My First Time Driving a Motorized Shopping Cart

I am a bit of a stubborn person by nature. It took me a long time to admit that yes, at times I definitely need that handicapped parking sticker. And now that I have been using it, it has made life a little easier. The other night I was feeling very lightheaded and weak but decided to go on with my usual routine. Well, the only place that got me was sitting on the floor in the middle of a Lowes home improvement store.

Several of my friends have suggested that I use a motorized shopping cart on a bad day or when I'm in a large store. So, I finally gave in and tried one. And go figure, the first time out, I got a dud. It was not a smooth ride. Although I'm sure it only traveled all of about 5 miles per hour at most, it was very touchy and took me awhile to get the hang of driving it. Don't let my experience discourage you though, I'm sure they couldn't all be this difficult to navigate. The cart was stop, go, stop, go, stop, go and didn't turn very well. But aside from the technical issues, I had a much more pleasant shopping experience than usual. I was able to last much longer and didn't have a woozy spell once.

After the parking sticker incident, I was apprehensive about the way people would perceive me or the looks I would get for operating a motorized cart. But surprisingly, the shoppers and staff of Fred Meyer I met in the aisles were surprisingly friendly. I got a few looks, but not dirty ones. Nobody asked me why I was using a motorized cart, and nobody seemed to care. All in all it was a much better experience than I anticipated. There were only a few major drawbacks to using a motorized cart. The first was, I could not fit many items in the basket. So if I had a lot of heavy shopping to do, I would probably need someone else to come along and push a regular cart if I could not do it myself. The second thing is, if I were not physically able to stand that day, there are many items that I wouldn't have been able to reach from the cart. The last thing is, some of the aisles were a bit too narrow for the cart to clear so I found myself taking alternate routes a lot, which was a bit annoying.

If you have been contemplating trying a motorized shopping cart, I would highly recommend it. If you are still uncomfortable with the idea, try it in a store you don't ordinarily shop in. There is nothing to be ashamed of, but I understand that it can be exhausting to explain your predicament to people you see on a regular basis. Automatically people tend to assume that you've been injured because they just saw you walk in the store last week. If only dysautonomia were as simple as an injury that would heal, life would be much, much easier.

Combating Cold Feet

For some reason, possibly from years of torturing my feet in ballet, or possibly just another pesky symptom of dysautonomia, I suffer from icy cold, numb feet. A local neurologist I saw deemed it neuropathy, but he did not know why I had it. This is the same neurologist who told me that "autonomic dysfunction is so rare, you couldn't possibly have it." Needless to say I broke up with this neurologist and now my EP recommended I see someone else instead. One of the issues I am hoping a neurologist will adequately address is my feet. They are duds. They feel heavy and numb when I'm walking around and are nearly always cold and bluish even at times when they shouldn't be (after exercise, bundled in wool socks and Uggs, etc). It is bad enough that I have to wear compression stockings everyday, but now I am practically living in my Uggs too. This illness can really hinder a girl's sense of style. I miss my old clothes and dressing up, which only happens on rare occasions nowadays. As far as I know, there is no magic pill to cure cold feet. So I have developed a few drug-free remedies of my own that work for me at home. So if you suffer from cold feet too, listen up my friends.

The first is to purchase an old-fashioned hot water bottle from your local drugstore. They are about five dollars and last forever. I would recommend airing it out outside for a couple of days before the first use if you are sensitive to scents since the smell of a brand-new hot water bottle is akin to the inside of a tire shop. Fill it with the hottest water as you can get out of your tap. Then place it at the foot of your bed either on top of or beneath your feet. I sleep with mine nearly every night and it usually stays warm until the next morning, especially if you put a blanket on top of it. Many people also use electric heating pads and blankets, which also work fine, but I am not a fan because of the electrical currents running through them. According to my EP, electric blankets can actually alter your heart rhythm, so I don't use them anymore.

