Survival Mode

The past few months I've been stagnating in survival mode due to horrendous, persistent pressure headaches at the base of my head and upper neck. Throw in some charlie-horse muscle spasms on the sides and back of my skull and in my upper neck that are palpable to the touch and it's a recipe for intense pain, the kind that keeps me awake at night. When I finally do pass out from pain and exhaustion, the pain promptly awakens me again in a mere two to three hours. Subsisting on two to three hours of sleep per night is enough to render even the sanest of people completely mad. This lack of sleep, coupled with intense chronic pain really gets me down at times. I feel like a zombie most days and on my "good" days where the pain is bearable and I can attempt to distract myself from it, I get overzealous and overdo it because I never know how long the low-pain stretch will last and I feel the need to take advantage of those times whenever I can. However, on the low-pain days, all my body seems to want to do is catch up on sleep, but my mind is telling me I need to get out of the house and enjoy whatever I can before the headache becomes hellish again. The worst part of all this is, my doctors still can't seem to tell me with any certainty whether this head pain is a result of my 5mm chiari malformation or more due to my atlantoaxial instability (right lateral subluxation of C1 on C2). Or it could possibly be occipitoatlantoaxial instability (meaning my ligaments are so lax due to EDS that they're failing to hold my head on straight). But again, not even neurosurgeons can pinpoint with any certainty what exactly is causing the intense pain.

My best bet, no doubt, would probably be to travel to a place like The Chiari Institute of New York where they fix the instability and decompress the chiari in the same 6-hour procedure, taking a team approach with two surgeons present in the operating room, one to fuse the upper vertebrae and one to decompress the chiari. That means (hopefully) only having to go under the knife once and ensuring that my bobblehead is stabilized. However, New York might as well be Mount Everest to me right now as travel has become just about impossible lately. Even car rides in my trusty Aspen Vista cervical collar have become almost unbearable. Any movement really triggers and worsens my neck and head pain, which would suggest instability is likely the pain-causing culprit. This is not to say that my chiari is not causing me any problems. My balance has become really bad this past year or so. I used to be so graceful, so poised back in the olden days when I danced ballet. Now I am so clumsy I am tripping over my own feet, dropping things left and right and I have to concentrate really hard on basic tasks like walking or carrying something. I know that is not normal, not for me, not for anyone. I used to enjoy going on walks even after getting sick with POTS, but lately I fear that I look like a drunk person trying too hard to keep my balance and I wonder if people think I'm a drunk when I'm out in public...

I know that it's definitely time to do something. I've been told by my physical therapists, neurosurgeons and primary care physicians that unfortunately physical therapy is never going to remedy the problem, no matter how diligent I am with my exercises. My ligaments are too lax thanks to stupid EDS hypermobility. And while physical therapy can help to strengthen the surrounding supportive muscles and hopefully preserve the rest of my neck function and help provide stability to my neck's lower vertebrae (I currently have four bulging discs in my c-spine and some mild arthritis between all my vertebrae), the upper vertebrae are probably going to require a cervical fusion procedure to correct the instability. The prospect of a risky neurosurgery makes me sick to my stomach.

In terms of major surgery I've only had an emergency appendectomy, and fortunately I didn't have too much time to ruminate on the issue or be scared as I wasn't really given a choice. I do remember asking the on-call surgeon if I could just go home, research the procedure for a bit and then return the next morning for the surgery. He informed me that I could do that, but then he'd see me again in a day or two at most with a ruptured appendix and have to perform an even more painful surgery with a much longer hospital stay. So I consented to have a laporoscopic appendectomy that same night, and honestly, it was the best decision I ever made! I was in the hospital recovering for one day and then they released me the next night. Luckily the nurses and anesthesiologist were all very careful with me because of my dysautonomia and EDS. I was well-hydrated and there were no complications. I took some extra strength Tylenol at home and didn't even need the narcotic pain meds they prescribed. It hurt, sure, but in a few days the worst of the pain had subsided and I was able to get on with my life and start eating and drinking normally again.

