Year in Review

Although I don't write a Christmas letter or anything of the sort, I figure my dear blog readers tune in from time to time throughout the year and are probably all too aware of the health goings-on in my life. So I will try my best to keep this brief and not too negative. It has been one heck of a year to say the least!

Let me start with the good. Certain aspects of my health have improved significantly. My resting heart rate is good! Normally anywhere between 56 and 66 beats per minute on any given day. And there have been many days where my standing heart rate hasn't been so bad either! (70's, 80's, 90's, I rarely reach the 100's anymore!) I am always thrilled to check my blood pressure monitor and see relatively normal numbers there too. It helps me breathe easier when I think about how those same numbers used to look a year ago. Can I say my POTS is gone? Well, no. There are days when my HR still spikes upon standing, I still get the occasional dizzy spell and brain fog seems to plague me on a daily basis. But when I compare my symptoms and my numbers to what they were 5 years ago the difference is dramatic. And there are even some days where I even feel somewhat normal.

In terms of chronic pain and limitations however, this has been the worst year of my life. The TMJD pain is unbearable half the time and it impacts my life severely. I have had to drastically modify my diet to soft foods exclusively and master the art of being quiet which has proven very difficult both emotionally and functionally. It is really tough to not be able to make phone calls to doctors or insurance companies. Not to mention not being able to speak to friends and family very often. I have had to shell out $1300 for a home ultrasound machine like the kind they used on me in Physical Therapy after my insurance company cut off physical therapy completely. It is about the only thing that brought me any real relief. I am currently going through the appeal process with my insurance company about covering the ultrasound machine as durable medical equipment for a chronic condition.

A local neurologist also thinks Botox injections would help quell the muscle spasms in my jaw and facial muscles, but insurance does not want to cover that either because it is not FDA approved for anything other than the treatment of migraines (which I am not having). Although my medical insurance does cover TMJD, they certainly don't seem to cover any of the treatments that have worked for me. So the battle continues. Sadly, this type of battle has become all to familiar to many of us. Having to fight for the basics all the while fighting our own battles against our ailing bodies. My wish for the new year is that less people will suffer and struggle with their insurance companies. That we will not have to fight as hard to receive adequate treatment and relief.

May my friends and readers experience improved health and  relief from chronic conditions in 2013. Keep on fighting the good fight and never never never give up!

Fall Update

I love the fall. It is definitely my favorite season. We had been spoiled with pacific northwest sunshine and perfect crisp fall weather until a couple days ago when things took a turn for the worse and the rain set in. And when I say rain I don't mean light showers. I mean monsoons that result in massive puddles and darkness all day. Don't get me wrong, we desperately needed the rain because of all the forest fires we'd had lately. The air is much cleaner now that it's rained and I'm breathing easier because of it. Pesky sinus problems had been plaguing me pretty badly in September. I despise sinus headaches. (Any readers out there have any natural remedies for sinusitis? Not a big fan of antibiotics...)

But other than sinus issues that things have been looking up health-wise. Physical therapy is going well and I am blessed to be working with therapists who are familiar with both TMJD and EDS. Don't get me wrong, I still have aches and pains, but I haven't been dependent on round-the-clock tylenol as I had previously been. I have also discontinued taking 1/2 a flexeril at bedtime because it was giving me tachycardia all day long as a side effect or reaction. Most prescription drugs seem to disagree with my constitution. I had also grown tired of the daily tylenol for months on end. Especially after Dr. Oz mentioned how over-the-counter analgesics like tylenol and ibuprofen can lead to hearing loss after longterm use. Considering that my grandpa has better hearing than I do, it's probably not a bad idea to cut way back on the Tylenol consumption. My ears ring a bit and my grandparents both insist that I'm hard of hearing. Perhaps it's just because I prefer not to have to strain to hear the television. Or maybe being front row at all those concerts as a teen wasn't such a good idea after all. Or maybe it really is the years of chronic Tylenol use. But I have noticed the need to turn up the volume on my iPod lately.

I attribute my pain relief and improved POTS symptoms to two things. The first is that I have begun taking a multivitamin, extra C, and cod liver oil which has helped A TON with joint pain. I have also begun researching amino acid therapy after being inspired by what I read on lessflexible.com. A woman with EDS began an injectible amino-acid regime (monitored by a physician of course) and explained how it helped her become less flexible in regards to her hypermobility form of EDS (the same type I am afflicted with). I need to do a bit more research before delving into the complicated world of supplements but her personal experience sounds promising and may very well hold some validity.

The second is that the barometric pressure has been high and stable (with the exception of the barometer falling the past few days). I definitely tend to have more controlled symptoms when it is sunny but not hot and coincidentally when the barometric pressure is high and consistent. Like wearing a giant compression stocking. Thus a controlled, comfortable environment is very helpful for controlling POTS symptoms.

The fall has been filled with appointments. Trying to get well has become a full-time job. I am trying to fit in a bunch of random appointments before the new year since my deductible has finally been met. This means I will be continuing with physical therapy, a few more acupuncture sessions, adding massage and hopefully some counseling too. My EP also wants me to go to the autonomic testing lab at the university for autonomic testing and see one of their EDS specialists as soon as possible. I still have not proceeded with the upright MRI of my brain and spine as I am scared of what the results could show. I am also seeing a sleep specialist and an ENT before the end of the year. Too. Many. Appointments. But it beats having to pay for them next year so I am trying to be diligent and put in the time and effort to hopefully improve more of my symptoms. Fingers crossed for some decent doctors who aren't jerks and don't waste my time. On that note, I am digging the lyrics to Sara Bareilles' song, 'King of Anything.' Remind you of interactions with clueless know-it-all doctors much?

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...