The second option, my personal favorite, is the foot massage. Of course the foot massage experience is more enjoyable if someone else does it for you, but if there's no one else around, DIY. You will get the same benefits of enhanced blood flow to the area and experience temporarily warmer feet.

My third recommendation is to soak your feet in warm water either with your favorite bubble bath or my personal favorite, epsom salts, which provide some pain relief and actually help facilitate sleep. Epsom salts are affordable, unscented, and are full of magnesium which is good for muscles and nerves.

My last suggestion is to wear wool socks and heavily insulated shoes, boots, or slippers like Uggs. This is the best option if you are out and about or travelling.

So that about covers combating cold feet in the literal sense, but lately I have been suffering from metaphoric cold feet as well. I am apprehensive about possibly re-entering the workforce, wondering if my body will hold up for eight hours a day, or even a couple hours a day. Of course my job search has been limited to desk jobs because standing is out of the question. No waitressing or cashiering jobs for me, which unfortunately seems to be about all that is available in my area. The other issue is, I need to find a job that is within a five minute radius (maximum) of my house. Kind of hard to do when I'm in a largely residential area and the major industry here is retail, which revolves around being able to stand for long periods and lift things. Not to mention, I am qualified for and capable of something different. I hold three bachelors degrees and have five years of work experience in my field. But because I am not able to drive much anymore, most of the jobs I once dreamed of pursuing are out of the question. I am so glad that I graduated on time and with honors, but really, my education hasn't made much difference in my life yet because POTS came along and ruined my shot at becoming a productive member of the workforce.

If I could travel back in time and do it all over again, I would have traveled the world and taken more risks while I was still healthy. Instead I spent my time studying, working, volunteering, and living up to other people's expectations of me. I never really stopped to consider what I wanted. I was so determined to be valedictorian and go to a prestigious university that I sacrificed a lot of fun along the way. That is why, on my good days now, the last thing I want to do is waste the day applying for low-paying jobs I am overqualified for. Instead I try to spend my time enjoying the good days, having whatever little fun I am able to. Life's too short to do anything else.

The big question for many of us is, how will we be able to support ourselves in the future if we are unable to work? This is something that troubles me greatly. I have always been a good money manager, but in order to manage it successfully, there has to be something coming in. Right now I am pursuing non-traditional avenues of income such as work-from-home positions and my own resume-writing business. I believe in order to meet my financial goals in life without working a conventional full-time job, I will have to secure multiple sources of income. I have not yet pursued disability benefits because I am not sure if I have worked enough years to qualify, and I am stubborn, and would really like to at least try working again before I finally resign myself to the fact that maybe I can't work. But who knows, with any luck my body will start cooperating and I will be able to work again. I miss working. A lot. I miss the feeling of accomplishing something big each day. Now the little feats are victories to me: a trip to the grocery store, a decent night's sleep, or a day with little pain. This is my new normal. And I am trying hard to redefine my own personal meaning of success. It is so hard not to compare myself to others who work full-time jobs and contribute positively to society, because that used to be me. I really hope that an employer will give me a chance soon, a chance to at least try working again and see how my body reacts and adapts. The prospect of working again gives me cold feet for sure. But the prospect of never working again gives me even colder feet. Any suggestions on how to squelch these negative, nervous feelings of mine would be greatly appreciated...

Making the Most of Massage

Ever since I was a little girl I have loved and lived off of foot massages. Back then, I had an excuse. I was on my feet all the time because of ballet, which wreaked havoc on my toes and ankles. But now, I am up on my feet much much less as a result of POTS, however my feet and legs need massage now more than ever.

