All I Can Do is Cry

Lately I have been at a loss for words. This past week has been better health wise but more emotionally draining than I could have ever imagined. Last SuperBowl Sunday started out with some bad news: my great aunt passed away at the age of 89. She lived a long and happy life and up until the last years her wits were all in tact. Her name was Betty but as kids we fondly referred to her as Betty Boop and she proudly embraced the nickname. Although her passing did not come as a huge shock, it still filled me with a stinging sadness. My mom and I managed to go out shopping for a little bit in her honor. Betty was a shopaholic and a half. I knew she wouldn't want everyone to be moping around upon the news of her death so I figured it would be best to get out of the house for a bit and try to remember the good times.

When we returned home a few hours later, I checked my email and my Facebook account and clicked on a link to a breaking news story that left me screaming in horror. A local murder suspect whose wife has been a missing person for months blew up himself and his two young sons that Sunday afternoon. I remember feeling the same way I felt on 9/11: for a split second thinking it was an accident but then all too soon realizing that it wasn't. This disturbed man had deliberately murdered his own sweet and innocent children. This story hit particularly close to home because I am friends with a family friend of theirs and have been rooting for those two little boys ever since their mother's disappearance two years ago. It was a shocking, heartbreaking day. Our whole community is still grieving the loss of these two little boys and will be for quite some time to come.

Maybe it was all the emotional stress, the fact that I can never seem to shut my brain off after traumatic events, or the fact that I don't seem to sleep much during stressful times, but my emotions seemed to manifest themselves physically this week. I passed out in the shower for the first time. I don't normally pass out. I can usually tell when I'm getting close and sit or lay my butt down before it happens. I felt very lightheaded and disoriented in the shower and attempted to get out but then found myself waking up on the shower floor with the warm water running over me. I also managed to break my plastic shower chair in two on the way down so I imagine I didn't fall too gracefully. I have been a bit sore ever since and I assume it also had something to do with the heat of the shower.

I did not go to the doctor immediately afterwards but I did schedule an appointment with my electrophysiologist (the soonest I could get in is March 1st) to report my passing out to him and to obtain the results of a yearly echocardiogram that I am going in for later this week. My last echo was done in 2008 and the geneticist who diagnosed my EDS recommended that all EDS patients go in for an echocardiogram at least every other year as a preventative measure to detect any structural cardiac abnormalities.

Tomorrow I have an interview with an SSI representative to determine whether or not I am eligible for any benefits. My lawyer informed me that my hearing for disability is another 9 months to a year away so that I should take the SSI interview for now and cross my fingers that it goes through. I have a very small retirement account from my old employer that may render me ineligible for benefits at the moment. And quite frankly, I resent having to "spend up" my hard-earned retirement earnings at a 50% loss simply to obtain the benefits I have previously earned by working. Either way I hope to have more information tomorrow and I'm really hoping that there is some positive news around the corner.

On a brighter note, I'm finally ready to resume Dr. Levine's exercise protocol for POTS and have a hunch that my results will be promising since my symptoms have responded positively to exercise in the past. My laparoscopic appendectomy scars are barely noticeable anymore, in fact they're almost gone! My skin healed very nicely after the surgery and I am pleased that I didn't experience any major complications in the healing process. The surgeon has cleared me to start exercising again at any time! I am glad that nasty old appendix is outta me and extremely thankful that I made it through both the surgery and the recovery successfully!

Let's see...what else have I been up to lately? Still working part time from home although it's a challenge some days I feel like I am finally making some positive progress at work. In my spare time I have been catching up on a lot of shows: Pit Boss, Dance Moms, Teen Mom 2, Revenge, America's Supernanny, Hoarders, Intervention, even a new one called Mud Cats. It's like TLC's Hillbilly HandFishin' but better! There are still a handful of other shows, new and old, that I also intend to catch up on in the near future. I figure vegging out in front of the television will be a nice way to recover from the rigorous exercise my body is about to endure.

