, but I don't think my symptoms are bad enough or frequent enough to warrant that kind of treatment. It might be a possibility for the future because over time, whatever strength of medication I'm on seems to become ineffective.

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  5. Just checking back in to clarify... my Vespa Voyages blog has moved to a new location, but is still kickin: the new site is: http://offthemap.eu

    I know the evolution of diagnosis and treatment can often be circuitous and frustrating, but that is when support of friends, family and even of those us here on these blogs can make a big difference.

    Let's stay in touch!

    Ara

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  6. Thanks for reminding me, Ara! I forgot to make the addition to my blogroll. Yes, let's stay in touch. Support is essential and there are great opportunities for it in blogland.

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  7. Just read your post... there were years in the evolution of my healing that it was impossible for me to do homework. I was in grad school when I first got sick and I actually had to drop out. I'm not able to read like I could before and it is very frustrating, so I appreciate that concentration problem.

    I'm sure you've figured this out by now, but I find any time I can break anything I need to do into pieces, so I can just take on a bit when I'm up to it... well, that helps me.

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  8. Oh yeah, breaking into pieces makes it easier, I agree. It makes it less overwhelming, especially since there is no end in sight!

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  9. Congrats on going to Hawaii, I hope you have a great, great time. I love Hawaii, and miss it and when there it feels so 'Hawaii' and exotic that seeing a US post box like one in Niagra Falls (sic) is very disconcerting....this isn't the USA, this is....Hawaii!

    I have a cat called pounce, I love the name (a plushie cat, admittedly).

    I need to read back to get the full history of the heart but what you describe is orthostatic hypotention - autonomic failure of the heart when in an upright position, so it beats faster and (for me I feel nausea and a funky in my deep body and strange feeling in my mouth). This is because the blood pressure is also going crazy to try and compensate. I can't fix the orthostatic hypotention (I take it you are on beta blockers for the erratics, and yeah, they said pacemaker was the next step - your cardio guy sounds good - can I get his number?), BUT, the Mayo says that if you take gatorade or poweraide, the salt/electrolite mix which is filtered by the liver creates a high mix which convinces your liver you are out of control and so the liver excretes and ensyeme (sic) which will stabilize your blood pressure and you will feel less nausea and bad funky, the blood pressure will be about 123/70 - not great but livable. Better than 168/146 and such. Also, the cardiologist here suggest exercise as a way to hide the erratics (sitting down) - it doesn't stop them, it stops you feeling them. Or if your heart rate it low, you can boost it with a bit of caffine particularly toward the end of the day as you grow fatigued. I don't know if this will help at all, I hope so.

    Do you have other autonomic failures like less sweating? Or Raynauds in your hands and feet (the feet feel like someone sent a spike into the ankles, the hands look like jellyfish/eggplant colour?)

    I hope you feel better soon!

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  10. Hi Elizabeth. Thank you for your detailed comments and advice. I doubt I have what you described, as I don't get dizzy sitting up or standing up and my blood pressure is perfect. I never feel faint.

    I take the max level of a calcium channel blocker and the max for my weight of Digoxin. I can't take a Beta Blocker because I have asthma, so according to my cardio, I've exhausted my medication options. Unfortunately, after a while, whatever strength of med I've been on doesn't help much anymore, so if this happens again, I don't know what I will do. It's fine for now. I can handle the occasional episode.

    These meds have me controlled really well for the most part, but on lower dosages, my heart has been fast the majority of the time. My cardio says my natural pacemaker is just set to beat too fast. There's no structural problem or irregular rhythm.

    Sorry! I won't be giving out names of doctors I put on here. I hope you find one who works for you. I don't have anything like sweating or Reynauds. Since I got a nasty virus last summer, my feet have been swelling off and on. No one knows why. It was fine for probably months and it's been happening a lot again lately. Does this happen to you? If so, how do you relieve the discomfort?

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  11. Also, I must stress that my heart is perfectly strong and I'm in no danger and likely never will be. While I definitely have to treat this because it's just not healthy to have a fast heart like that, it's more of a quality of life issue than anything.

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  12. I just read through all these posts - I don't know I haven't been reading your blog more often. I love it. P.S. The dog is super cute!

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  13. Thanks so much, Danine! I love your blog too! I am so in love with my dog....

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