2013 Year In Review

This year brought a lot of major life changes and new beginnings for me. Mostly positive ones. I moved to a new home in a different location and am now (finally!) comfortably settled in here. I am living within walking distance to a major doctor's office, lab and my physical therapy clinic. I'm also extremely close to groceries, gas and restaurants. The convenience of not having to drive everywhere has simplified my life a great deal. The appointment running has calmed down a bit too with the exception of physical therapy and dentistry that is. The dental work I've had done and am still having done has tried ever fiber of my being this past year. I only have seven more fillings and five more crowns to go before I am completely cavity-free. I have had a grand total of three root canals, one crown and three fillings done this year. The physical, emotional and financial stress of dental work is enough to drive anyone clinically insane. I realize I have to keep plugging away at fixing my teeth to avoid future root canals and extractions, as those are not an option for me.

My physical therapy appointments though tough, are also rewarding. I don't look at physical therapy as just another appointment, I view it as an integral part of my weekly routine. I am already seeing results in the strength department. Luckily I build muscle pretty quickly which is helping to stabilize my ankle along with the rest of my wobbly body. I am lucky to live right next door to such a great physical therapy clinic with a therapist who also happens to suffer from hypermobility and TMJD herself. Doing physical therapy as a teen saved her from having TMJ surgery and that experience was what led her to the field. I feel optimistic about the progress that I am making and feel myself getting a lot stronger each and everyday. I only go twice a week but have an intense home exercise program that I do daily, sometimes in my living room and sometimes at my apartment complex's on-site gym, which is another nice feature of the new place.

The first month after I moved was fraught with major challenges concerning air quality. I had selected and moved into a ground floor unit, but unfortunately the complex was built on a wetland and as soon as the rains started in my apartment reeked of a strong, sickening mold smell. So much for life in a "luxury" apartment. A home humidity monitor I purchased revealed that the internal humidity reached 75% everyday. A normal internal humidity level is between 30-50%. Anything above 60% provides ideal conditions for mold growth. I fought with the complex to let me move to another unit. An option which was totally feasible considering it was brand new construction and only a quarter of the units were occupied. Their corporate management initially denied my request calling the mold smell a "subjective" complaint since they couldn't pinpoint the exact source of the mold. Upon conducting a bit of careful research and calling the city building inspector it turns out that the problem was much larger than bleach or exhaust fans could have ever fixed. In order to remedy the problem, the building would have had to have been torn down completely. Because apartments are technically classified as commercial space (even though residents inhabit them as their homes,) the city allows them to build on concrete slabs without crawl spaces. They didn't allow the concrete slab to cure long enough in the construction process which resulted in a subsequent sponge-like effect on the foundation every time it rained. Every time it rained that damp moldy smell crept up into my home from the concrete floor, through my carpet and into the living space.

I finally moved into a new apartment in the same complex at the beginning of October after enduring a month of hell in a moldy apartment. I am now living on the second floor of an apartment that doesn't smell of anything other than whatever I have been cooking in the kitchen. My sinuses are much better now and I can actually breathe out of my nose in the mornings again. Something I had wondered if I would ever be able to do again. Although sinus surgery may become an inevitability down the road due to a deviated septum and bone spurring, for now I have dodged a major bullet by avoiding surgery. And I am happy to put it off for as long as possible unless it becomes a necessity. My new apartment feels much healthier and I can breathe easy here which is a huge relief.

I am doing decent in the health department at the moment (aside from a nagging, two-week old mystery upper right quadrant and back pain that landed me in the ER for bloodwork, an abdominal ultrasound and a HIDA scan to no avail and is currently being investigated by my primary care doc). My health is something I do not take for granted at all. For the most part my POTS is controlled and doing much better now that I've removed myself from the moldy environment of the other apartment. Earlier this year I had a scary bout with benign positional vertigo that finally subsided after taking a month round of Augmentin antibiotics for my sinuses. It was a scary time for me. Every time I layed on my right side or flat on my back I would get the spins. This continued for a few months with my doctor telling me it was "just some inner ear virus," and an ENT insisting it was benign positional vertigo spurred by spending too much time in a dental chair as I had a scary incident where some heavy duty dental drilling back in the chair spurred a major attack. Whatever it was, it is no longer happening to me now and I am so thankful. I had a follow-up with a new ENT the other day and luckily they were not able to trigger the vertigo in his office. Because of my history with rotational vertigo during dental work though, he wants me to undergo a more sophisticated test called a VNG early next year to measure eye movements during different positions and then conduct a repositioning procedure in the office to resposition any inner ear crystals that may have become dislodged.