I am also hoping that the exercise regime will serve to distract me from my own emotions right now. I have a really hard time trying to wrap my head around the concept of death and the finality of it all. I really need to pour myself into something so that I don't have so much time to think about all the injustices and cruelties in the world. If anything positive came out of this week it is the fact that I appreciate my own family more. My two little cousins are the same age as the two boys that were murdered. Their family will no longer get to play with them or delight in their youthful energy. Although my cousins are rambunctious and have extreme behavioral problems at times, this weekend I found myself able to overlook that and just be thankful for their presence.

Here I sit somberly on the eve of Valentine's Day and I can't help but think that Heaven gained some good ones this week. My great aunt Betty, the young Powell boys and the inimitable Whitney Houston. These losses leave me deeply saddened and I have spent a disproportionate amount of this past week with tears in my eyes. The following song says it all.

Dr. Levine's Exercise Protocol for POTS: The Beginning

Considering it's a new year, what better time to embark on my 3-month exercise journey? Truth be told, I would have loved to have started this protocol about 6 months ago but it was difficult to get a hold of Levine's associates in Texas about the study and by the time I finally got the info from them I was sick again. Now that my awful sinus/ear infection and stomach issues are better, I have started Levine's protocol. So far, so good although I will say 50 consecutive minutes on a recumbent bike with a high heart rate is anything but easy.

Last night I rode just over 18 miles at an average speed of 21 miles per hour, averaged a heart rate of 136 with a peak heart rate of 149, and burnt a total of (only!) 323 calories according to my bike. It seems to me after 18 miles I probably burnt way more calories than that! I have the bike set up in the living room although I find it tough to focus on television while I'm riding. In fact, during intense exercise like that I find it's actually much easier to just shut my eyes as they tend to get really dry when I exercise. Anyone else experience that/know what causes it?

So I strapped on my heart rate monitor and ipod, closed my eyes and went to work. In 50 minutes I managed to listen to a new favorite of mine, Anna Nalick's 'Broken Doll & Odds & Ends.' I am going to use music to motivate me and listen to a different artist each exercise session as 50 minutes is usually long enough to listen to a complete album in its entirety.

Today I am supposed to be doing weight training according to the schedule that Levine's folks created for me. I suppose I should do that soon although I am still tired from yesterday and my knees are a bit sore. I cannot reveal any specifics of the program, but I believe each workout plan is tailored to your individual heart rate so my regime may look different from the next person's anyway.

If you have any interest in trying the program, I would recommend contact Dr. Levine's associates as soon as possible as it may take months before you are accepted into the study to begin. If you test positive for POTS according to a simple 10-minute stand test (much easier than a tilt-table test!) performed and recorded by your doctor in the office, you will most likely be accepted into the study and receive your own customized workout regime and schedule based on your resting and standing heart rates.

I still have a few questions I need to run by Levine's people. For instance, does it matter if I wear compression stockings while exercising? What if I can't get my heart rate up high enough into the zones that I'm supposed to be working in? So far it has been a real challenge for me to even get my heart rate up into the 140's while exercising (I can achieve that hr standing still, no problem, but riding the bike is much harder).

I am going to go do my exercises now before it gets any closer to bedtime. Please let me know if you have any suggestions for music! I will listen to just about anything and enjoy listening to stuff I've never heard before. Going to try to make this exercise journey as painless, fun and interesting as possible. The possibility of feeling better is motivation enough I just think music will help the time go much faster.

For your listening enjoyment, here is one of my favorite Anna Nalick songs, 'Shine.' One of my favorite lyrics is, 'Isn't it time you got over how fragile you are?' It definitely resonated with me for obvious reasons. I'm fragile, but it's up to me to make myself stronger.



I am also interested to hear if anyone has tried Levine's protocol or a different exercise regime and hear about your results, how you felt, what to expect, etc. Wish me luck! I intend to post regular updates about my exercise experiences and progress.

Updates and Downtime

I feel like it has been quite awhile since I have actually written an update on my life. I haven't had a whole lot of downtime lately, but finally had some tonight so thought I'd better take this opportunity to share. Many big changes have happened in the past month. First off, I am currently in the process of applying for disability. It is a lengthy, confusing process fraught with many forms, but luckily I have a good lawyer and a great paralegal in my court to help answer all my questions. Thankfully they are understanding and work with me over the phone so I don't have to worry about making it to any appointments in person, which is a huge relief.

