At this rate...

Sometimes I take my pulse before and after I take one of my heart medications if it's slow enough that I can't feel it beating. This is to make sure the medication doesn't make it too slow. A nurse I know taught me this. My cardiologist sure didn't. He didn't even tell me about precautions I have to take to maintain the level of Digoxin in my blood which can drop to an ineffective level or rise to a toxic one with certain foods, illness, etc.

Well, for a couple of days, the ticker was nice and slow! Without episodes, I feel very energetic and able to eat and get to sleep comfortably. I really enjoyed it, but I was concerned that the medication might start to work too well. My heart rate changes: sometimes I have fast periods, or periods when my heart goes crazy easily and sometimes I have slower periods like this one. A "good" period typically has my heart in the late 80s, but during this period I even found it below 70 beats per minute!

Unfortunately, I'm going into a bit of a fast period. This one has me slightly abnormal sitting down and more so when I'm standing or walking. I am really disappointed, especially because my fatigue on stairs will likely worsen and sugar/carbs will really get me going. Also, my heart will probably get faster before it gets slower.

I'm not the least bit uncomfortable right now. It's fine, but still I'm conscious of my health issues! Even though I feel fine! And I was also conscious when I felt great because I was monitoring the situation. I wasn't sure if I should write this entry because I thought it might make me seem paranoid. Well, I think anyone who has health issues, whatever they may be, is likely to notice patterns. This is a good thing: it helps you prepare for bad periods and figure out what you need to do to feel better. I am so attuned to my body, but right now I don't want to be.

See, because I notice patterns, I tend to beat myself up when a symptoms seems to be triggered. I assume that it's my fault. If my neck is really sore and stiff, I assume that I just slept awkwardly, have had bad posture or not stretching enough, even though I have spinal problems. Or if my heart gets crazy, I get angry with myself for having popcorn. I make the symptoms my fault.

I used to think I just blame myself because I want to feel better. Really, I want to think that my symptoms are completely within my control.

Note: It's later in the day and ticker is awesome again, despite eating the rest of mom's Swedish Berries.

Crazy heart

Yesterday I threw my my mom a surprise 60th birthday party. I had to tell my Mom a lot of lies about why I was talking to my neighbor who was hosting the event at her house and why I was leaving my house with my dad (to get decorations). It was tough because I don't like to lie! Planning the party was also tough because I was co-ordinating several different invitation methods. I looked up some old friends of my mom on Facebook and sent them each private messages about the party. I also sent a group message to a bunch of my friends who my mom loves and has known for years. I hand delivered invitations to the neighbors we like. Oh, and I phoned my Aunt to invite her, my uncle, cousins and their partners. I had to keep following up with all of these people to keep track of who was coming and make sure they knew where the party was and answer their questions about gift ideas. It was stressful! It was especially hard work to keep all of this from my mom.

It worked! She was completely surprised! Of course, she bawled when she saw us all. After the surprise, I immediately relaxed. Then I poured myself a glass of red wine! It had been a tough week and I was happy to get a buzz. My heart wasn't so happy, though. It went pretty fast. I counted 140 beats per minute at rest. So I didn't drink anymore after that. I also didn't have any of the pizza we ordered because my heart had gone insane the previous time I had had fast food. It could have been a coincidence. Anyway, that night I tried to sleep with my heart going at 170 beats per minute.

One of my mom's friends, whom Mom hadn't seen in 40 years, has had heart problems too. After mom told her about mom about my heart, her friend warned me that alcohol is bad for it. She said two glasses give her palpitations. I figured racing on only one glass was fine until I read on the internet that one glass of red wine a day is supposedly good for the heart. Over a year ago, my cardiologist told me to "live" and have a few alcoholic drinks at New Years if I wanted. Whatever. I don't know what to think. This woman LOVED me and she said she wanted to adopt me because I'm sweet and nice. She also said she felt instantly connected to me and said "You have a heart of gold, but you have to take care of it." I think that's really nice. A virtual stranger concerned about my health. I appreciated her honesty, especially about the connection she felt with me. I didn't tell her my heart was racing. I'm very modest about it.

I was trying to ignore my heart. I was having such a good time at the party. There were so many people there I don't see much! I just couldn't ignore it, though. I was really uncomfortable and I felt weak. I was on my feet for most of the night and they got really sore and fatigued. I'm sure being on my feet/doing work for the party also contributed to the heart racing. I must confess that I wanted to leave the party hours before it ended because I felt I needed to rest. I DIDN'T want to leave, though, because I was having a lot of fun with everyone. I find my body and mind are usually in conflict like this. It's so frustrating to have to hold back or at least feel like I need to or should. It's no way to live, but what can I do?

I don't want to imply that I'm unhappy now. I'm happy that everyone had such a good time at the party. I'd told the guests that the party would be until 5:30 p.m., but it ended up going until 10:00p.m.! Surely this was due to my good hosting and entertaining. Seriously, my family and neighbors and friends were meeting each other for the first time, but getting along like they'd been friends for years. It was beautiful. My mom connected us all!

I'm relieved that I don't have to hide from my mom anymore! Ah, but I'm ticked that I have to do homework today....

I don't feel well

Not a good day today.

My legs were especially weak and sore. Usually I listen to music while I eat and walk around my kitchen until I need to sit down. I pace because it's too hard on my legs to stand still. I've always been that way; this symptom of Dandy Walker is just enhanced these days. And walking, especially up the stairs of course, was also harder today.

