Saturday, June 12, 2010

Okay, I need to rant and update you! I hope that's okay...

Ah, I strained my neck again! It was really hurting me for days. I'm prone to this issue because of the fused discs in my neck and curvature in the shoulder area. It's doing much better, but I haven't been writing entries or comments much because it tends to aggravate this problem.

Second, my asthma has flared up again. Off and on for days now it has been hard to speak without taking a breath without coughing -- hell, it's sometimes hard to take a full breath without coughing. My chest hurts and I'm usually short of breath. It's exhausting. I was only just sick with this weeks ago in Maui. I'm so frustrated. I've been taking my controller and rescue inhalers regularly, but they haven't helped as much as I'd like. It's more discomfort now. I've had asthma for 21 years. I don't think I could ever get used to flare-ups, even though they don't come with full blown attacks, thank goodness.

Third, the fatigue and balance problems have really hit me. I went for a check-up today and found I couldn't really even walk straight or quickly and I kept stumbling. Even in my house, I can't seem to stand without tipping or without my feet rising from the floor. I will definitely arrange an appointment for physiotherapy next week. This is ridiculous. I just hope it helps, given that it's a brain problem not a leg problem.

Also, my feet have been swelling again , I'm having the jabbing abdominal pains regularly and I have a fungal infection in my mouth from my asthma controller inhaler.

Despite all of this, I've been really happy for the most part. I think a lot of it is my puppy Pounce. Plus, I'm excited about my birthday party coming in a couple of weeks. Yay! I'll be 24. It's strange. I feel old physically, but young mentally. I think I look very young too.

That reminds me. That check-up I mentioned earlier in this post was an annual appointment with my cardiologist, who in an earlier entry I had mentioned I was a bit nervous to see. Well, he was a sweetheart, listening nicely as I told him about my virus last year and the post-viral syndrome/Dandy Walker Syndrome. He asked me about school and what I was doing with my time since I deferred that second semester. Aw! I find my doctors are all interested in me as a person, not just my health. I like that. Health encompasses more than your physical being after all!

Well, my results for the 48-hour heart monitor were brilliant of course, but I must confess that I was a bit disappointed because this means I shouldn't have any further treatment, even though I still get episodes. These episodes aren't significant enough to warrant further treatment, which could do more harm than good. My cardiologist is concerned I'm over medicated, so he told me to stop taking my Digoxin. I'm a bit nervous about what the effect of this will be, as, like I said, I still get episodes, and I wasn't doing terribly well before he put me on the Digoxin. Still, I'm on a lot of heart drugs for such a tiny person (5'2, 94 lbs.) who has a really strong heart. I agree with his decision. Who knows. Maybe the Digoxin is contributing to some of my symptoms like the nausea.

It bothers me that I pretty much have to live with these episodes. They are short and don't even seem to come every day, but when they happen, I feel AWFUL: tired, weak and nauseous. Sometimes even a bit light headed. The way I look at it is, with most health problems, treatment doesn't completely get rid of the problem, it just minimizes it to a safe level.

The frustration about my heart caps my frustration with everything else. Also, yesterday marked one year since my wisdom teeth extraction, which preceded the virus that started the post-viral syndrome/Dandy Walker Syndrome I am STILL sick with! A whole year! I keep wondering when it will get better, but I no longer have the delusion that I will be the picture of health when that happens.

After all, my neck problem, asthma, heart Dandy Walker -- these are pre-existing conditions that troubled me before I got sick just as much as they do now. I'd like to think the Dandy Walker symptoms have just worsened because of this illness, but I know my symptoms worsened months before I got sick. Dandy Walker symptoms can worsen (or even appear) in adulthood. So this could be permanent. Ah! I hope it will at least become less of a problem through patches in the rest of my life, just as it improved in late-elementary school and stayed good well into university.

Whatever happens, I'm happy I don't have anything life threatening. Maybe that's what makes me happy. I know it could be worse! The worsening of my Dandy Walker symptoms could have been caused by a shunt malfunction; if my heart was fast all of the time, not only would I feel worse, but I might have needed surgery to correct it, since I had outrun medication options; if I had full blown asthma attacks, I may have needed to go to the emergency room.