During my last visit to the EP, he brought up the whole disability thing, saying that it would be a good idea to apply soon, kindly reminding me that it didn't mean I would have to be on it forever. Apparently it's much much easier to go off of disability than to get on it of course. So I gave in. Signed up with a lawyer. Paperwork is in. Now the waiting begins. Apparently it can take anywhere from 9 months to 2 years total to get a hearing before a judge. Had I have known that I would be sick for four years, I would have applied the day I got sick. But my optimism prevailed as I struggled to work, got laid off and sought stable work-from-home employment (the chupacabra of the job market it seems).

That said, I am proud to report that my job-seeking diligence has finally paid off and I am gainfully employed by a nonprofit organization working from home part-time. So far so good. I am their sole employee, the hours are flexible and my boss has been wonderful, providing me with plenty of guidance and input, which is rare to find nowadays, especially in a telecommute position. The only real downside? The pay is not great and not enough to support myself on. It is grant-funded and will last for a year. The good part is, it's okay with my lawyer that I'm working because I'm working such a limited number of hours exclusively from home and I'm not making over the allowed amount to still be considered disabled. Even if I am granted disability, I hope to still work part-time doing something meaningful whenever I am able. It renews a sense of purpose and accomplishment within me that has been missing for a long time. And working 15 hours per week makes the time fly by as I typically work a little bit each day.

Health-wise things have been a little better lately, knock on wood. After my extreme high blood pressure episode this summer, I'm not sure if I should be happy or unhappy to report that my blood pressure now hovers around the 90's over 60's most days. If I am up and about it sometimes gets to the low 100's. At night in bed it is 80's over 50's sometimes. Believe it or not I have never paid much attention to my blood pressure before and neither has my EP. Until the high blood pressure scare this summer, the only thing I ever noticed or paid any attention to was my high heart rate. I can't even remember what my blood pressure was like before the extreme highs this summer and the mild lows now. Mornings are still very rough for me and I am very sluggish so I try to do most of my work in the afternoons or evenings whenever I have the energy.

I am consuming copious amounts of salt again and plenty of fluids of course. Sometimes I eat so many chips even I get tired of them. However for those of you who need some tasty new chips to try, I am currently loving Trader Joe's Hawaiian Style Hickory Barbecue Potato Chips. Crunchy chips, although satisfying and great for my salt intake, not so great for my TMJ, which has been a royal pain again lately. I am supposed to take flexeril (a muscle relaxant) for it every night before bed, but haven't taken any in at least a month because it lowers blood pressure and I don't need that unwanted side effect at the moment. I would really like to try botox for my TMJ so they can inject the specific problematic muscles that keep spasming and I won't have to rely on Tylenol and muscle relaxers for relief. Botox injections are supposed to provide relief from headaches for 2-3 months after the injection. I can't even imagine what I would do with myself if I had 2-3 months without TMJ headaches! It would be amazing! Sure I'd still have the whole POTS thing to deal with, but I feel like I would be able to devote more time/energy to exercise if I didn't get awakened every morning with intense pain.

This TMJ thing is really cutting into my sleep. And without sleep I am essentially useless. My POTS symptoms (namely wooziness/lightheadedness) are WAY worse on 4 hours of sleep a night than they are on the rare occasion I get a full 7 or 8. After the nights I have actually slept enough, my POTS symptoms are much, much more manageable. I know I definitely haven't been getting enough sleep lately because I can barely keep my eyes open watching my favorite shows with friends. I always used to be the energetic one, never the one who couldn't stay awake during a movie or a half-hour sitcom for that matter. Luckily they are understanding but I still feel rude when a friend goes out of their way to come visit me and I am nodding off mid-sentence. Is this "normal" for dysautonomia? I am wondering if it's somehow related to my lower blood pressure readings. I also can't help but wonder if this is how narcoleptics feel when falling asleep at inappropriate times. I try to yawn, eat, or keep myself moving so I won't fall asleep on my company, but it's all to no avail. I worry that friends will stop coming to visit me altogether if I fall asleep on them every time because they will assume I'm not up for company anymore.