In 2014, I still have plenty of work to do. I would like to make more strides in the health and fitness department with an emphasis on healthier eating. I definitely have some work to do in that department. I am fortunate to have a wonderful boyfriend who enjoys cooking for me, the problem is he enjoys cooking tasty comfort foods without worrying about things like nutritional content or calories. Oh well, I can't complain too much. I know how lucky I am to have someone who cares about me and takes good care of me. I am finally in a healthy relationship, one that I don't have to change myself for. Compared to my verbally abusive ex, this experience has been night and day and I am so thankful.

So to sum it all up, this year has brought some health ups and downs, but overall I'm in a good place health-wise. I'm in a good place location-wise after finally moving into a healthy apartment. And I'm in a great place relationship-wise with someone who loves and respects me. Next year I intend to get my body in peak physical condition and hopefully start to renew old hobbies one by one without destroying my body in the process. For now I will have to say no to ballet but may take up pilates and yoga again in the new year.

On Losing the Ability to do What You Love

"...I was dancing again, every muscle effortlessly engaged, articulating in perfect synchronicity."

About a month ago, one of my best friends sent me an article that brought me to tears. While I'm sure her intention wasn't to make me cry, this article hit way too close to home. She sent it to me because she knew it would resonate within me like it did within her. We had both been dancers in our former pre-POTS lives. More specifically, ballerinas. Living a beautiful life doing what we loved and were perhaps born to do. We were introduced to each other through a mutual friend who also had POTS and recognized that we were destined to be besties. We bonded instantly over our similar past experiences and our current shared love of reality dance TV. While watching Breaking Pointe is no substitute for dancing ourselves, it certainly does help fill the void.

The night before I received the article in my Facebook inbox, I had had a dream that I was dancing again. It was haunting, but not a nightmare. It was a very vivid, beautiful dream that made me feel very much alive and self-actualized in those brief moments I that was dancing again, every muscle effortlessly engaged, articulating in perfect synchronicity. Unlike my current reality, I had complete control over my own body, and it felt good. Exhilarating even. I was in my old ballet class with my former instructor Miss Mary guiding my movements across the floor. Except I was my current self in present day, just in an alternate reality. A reality much more fulfilling than my own.

In my present reality, I am currently in physical therapy for a bum ankle. Or at least what I thought was a bum ankle that to my dismay actually turned out to be two bum ankles and a bum hip. It's no secret that years of ballet takes a toll on one's body. And perhaps even more of a toll when you're hypermobile and repeatedly encouraged by over-zealous instructors to relish in your perfect turn-out. While I haven't danced ballet for several years, apparently I still walk like a duck, my hips stuck in a perpetually turned-out state. My physical therapist also happens to be hypermobile and is good at correcting these issues. She uses pilates as a way to strengthen muscles and thereby control her own hypermobility. I did not realize how bad my ankles had gotten until she said that I need to learn how to walk all over again. Apparently I've been doing it wrong all these years.

As I raised into releve alongside a supportive countertop in physical therapy, I kept having flashbacks to the ballet barre and and all the hours that I had spent there, nearly deforming my own body from three years of age onward, as it was growing and developing into the body I have today. Going to ballet class was as routine as brushing my teeth in the morning. As the years of class went on, all our bodies grew to be the same shape and size, so that we were all nearly identical and could all wear the same size costume if need be. There was certainly not much physical diversity in ballet. Most of us were naturally hypermobile to some degree. If you weren't, you simply couldn't compete in the ballet world. Or, you had to work very, very hard at it. Those are the type of dancers I respect the most. The ones who have to work at it. Now that I'm aware of my hypermobility, I realize I possessed an unfair advantage in the ballet world.

I have been asked the following question several times by friends and family: if you could go back in time knowing what you know now, would you have still danced ballet? The answer is undoubtedly yes. Although it may have caused irreparable damage to my body, I was simply meant to do it. And there has always been a void since I stopped dancing. I consider myself a generally happy person, but there's always been something missing. And I know precisely what that something is.

Ballet was my outlet, my escape, my passion. It helped quell the obsessive compulsive tendencies I had hidden as a child. It also came so naturally, more naturally than sports or other athletic pursuits. I didn't have to work at it. It was effortless. The rest of my life has certainly not been effortless by comparison. Physical therapy is hard work. I am developing a new awareness of my body, and an appreciation for what I put it through. I am trying hard to correct bad habits that ballet helped me acquire over the years and push through the pain. I carry with me everyday now the physical reminders of having once been able to do what I loved. And to me, it's all been worth it. If I could still dance ballet today, I absolutely would.