I have a feeling that neurosurgery is a whole different ballgame though. I don't like the thought of anyone cutting into my neck and head. I just don't. It's icky. Necessary, but icky, and frankly very scary. There's too much important stuff up there. I have thought long and hard about what will happen to me if I don't have surgery though and the possibilities are also scary. I can't get in any more car accidents or sustain any type of major injury as it could easily be game over for me. Internal decapitation does not sound like a good way to go. So although it will be scary and painful, I have decided I need to stop being so afraid and proceed with surgery at the soonest opportunity. I do not want to live perpetually in pain and a neck brace. It would be nice to not have to wear this thing indefinitely. And even nicer to be out of pain. I can barely remember what it feels like to be pain-free but I know it would be amazing and I could accomplish so much more with my time and get so much more out of life.

Most importantly, if I get my health back I can devote 110% of my energy and focus to helping others who are still in pain and suffering from chronic, painful and misunderstood conditions like dysautonomia, EDS and chiari: the trifecta or "The Sara Syndrome" as the brilliant Dr. Rekate has coined it. Also, if you haven't seen it already, last week The Today Show featured a news segment about a young boy suffering from the debilitating effects of chiari malformation, dysautonomia and EDS. Please watch his story and share with your friends and family. This kind of national, mainstream media coverage is a huge deal for patients like us.

Visit NBCNews.com for breaking news, world news, and news about the economy

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...

BackCaddy Review!

Anyone who doesn't know about the CaddyWraps line yet should. Not just people in chronic pain (like me lately) but anyone who has a pulse. Last month I introduced you to the FaceCaddy, which has been a godsend for helping me cope with intense TMJD headaches. Anyone who goes to the dentist should own one!

The BackCaddy utlizes the same time-tested insulated ice/heat technology to provide lasting warmth or cold therapy to relieve sore muscles and joints. The BackCaddy helped me get through a particularly painful period this month: I strapped it around my waist to help relieve menstrual cramps. Normally I wear a ThermaCare Heat Wrap but those are a bit pricey and add up since they are a one-time use product. I also have a trusty hot water bottle but it sometimes leaks and I have actually burnt myself with it before because I filled it up with too hot of water.

The BackCaddy on the other hand, is foolproof. Comfortable, portable and powerful. I popped the large gel pack into the microwave for less than 2 minutes, placed it in the insulated BackCaddy and strapped it on for several hours. To my pleasant surprise it stayed warm until I removed it! I REALLY REALLY wish I would've owned one of these right after my appendectomy earlier this year. The hospital sent me home with an awkward, rock hard ice pack that leaked. The BackCaddy would have saved me from extra aggravation and suffering for sure.

I recommend the BackCaddy without reservation for anyone suffering from EDS, back problems, menstrual cramps or even abdominal surgery recovery. It is available in two different adjustable sizes. At 5'3" and 115 pounds I am far from a giant, but I was able to wrap the BackCaddy taut around my waist to fit perfectly and comfortably.

Also, I was pleasantly surprised to find that the BackCaddy features gentle compression which is GREAT for POTS patients, especially in the abdominal area where our blood tends to pool following meals. Would work well with the gel icepack (included) in the summertime as a more affordable alternative to a cooling vest and the extra compression the BackCaddy provides is an added bonus for any potsy.

You can purchase a BackCaddy and the entire CaddyWraps line at CaddyWraps.com or Amazon.com.

Top Ten Trader Joe's Products!

Although my tummy has given me considerable trouble the last few months both before and after the emergency appendectomy, I can still find things to eat at Trader Joes. The other evening it dawned on me that I could barely survive without a Trader Joes nearby. For one thing, it is much smaller than the Safeways and Albertsons of the world and therefore more manageable and less of an energy drain to shop there. Our local Trader Joes also has benches in the store even though it is small. Much appreciated during all those potsy shopping trips.

If I go at night the lines are typically short and the aisles uncrowded so I can read labels if need be. I also like Trader Joes because their products are typically less processed and contain more natural ingredients with names I can actually pronounce. They also have a nice selection of organic products at competitive prices. It is a great place to shop if you have issues with food allergies or intolerances. I am allergic to sulphur dioxide, often used to preserve dried fruits with. Trader Joe's products are clearly marked with the allergens so I don't have to hunt through the whole ingredient list to figure out if I may be allergic to something or not.

Here's a list of my favorite Trader Joes products, in no particular order. If you try a product you don't like from Trader Joes, they will gladly take it back, no questions asked. So your purchases are essentially risk free. A nice way to try new things without having to worry about wasting money on something you may not like. That said, you wont need to return any of the items on my list! I recommend the following without reservation:

I HATE Hospitals!!!