I think people who've grown up with illnesses often have this optimism. Like this elderly woman I met today at the doctor's office after my examination and discussion with the cardiologist. We were both waiting to have our echocardiograms (heart ultrasounds). She said she was sorry I had heart problems at such a young age, but I assured her it was a relatively mild problem and was well controlled with medication. I never want anyone to think I'm in danger. I remember before I was diagnosed with this minor heart issue, I thought any kind of heart problem was ridiculously serious. Then when I was diagnosed, I realized that there were probably other people living as actively and fully as I was with strong hearts like mine. The heart is an amazing organ!

The woman told me I was a good person and told me about how sickly she was as a child, getting mumps and diptheria -- a whole bunch of stuff that's mostly prevented with vaccines now. She said she just lives one day at a time and does what she can. She walks everywhere. I hope I'm like her when I'm older! I was sad to see her go. She was such a nice, inspiring woman.

16 comments :

  1. Let's hope reducing the drugs does lessen some of your other symptoms - my fingers are crossed for you!

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  2. Ashley,
    So happy to hear you got relatively good news from your cardiologist. I was hoping you didn't need surgery. I can see putting up with all this crap in your life must be extremely frustrating!

    Nice that you are able to keep your spirits up most of the time, being depressed about it would just make everything so much worse! I hope you can keep yourself busy doing the things you enjoy to keep you mind off the bad stuff.

    Robin

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  3. It really is amazing how you have such a good spirit about all this.
    What are you planning for the big TWO FOUR!?

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  4. I think the lady was right - live one day at a time!!

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  5. Hi Ashley, Thanks for coming to my blog. Come back anytime!!!! I'm so sorry to read about all of your serious health problems at such a young age. I hope that the doctors can get things straightened out for you--especially the medication. medicines are so powerful --and so many of them have lots of side effects. Hope they can find something which works for you.

    Hugs,
    Betsy

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  6. Jinksy - Thanks! That sure would simplify things...

    Robin - You always put so much thought and feeling into your comments here! I'm glad I don't need further treatment for my heart, too. BUT I must confess that I am concerned about how my heart will react to being off one of the two heart meds. I started on this med because I needed it, after all. I agree that depression would exacerbate things and I like your advice about finding pleasures. Thanks so much for everything!

    Joe - Thanks for noticing my happiness. My twin sister and I are having a pub night! Low key, so I won't have work to do.

    Jack - Such typical advice from a dog! I admire you and other dogs for finding great pleasure in the simplest things and living in the moment. Thanks for the advice!

    Betsy - Such lovely things to say... It really helps me feel less guilty about venting when people like you remind me that I am indeed going through a lot -- especially considering my age. I welcome the observations of such a sweet outsider! Thanks very much!

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  7. Yay for you meeting the nice and inspiring woman! I am sure she found you inspiring too :)

    I remember plenty of people telling me to meditate to keep my stress levels low. I hated hearing the "stress" word, but i assure you, it heals tremendously.

    I recommend this book to everyone. It is even on my blogger profile- The Power is Within You, by Louise Hay.

    It healed me through the worst phase of my life a year and a half back. As I type this, I know I should start meditating again. It really helps.

    Hope you get to reading the book, like it and feel amazing.

    Cheers to a beautiful new day!

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  8. Hey, also, you're younger than me! I already turned 24 in May, so I see I am allowed to boss around here!! ;)

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  9. Never ask for permission to rant babe. I thought you were pretty restrained given all that you've been going through. I was sort of hoping there'd be some dramatic image of you standing on a mountain top shaking your fist at the sky(must stop watching old movies LOL)

    Glad about the heart news, dropping a med is always a good thing to, some days you get sick of feeling like the human maraca.

    Now to the important stuff ;) what are the birthday plans? Naked bungee jumping? stock car racing? wrestling alligators? You're only 24 once and next year you'll be a whole quarter of a century and I think that's the cut off for the bungee jumping thing :) (I say that as I have just entered my cougar years).

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  10. I have endless problems with my neck too - I know how cranky that can make you. Thank heavens for Chiropractors.
    For a rant, there was an awful lot of good news in this post :)
    Nice doctor, reduce medication, meeting an inspirational lady... it's no wonder you're feeling quite happy!