From Worrier to Warrior

Worrier: A person who torments oneself with or suffers from disturbing thoughts, cares, anxieties; one who frets.

Warrior: A person who shows or has shown great vigor, courage or aggressiveness; soldier.

Seems it has been awhile since I posted a general health update on all the random happenings of my crazy body. And a lot has been happening. The year was off to a crappy start with an emergency appendectomy that seemed to set the tone for the rest of the health craziness that would ensue. I was just relieved I awoke from surgery and that it had been a completely routine procedure free from any major complications. I had some MAJOR tummy troubles before (probably just my appendix going bad) and after the appendectomy but I saw a GI doc who gave me some medication to take briefly that seemed to do the trick and I am now on a once-daily acid-reflux medicine called Dexilant. It is a great drug. Not quite strong enough to knock out all of the acid when I eat junk foods, but on the days I forget to take it I notice what a big difference it is making. And unlike Prilosec which I had a hard time remembering to take twice daily, I only have to take Dexilant once daily (and believe me, that's hard enough to remember!) The caveat? It is an EXPENSIVE drug. Luckily I am now enrolled in a prescription discount program sponsored by the manufacturer so I get a 30-day supply for $20 instead of over $200. I hate the fact that I am now on a daily prescription as I try not to take anything since my body is hyper-sensitive to meds. Luckily I haven't experienced any noticeable side effects from the Dexilant so I will continue my daily regime in addition to improving my dairy-free diet which I am hoping to gradually make more alkaline in the near future.

For several weeks after the appendix surgery I was worried I might be experiencing gastroparesis symptoms as so many other potsies do, but my ravenous appetite has now returned and so I am convinced it was just acid reflux coupled with a little post-surgical constipation. Although I did not take any narcotic pain medicine after surgery, apparently constipation is almost a given side effect of any abdominal surgery even among the general population. I even received my first (and hopefully last ever) enema in the ER this year a few weeks post surgery. Talk about uncomfortable. However it was also comforting to discover that I am not the only one who has had to resort to such extreme and unpleasant measures after abdominal surgery, for once I was dealing with a COMMON problem. Which was refreshing for a change. And my scars are tiny and healed very quickly. They are barely noticeable anymore.

Speaking of skin, next month I have to see the dermatologist to get a "suspicious" looking toe mole biopsied. I knew all those years of daily flip-flop wearing would eventually catch up with my feet. No one ever puts sunscreen on their toes. It is an overlooked area of the body. I also have a few other spots they will probably want to biopsy since I have a family history of skin cancer. I doubt it is anything serious, but my insurance deductible finally having been met dictates that it's time to knock that appointment out of the way. Last Valentine's Day my mom had a basal-call carcinoma removed (successfully) from her face and that served as a big warning sign that it's time to pay more attention to my skin. My grandpa is also currently undergoing various skin cancer treatments including a new laser-light treatment to remove pre-cancerous growths all over his head. I am really hoping that this new treatment will clear it up for him because it's a painless, non-invasive approach and he has undergone painful removal procedures several times already.

Truth be told, random but important appointments like the dermatologist visit have taken low priority these past few months as I've been struggling with the worst pain of my life from intense TMJD headaches. I seem to be stuck in the bargaining stage of grief where I can't help but wish it were any other joint affected but my TMJ. That is the one I need to use the most in order to speak, feed myself, function. It is so hard to get by in the world without talking. People take that ability for granted everyday. I know I did. This pain really plays head-games with me since it is worst after speaking or eating (basically the two things I live for). It feels like my body is punishing me anytime I try to be myself and reclaim my lost identity by making a phone call or eating a burger (with a knife and a fork, swallowing the bites whole). My jaw goes out and the pain sets in. Punishment for doing the things I enjoy. Heck, just for doing the things that are necessary to sustain life. A food-loving girl can only survive off of smoothies and soy yogurt for so long. And I tend to lose all my marbles when I'm starving and not eating the kinds of foods that my body demands. Throw in days upon weeks upon months of pain-induced sleep deprivation and it's a recipe for disaster and dysfunction. Just getting through each day has proved to be quite a challenge the past few months and the pain has reached a point where the intense menstrual cramps I am accustomed to getting every month pale in comparison (although they have not changed in intensity at all). In fact, if anything my periods have been getting progressively more painful over time too (will deal with that one later as a trip to the gynecologist is not high on my priority list at the moment either). It's just that I know from past experience that my period represents a temporary state of pain, which makes enduring it much more bearable. There is an end in sight. TMJD pain has been discouraging because I seem to get the pain episodically but unfortunately these flare-up episodes last for months on end with no apparent rhyme or reason and I never know when the pain will finally cease. If the smell of BenGay didn't redden and burn my eyes so badly I would be rubbing it all over my face, head and neck on a daily basis.