However, I am hoping to be functioning more normally in the near future again because I will finally be embarking on an exercise research study. At last the folks in Texas faxed the paperwork to my doctor's office to enroll in Dr. Levine's Exercise Research Protocol for POTS. I am super-excited. It has been about 3 months since I first contacted them and have been anxiously awaiting their info. My next appointment with my EP is on October 13 and I hope to get started shortly thereafter once they check and record my current numbers. I ordered what looks like a simple heart rate monitor on Amazon (have yet to try it) that arrived yesterday and am ready to rock and roll on my recumbent bike. All I have left to do is create some upbeat playlists that will hopefully keep me motivated during workouts. Let me know if you have any song suggestions, I'd love to hear them!

Perfect Exercise Equipment for POTS

Although the Luxury Hypoxi L250 is touted as a cellulite-burning machine, something tells me it would also be the perfect piece of exercise equipment for a potsy to own. Especially if you're not able to tolerate exercise in an upright position it would serve to help stimulate circulation immensely. Of course, one could simply employ the old-fashioned method of lying on your back and riding an invisible bicycle in the air and probably achieve similar circulation-boosting benefits, but this piece of exercise equipment looks much cooler and actually, downright comfy. Even if I can't afford one, I wish my gym would at least get one of these.

http://www.thehypoxistudio.com/L250.htm

The Effects of Deconditioning on Dysautonomia

Any POTS or Dysautonomia patient knows all too well that sometimes we have those days where we can't get out of bed no matter how hard we try or how well hydrated we are. Whether we're experiencing dangerous lightheadedness, syncope, fatigue, or pain, sometimes the bed is our only option. Even when things are going well with our health for an extended period, we may still experience a really bad day here and there. That's the unpredictable nature of POTS for you.

Personally, my symptoms have responded very well to weight-bearing exercise and recumbent cycling. When POTS first struck my senior year of college, I was in the best shape of my adult life. I was taking a strenuous ballet class twice a week, yoga three times a week, and walked all over the place all the time. So to all those misinformed people out there who think that POTS is simply a result of being out of shape, I say they're absolutely wrong. I know many POTS patients were great athletes before they fell ill. At my absolute sickest when I couldn't do much of anything, a well-meaning but stubborn and ignorant relative told me I was just out of shape, and that my "heart condition" would go away if I simply got in shape and exercised everyday. Of course his proposal sounded preposterous to me. I could hardly lift my head off the pillow most days let alone become a fitness guru. And his oversimplified explanation didn't account for why I got sick in the first place when I was in such great shape as an active college student.

Nonetheless, my electrophysiologist also urged me to join a gym even if it meant exercising for just five minutes at a time. Eventually (about a year after my diagnosis) I took his advice and began a careful exercise regime. Although I was doing fewer reps and lifting lighter weights than the senior citizens at the gym, I was feeling better after these brief workouts. I also purchased a recumbent exercise bike for home use and between riding that 3 or 4 times a week in conjunction with the weights at the gym 2 or 3 times a week. Between these two activities I was feeling a lot better and able to accomplish a lot more in a day than I had previously been able to. I also experienced far fewer woozy spells. In fact they were almost gone. However, if I went off track and missed a few days of exercise, the woozy spells returned and I felt potsy again. This tells me that consistent (but not strenuous) exercise is the key to a more normal life, at least for me.

After a few months of getting into a good exercise groove, I started a full-time job that sucked up all my time and energy. My whole day revolved around my job and there was no time left for exercise. Although I enjoyed and needed this job, it had clearly impacted my health in a negative way. Sitting upright at my computer desk all day with my hand glued to the mouse was not doing anything to improve my strength or circulation, in fact, the excessive and prolonged inactivity was diminishing it. The woozy spells were back with a vengeance upon standing, my feet were always icy cold, and I was experiencing sudden and intense bouts of weakness where I couldn't do anything but lay there. It may be a blessing in disguise that I lost my job when the company downsized by 50%. Even though I was telecommuting (about as ideal as it gets for someone with a chronic illness), my body could not handle 40-50 hours a week. I didn't even have that many good hours to spare in a week. Although the layoff came as a total unwelcome surprise to me initially, I am now realizing that I was putting my body through hell just to be working. Of course I do not have the luxury of simply not working to focus on my health (I wish I did) as I need the income, but ideally it will be something that pays better than my last job and it will only be part time (I hope).