It didn't help that my heart was racing. It did that off and on all day. Some days I'm oversensitive to food, activity, heat or sometimes it just gets fast for seemingly no reason at all. Sometimes I think the exertion and discomfort of standing or walking contributes to the racing. Lately my heart's been really pounding sometimes when I get up a flight of stairs, the same way it used to do years ago before I was medicated.

Anyway, I walked to my allergy shot. I felt so strong because I was able to walk briskly despite the asthma brought out by the cold air and the heart racing. As I walked home after my shot, I felt my arm go sore and numb, so I rolled my eyes and went back to see the doctor. He examined me and then had me sit in the waiting room to make sure I wouldn't go into anaphalaxis. I was so disappointed because this reaction means I can't go on a higher dosage of allergy serum next week. I can only tolerate the highest dilution of serum, so I want to get to the maximum dosage to ensure I get the most I can out of the serum.

Every week I have a debate with myself about whether I should tell the doctor I'm not feeling well or haven't been. Today I had my shot with my former family doctor who had left the clinic a few years ago and come to take over for my doctor for the next couple of days. I was content to catch up with him and talk about his Christmas plans! Also, I've been sick for so long and I didn't feel like refreshing him on everything. He's not familiar with my situation. If my doctors can't figure it out after many appointments, how could he do anything? I need to see a neurologist for Dandy Walker related things anyway. My condition is so rare that few other types of doctors know much about it! I just get so jaded and I don't see the point in going to doctors. Really, today, the only reason I was considering telling the doctor about some of my symptoms that have gotten worse again, like the bubble sensations in my head and the leg weakness, aching and swelling, heart racing, balance issues and constipation, was because I thought it would feel good to vent to him. He's so sympathetic and such a good listener.

If I'd been really ill, I would have told him, but I don't think of myself being ill today because I have been very active. I feel guilty for seeing doctors about problems I'm not experiencing in an incapacitating way. That's partly why I get disappointed when I feel unusually well at doctors' appointments. It's also because I know they're likely to take me more seriously if I'm clearly not well. If I'm having an okay day or the symptoms generally haven't been alarming and severe, I tend to downplay them because I don't think they warrant my doctors' serious concern. I also don't want them to think I'm being dramatic. I prefer to buck up and wait it out.

I haven't felt sad today, despite feeling ill and missing my sister's wine and cheese party at her work. I am VERY excited to see my sister and her puppy, to give and open Christmas presents and see my relatives! Simple pleasures like this keep me going!

This might be a dead end

My bloodwork is normal! I prepared myself for this because a huge part of me felt that the bulk of my symptoms were related to the Dandy Walker. Also, I didn't want to be disappointed with the results. I think I was a bit desperate for a blood test to give me a definitive answer. I am relieved that nothing serious appears to be going on. My family doctor suggested I see my neurologist, which I had already planned to do after my MRI on December 27. Maybe the neurologist can bring me closure.

Here I am preparing myself for good news again. I don't think the neurologist will find anything wrong with me. I can see him agreeing with me that my leg weakness, aching after activity and loss of balance, all of which I used to experience as a young child, is again related to the Dandy Walker. It still seems strange to me that all of the symptoms became more severe with the virus, though. Is that a coincidence or can illness provoke symptoms of Dandy Walker? Or maybe it's not Dandy Walker at all.

A conclusion of Dandy Walker doesn't explain the abdominal pain or feet and ankle swelling, though, so I'm thinking that might be a separate issue. My family doctor didn't have much to say about all this, so I think I'll see my internist again for her opinion. I think I'll see my cardiologist again too because my Digoxin is a little low and my heart races when I'm standing or walking. Could that just be because I have to exert myself to stand and walk? I don't think so. It races even when I'm just sitting down too. Could it be that my heart is contributing to the leg fatigue? The heart racing hasn't been for the past six months, so I'm assuming that it's not related to my illness.

If my main issues are indeed related to the Dandy Walker, then that means since my virus ended I've been suffering from a disability, not an illness! I keep thinking about all of those times I've been telling people I'm sick! I'd be happy to seek physical and occupational therapy to manage my symptoms -- anything to help me feel stronger and more comfortable. There must be exercises and mobility devices for me! I'm getting excited to learn how to live with this rather than complain and then put my feet up. With therapy I will feel actively involved in my recovery or the management of my disability.

Sometimes I feel that a cane would help me, but I'm afraid that people might think I'm looking for attention or exaggerating my situation. That's not it at all! A cane would relieve pressure from my feet which are already sore because they're flat and I sometimes strain the muscles in them to keep my balance. It would also prevent me from winding my back when I walk, help me keep balance and stay on my feet comfortably for longer periods. I think I would only need the cane for walking long distances or standing for long periods.

And I can see exercises helping me too. I often practice "tightrope walking" and standing on one foot for as long as I can. I remember when I was about seven I went to some sort of physical therapy and had exercises to do at home like playing wheelbarrow with someone holding my legs up. I was also instructed to practice walking like a penguin, but I'm not sure how that was supposed to help. Maybe some sort of strength training would help my legs, but I'd like to do that with a trainer who can help me figure out what weight would be good for me, length of training, etc. I feel really optimistic that I can help myself. I considered seeking help in these areas earlier, but I figured these would just get better on their own or that it would be better to go to therapy when I felt better.

I'm a bit upset to think that maybe this manifestation of Dandy Walker is permanent. Regardless, I'll always have to deal with it, my arrhythmia and my asthma. Lately I've found myself asking "What if?" a lot, mainly "What if I can only work part-time someday?" or "What if something else is going on that my doctors aren't looking for or haven't been able to detect?" Everything is unknown, but at least the bloodwork ruled some things out.