Needless to say I have been "doctoring" for my TMJ issues again out of sheer desperation and have finally stumbled upon a few knowledgeable practitioners who didn't dismiss my pain with a prescription for valium and a box of tissues (as my gem of a PCP did at the beginning of this flare-up). I am now seeing a physical medicine doctor who specializes in pain management. He has a solid understanding of the complexities of the musculoskeletal system and has seen a few other EDS patients as well.

I am also seeing a physical therapist who has worked with Dr. Tinkle in treating his EDS patients. My jaw must have dropped open in disbelief when he not only knew what EDS was but had successfully treated it before. I will be attending physical therapy sessions with him 2-3 times weekly and receive an ultrasound treatment to each TMJ which so far has helped immensely considering I've only had two sessions. I'm optimistic that ultrasound therapy will provide some relief as my pain seems to be muscular in nature. I am also undergoing the needles in acupuncture again twice weekly for now but hoping to wean off to once weekly soon.

I gave massage another go last week with a knowledgeable practitioner who had actually had a cervical fusion surgery a few years back. I was also impressed with how well she knew the body but I am going to hold off on massage a bit longer as I think I'm doing too much right now and the sheer number of appointments every week alone is exhausting. Massage is supposed to be relaxing but I'm too stressed out by all these appointments to fully enjoy it. Once I wean off the acupuncture I would like to incorporate massage into my weekly regime. Thank god I had that appendectomy and my insurance is finally kicking in to cover these treatments (until the end of the year, that is!) I am dreading the day January 1st rolls around when I will have another deductible to meet before I can receive treatment of any kind.

Oh, also one more totally random finding worth mentioning that I probably haven't shared yet. This year so far I have had multiple x-rays (which revealed nothing except for constipation), two or three abdominal CT scans (found appendicitis), one head CT scan (they found a sinus infection on that one, told them I didn't need a CT to know that...) and an MRI of my TMJ's. I am supposed to get a full upright MRI of my head, neck and spine to check for an acquired chiari malformation and all related issues but I have decided to wait until after my birthday to do that because I'm not sure if I'm emotionally equipped to deal with another bad test result right now. Earlier this year my doctor decided to order an ultrasound of my neck to examine the lump in my throat I felt upon swallowing (which reminds me I have not yet scheduled the endoscopy I am supposed to get either. TOO MANY TESTS!) Anyway I did not expect them to find anything at all on the neck ultrasound. Figured it would just be another futile test, but to my chagrin they did find a small thyroid tumor. At 3 mm it is still too small to needle biopsy so it is just something I will have to have monitored yearly to make sure it doesn't grow any bigger. If it does then I will have to have a biopsy. But for now it is not dangerous and highly unlikely that it is any type of cancer. The endocrinologist I saw seemed pretty confident that thyroid tumors are an extremely common incidental finding and most of them are not harmful. Nonetheless it was and still is difficult for a worrier like me to forget that it is there...

Which brings me to my closing thoughts. The chronically ill are a very special population. We are not just worriers. We are also warriors. Can we be both simultaneously? Yes, although the two concepts would seem at odds to most people. We assume both roles everyday without even realizing it. Being a warrior is hard work. Not worrying about our health is even harder. I cannot imagine any of my "normal" friends or relatives enduring the endless medical tests and treatments we have. It takes persistence. Patience. Mental and physical fortitude. In between doctors' appointments, we often forget to live. Or at least I do. My goals have gone from hosting my own talkshow to simply making it to my next doctor's appointment on time. But does it really matter if I am on time? Or even in one piece when I arrive? Not so much in the grand scheme of things. I have accepted the fact that I am imperfect. All the labels and diagnoses mean very little to me anymore. I just want to be happy and pain-free, warts and all. And to transform my inner worrier into a proud warrior for good. Just like the musically-gifted Mr. Mraz has done...