Since losing my job I have been in a bit of a funk, mainly because my job was basically my whole life since November up until last week, so I am feeling a bit empty inside. I have been lounging around more than I should be, staying in bed longer to try to get sleep that doesn't come, and feel too tired and sluggish to exercise. Yet I know I need to exercise again because it will give me strength and energy and should markedly improve my symptoms as it did the last time. Since I have been spending more time laying down lately, my symptoms have gotten worse. I believe that in order to feel better, I have to keep moving, constantly stimulating my circulation particularly in the legs and I will not be able to go extended periods (in my case about 4 months) without exercising ever again.

For a more comprehensive look at what prolonged bedrest can do to the body even in healthy individuals, please check out this link. Whether you agree or disagree with the bedrest philosophy, it is interesting to consider how your own body responds to bedrest, and conversely, how it responds to exercise.

Exercise: Friend or Foe?

If you asked me whether or not I would be exercising after I first got sick, the answer would have definitely been no. I could barely walk from room to room without getting weak and winded. Chronic tachycardia will have that effect on a person. I couldn't take the stairs on my college campus, instead I had to rely on elevators and even then it was a stretch just to get myself from class to class. This was all before my POTS diagnosis of course.

My EP kept urging me to join a gym and just start slowly on bikes and weights. For a long time, I ignored his advice. I then stumbled upon a blog about a research study in Texas on exercise and the POTS patient. I was intrigued. I immediately contacted the blogger and the research associates but never heard back, so I am unclear what Dr. Levine's specific exercise protocol is, but the blog mentions recumbent bicycling, swimming, rowing machines and weights. So, I did some research, and started exercising at a nearby rehab facility. Since Dr. Levine's specific protocol was not revealed online, the owner designed an exercise regime specific to my needs. He performed an EKG, blood pressure readings, and a test called the BioZ that measures cardiac output, stroke volume, and things of that nature. He said the always reassuring, "I've never seen anything quite like this before," in reference to my off-the-charts BioZ test results. He then performed the BioZ test again five minutes after exercise and my results were encouraging: everything had come back into a normal range. He concluded that I need to exercise in order to keep my circulation going. And I believe he is right. However, in the beginning, I couldn't tolerate any exercise. But now that I have gotten my condition somewhat under control through salt, fluids, and the occasional beta blocker, I am able to do certain exercises and movement really does make me feel better.

If I don't exercise for a couple days, I start to notice the effects on my body. When I am diligent about my exercise routine, I am much less lightheaded and suffer fewer woozy spells. I purchased a recumbent bike to use at home and ride anywhere between 5 and 10 miles every other day at a low to moderate resistance setting. If I ride it a bit each day, I tend to feel better. However I think it's important to take a day off the bike here and there to let my muscles recover. I try to do light weights with high reps 2 to 4 times a week for about twenty minutes at a time as well. I do some leg work, abs, back, and shoulders. I have definitely noticed an improvement in my muscle tone and I am a bit stronger overall. An occasional pilates workout provides a nice diversion from my standard routine and if I am experiencing worse than normal brainfog I turn to yoga, as it enhances bloodflow to the brain because of all the inversions. Lately I have not been devoting as much time to exercise as I should be, and I can feel it. My woozy spells are indeed motivation to get back to the gym.

As with any exercise regime, please consult your doctor before beginning. Exercise can be a positive experience that improves circulation, muscle tone, and creates natural mood-boosting endorphins. Take it slow, if exercise causes you any abnormal or unbearable pain or discomfort, stop and revise your regime. Don't feel pressure to exercise for hours per day. Sometimes just minutes will do the trick; some exercise is always better than none at all. My best advice is to start all exercise in the recumbent position, doing leg lifts on the ground or from bed if that is all you can tolerate. Don't push yourself too hard. Monitor your heart rate and blood pressure throughout, at least in the beginning. Your stamina should increase over time. Be patient with your body, and most importantly, listen to it. Do not exercise to the point of exhaustion. Start with brief bursts of exercise and wait and see how your body responds the next day. Over time you may experience a noticeable improvement in your symptoms as I have. Exercise has quickly become one of my best friends.