Massage is a form of passive exercise that stimulates circulation and nerve endings. It is also relaxing and can be therapeutic after an injury. I tried massage therapy on my upper body after my car accident. I had a few decent experiences and a few awful ones that left me in agonizing pain days after the massage. My body did not like deep tissue massage at the time. Everything was too sensitive after the accident. For me, it was all about finding the right massage therapist. I have tried five different massage therapists over the last couple years and have finally found the right one. She focuses on my feet and legs but will work on my neck, shoulders, arms and back if they are sore. At first she focused too much on my upper body while I was laying there with uncomfortably icy feet. Then it occurred to me: this is my massage, I am in control. So I spoke up for myself and explained that I had poor circulation in my feet so could she please spend more time concentrating on my legs and feet. And she was happy to comply. Amazingly, my feet usually stay warm the rest of the day following a massage. I only wish the noticeably warmer feet lasted longer than one day. Or better yet, I wish I could have a professional foot massage everyday!

The best thing about massage is, you don't necessarily have to have a trained and licensed massage therapist at your feet to reap the positive benefits of massage, which may include:

• pain relief
• improved sleep
• reduced heart rate
• improved circulation
• reduced anxiety

In fact, most people can easily massage their own feet to improve circulation and reduce anxiety. I am making self-foot massage a mandatory part of my daily routine, just like brushing my teeth or hair. I encourage whoever is reading this to try it too!

Irony and Balance

In reference to my last entry on Type-A personalities being prone to POTS, isn't it ironic how people who once prided themselves on being in control can't even control their own bodies as a result of dysautonomia? How intellectually astute individuals develop an illness that causes brain fog and thus inhibits their ability to think clearly? How former dancers lose the feeling in their feet due to neuropathy? I am one of those people who have lost the things I once defined myself by. All these things ripped out from underneath me leave me feeling completely vulnerable and a little bit lost in life. Although I try my best not to, I find myself clinging to the past when I achieved things almost effortlessly. Now, each day can feel like an uphill struggle. In the words of my wise EP, "EVERYTHING is way out of whack." Well that's for sure. My body is incapable of functioning in the same capacity it was before and I just have to get used to it. It is a strange sensation to not feel my own feet, but I suppose something I will just have to live with. I used to be a perfectionist, so it is hard to accept not feeling my feet or the fact that there may not be a remedy for the problem. All these strange maladies caused by POTS leave me wondering: what's next? Dry eyes, numb feet, dizzy spells, tummy aches, sleepless nights--what's next?

Isn't it ironic how the things a person loves and uses to validate and define oneself can be snatched away in a heartbeat...I am immediately reminded of the Alanis hit from the '90's.

I suppose it's time to find a new niche for myself, one which accommodates these strange and incapacitating ailments...it is difficult to thrive in society when it is hard some days to even leave the house. The unpredictability of symptoms is perhaps the most frustrating aspect of dealing with chronic illness. I am tired of not being able to make plans with people, or plans to do anything for that matter because I don't want to be perceived as unreliable, flaky, or incompetent. Needless to say I am a bit worried that I won't be able to cut the mustard at a new job when I can barely remain conscious for a 45 minute job interview. My resume, cover letter and applications are immaculate and usually sufficient enough to land decent interviews, but after the interviews I am sure the employers wonder why I was so fidgety and couldn't sit still for long. Of course they are not aware of what's going on inside my body. And sometimes I wonder if maybe I am doing myself and a potential employer an injustice by even trying to work again when my symptoms can strike at anytime. I figure, I will never know if I can handle it unless I give it one more shot. I know I have some valuable skills to offer someone out there, but the conventional 9 to 5, be-on-time-and-ready-to-work thing doesn't sound too feasible for me at this point in time.

In the meantime, I will continue to ride my recumbent bike, strengthen my legs and arms on weights, do some pilates, get in the best shape possible, and hope that someday soon my body will regain the strength, stability and stamina to be a productive and successful employee somewhere. My life lacks any sense of real balance right now. I spend a disproportionate amount of time at appointments that just leave me exhausted and full of more unanswered questions. I am striving to achieve some tangible balance in my life right now. I am making it a goal to accomplish at least one significant task each day, even on the bad days, and even if it takes me all day to do so. In my downtime I will be continuing to work on my personal fitness, nutrition, and of course, sleep.

Are 'Type-A' Personalities Most Prone to POTS?