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  11. I'm way behind on reading blogs again. I have over two hundred in my Google Reader again, but I wanted to respond to your comment on my blog about Zeppelin.

    I really think once he's not scared anymore that he might be affectionate. It's hard to say right now because he's scared, but he does follow me around. Oh and yes he brays (hee haws) a lot. Any time we're late feeding he starts braying! It's really loud!! I love it. :)

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  12. Feeling - Thanks for the suggestions. Oh, and you have every right to boss me. My sister is three minutes older... She thinks she's my big sister and therefore gets to boss me!

    Rusty - My, that's a funny image (Shaking fist on top of mountain)! I'm glad it came off as restrained. I think I'm far too rational and calm to really rant...

    My sister and I are having a pub night for our birthday! I'm excited... Looks like it will be intimate and low-key. Yay! Thanks for asking.

    Terri - Like I just told Rusty, I am apparently too rational and calm to really rant! Yes, neck problems are a pain (get it?? Hahahaha) Seriously, though, I am very anti-chiropractic, as there isn't a whole lot of evidence it works, plus there are serious not-so-rare risks to it, like strokes and blindness.

    Achieve - Glad to hear about Zeppelin. He sure is cute! I look forward to more of your comments about my posts.

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  13. Ashley,

    Just finished reading your blog - all of it - and I am so sorry you have to deal with such drama and trauma in your life.

    You are an amazing writer with a maturity beyond your years. And you have a lot to say. I can see how journalism wouldn't work out for you, but writing is definitely who you are. I think you're tired of writing about your health issues, but right now, it's what you know the most about. There are lots of people who are encouraged by your fight, even if your issues are not exactly like theirs. Courage trumps disease every time.

    I love Golden Girls too! Rue died on my birthday and that day one channel ran episodes back to back. Sometimes I laugh till my sides hurt.

    Post a pic of Pouce when you get a chance. I have had animals all my life, 62 years! I loved every one of them beyond reason and was heartbroken when they died - and it was worth it! I promise I will love them forever and I do. They will love you back and have the best life imaginable with you.

    The Internet is an incredible place, isn't it? You are going to find your niche and be a force to be reckoned with. As my 11 year old granddaughter says..."you go girl".

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  14. I've mentioned this to you before, but this time I'm actually copying the information. I think I can safely assume that the tachycardia you have would have the same effect on you as the orthostatic tachycardia has on those of us who have POTs.

    I got this info from the POTs website (the site was recommended by Cleveland Clinic)
    "POTS patients use about three times more energy to stand than a healthy person (Grubb, 2002). It is as if these patients are running in place all the time. Activities such as housework, bathing, and even meals can exacerbate symptoms (Grubb, Kanjwal & Kosinski, 2006). Research shows that POTS patients' quality of life is similar to those with congestive heart failure and chronic obstructive pulmonary disease (Benrud-Larson, Dewar, Sandroni, Rummans, Haythornthwaite & Low, 2002)."

    Having a fast heart rate doesn't really sound like a big thing, but if you have the symptoms, you start to realize how hard it is to live with!

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  15. Thought I'd quickly respond about the chiropractors thing before I get to reading your new post... they're not for everyone but I must say from my perspective it is a Godsend. I hurt myself years ago and all I can say is the relief I get from the chiropractic adjustment is immediate and immense. Your situation is completely different to mine though and I never presume to try and convince anyone to see a chiro if they don't want to. It's a personal choice.
    For me? It works.
    (Just thought you might like to hear a chiro patient's point of view; I figure you for someone who likes to get lots of different opinions / information on stuff!)

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  16. Linda - You read all of my blog?! Wow. I'm so flattered. Thanks so much for your sympathy and compliments on my writing. You're right, writing is my outlet and I always write what I know. Yes, animals are amazing. Such great therapy, eh? I'm glad they've always been a part of your life. That's so special.

    Linda P - Thanks for the info. A rapid heartbeat is one of the most draining things I experience. None of this surprises me. It's a shame this experience is so often dismissed because it is mainly a quality of life issue -- and it isn't really usually even deemed a significant quality of life issue! It's demeaning. BUT I'm happy to report that I haven't had any episodes all week, despite going off the Digoxin!

    Terri - I had no idea you were in such extreme pain! Sorry you've had to go through that and I'm glad you found some relief.

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