I have an A-Positive blood type, a reformed Type-A personality, and now, a case of POTS. Sound familiar? I find it interesting that a lot of the literature on POTS indicates that many sufferers were typically overachieving, Type-A personalities driven to succeed. Isn't it ironic that some of the most ambitious and intelligent young people are struck with this debilitating illness that inhibits the ability to achieve certain goals--specifically the career-oriented ones? Sure, we can still be successful and productive individuals, but many of us perhaps not in the same profession we had planned.

As a former television producer and host, I oftentimes struggled to remember my lines during my "stand-ups" and my delivery would get worse and worse the longer I stood there in front of the camera. This phenomenon happened to me quite frequently before my diagnosis. My cameraman jokingly alleged that he thought I was coming down with Alzheimer's Disease, and I'll admit for a long time I actually wondered if he was right. I was not only embarrassed by my poor delivery of lines, I was also secretly scared that I may have quite literally been losing my mind. One day it was too cold to shoot my intro outdoors, so we opted to film it inside instead where I happened to be sitting down, and that time, I nailed my intro on the first take. After that shoot, he insisted on filming everything while I was sitting. Interestingly, this was still before I even knew I had POTS. Turns out my cameraman was actually on to something. He had absolutely no medical knowledge whatsoever and yet for him it was plain to see that I did not perform well standing up.

I now recognize that was all just a case of bad brain fog and inadequate bloodflow to the brain; something that I struggle with on a daily basis whenever I attempt standing tasks. And I of course modify my actions appropriately. I try to do all my important decision-making while sitting with my feet elevated or laying down. I also try to perform all cerebral work (reading, writing, paying bills) while lounging around in bed. That is definitely not how I would have set out to accomplish my most important tasks in the past, but it is my new reality. If a rude stranger like the one who left the note on my car were to see how I go about accomplishing my daily tasks they would surely accuse me of being lazy because that is how it must look as I lounge around with poor posture, my feet awkwardly sprawled all over furniture. But I have discovered that in order to be as productive as I can, I need to listen to my body and pretty much do what it tells me to or I will pay the price later. So I do my work from the couch or even from bed if I want to maintain some semblance of intelligence.

Why is it that many POTS victims had/have Type-A personalities? Does operating on overdrive for so long render our autonomic nervous systems more susceptible to malfunctioning? Or does living in a state of chronic stress simply weaken our bodily defenses, thus inviting potent viruses and leaving us vulnerable to irreparable traumas? In my case, prior to POTS I was a healthy, involved-in-everything individual who thrived on stress to accomplish my goals. I suffered from severe menstrual cramps one day each month and dealt with the occasional cold or ear infection, but most of the time I was able to easily power through a minor illness and continue my full life with minimal interruption. Senior year of college I developed infected wisdom teeth and after their removal my body was never the same. The severe car accident I endured three weeks later didn't help my body's recovery process either. So a virus, a surgery, and a trauma all may have contributed to my POTS. Perhaps my body was already enduring too much stress as a busy, driven college student and it simply couldn't handle all the physical trauma suddenly being thrown its way in less than one month's time. In a sense, my system couldn't cope. It felt like my body was thrown into shock and it signaled me of its distress with a racing heart, extreme insomnia and overwhelming fatigue. I will always resent my former primary care doctor who didn't bother to listen to me or my heart and immediately wrote me a prescription for Zoloft. Had I remained under her care I may not even be alive today. Too many doctors rely on a generic "anxiety" or "depression" diagnosis without bothering to thoroughly evaluate a patient's symptoms before dispensing pills.

This week, I am going to visit her office and leave an article for her, along with a polite handwritten note explaining that she may have been too quick to diagnose me with anxiety three years ago. I would also love to take her a copy of DINET's informative "Changes" documentary but unfortunately I doubt she would take the time to watch it. So I am going to include my favorite article on POTS instead. It provides a comprehensive overview of the syndrome without going into lengthy detail, so I am hoping she will take the time to at least glance through it.

http://www.ipej.org/0602/raj.htm