These past few weeks I have spent enough time in the hospital to last a lifetime! I suppose it was necessary to be admitted for a few days when my appendix was removed but I would have really liked to have avoided these last two ER trips. One for strange intense back pain linked to a bladder/kidney infection, one for nausea, vomiting and constipation which happened last night. Upon arriving the triage nurse casually informed me that they had "just lost number two" so I would be getting a room soon. Lovely. From what I gathered from my nurses later she was an old lady who they didn't get a chance to implant a new pacemaker in before she passed on. And I had the privilege of getting sent to the same ER room she passed away in minutes earlier. Something about that just doesn't seem ethical and it certainly gave me the heebie jeebies.

It's not just that I hate hospitals and everything about them. It's the fact that the ER docs always insist on taking more and more blood and repeating the same labs they did a few days prior. Of course they always come back looking pretty good with the exception of slightly low potassium which I can only assume is the result of my excessive water drinking. I also hate how they tell me everything looks good except I'm just a little dehydrated. How on earth, is it humanely possible to be dehydrated when one drinks as much water as I do? I drink more water on a daily basis (and juice, milk, v-8, soy/rice/coconut milk,) than everyone I know does combined. I also NEVER drink coffee or anything caffeinated and yet the doctors and nurses never fail to ask if I drink a lot of coffee because of my high heart rate. The answer is always NO! I never drink coffee and have not even had a sip of it in the past five years. It would be really nice if they started reading my chart. NO I do not do drugs and never have. NO I do not even take any prescription drugs after surgery because I have a high pain tolerance. All I ever take is tylenol. Because that's about the only thing I'm not allergic to.

I am the type of person who has always avoided shows like 'ER,' 'House' and 'Grey's Anatomy' because they are anxiety producing for me. So to have to go to the hospital this much over the past few weeks has been draining not only physically but emotionally. I think I definitely suffer from white-coat syndrome. There's probably no remedy for that except to avoid doctors. Which is what I plan to do now for as long as possible. Wish me luck!

Emergency Surgery!

A few nights ago, one of my biggest fears came true: that I would have to have surgery. After I had my wisdom teeth pulled in '07 and fell sick with POTS, I hoped to never go through another surgery, especially not an emergency one! My stomach has been bothering me big time since a few weeks before Christmas but I figured it was just from finishing up a round of antibiotics for a sinus infection mid-December. The doctor agreed that the antibiotics had simply gotten rid of all the good bacteria in my gut and put me on prilosec and probiotics (neither of which seemed to help at all).

After about a month of eating mild foods and still feeling awful, Thursday morning it got to the point where I couldn't eat or drink anything so I went to Urgent Care where the doctor poked around my stomach and sent me to the hospital for a CT scan of my appendix. The ER doc however, was skeptical of my appendix and thought it might be my gallbladder instead so they did a bunch of bloodwork, an ultrasound of my insides, then an x-ray, and last but not least the CT scan which revealed the problem: my appendix was inflamed and had a stone called a fecolith inside of it.

This actually came as quite a surprise to me because after 7 hours of tests and no food and drink in the ER, a nurse, (the same nurse who told me I had anxiety this summer after my blood pressure was 190/130 from the birth control pill) came in and told me that all my tests looked great but my heart rate was a little high so the doctor would probably come in to talk to me about possible anxiety (she obviously doesn't have a clue about what dysautonomia is!) So boy was I surprised when the doctor came in ten minutes later and told me that he was very concerned about my CT scan and that they needed to operate on my appendix that night and the surgeon would be arriving shortly. My first question was, "Are you kidding? The nurse just told me it was just anxiety!" And then I promptly started crying like a baby and confessed that I was so afraid of surgery because I had been sick ever since having my wisdom teeth pulled.

They did a bit more bloodwork and then whisked me off to meet with my surgeon who seemed very caring and competent. He knew a bit about EDS and realized that he would have to take extra precautions and that the incisions might not heal as quickly as they would in a typical patient. He and the anesthesiologist also asked about my autonomic dysfunction before the procedure. The anesthesiologist joked that she was more nervous than I was so maybe she should knock herself out instead! When I woke up in the OR my abdomen ached a bit but it was my throat that was really burning from the breathing tube they had inserted during the surgery and I was coughing and coughing. Apparently the anesthesiologist didn't give me very much of the drug that dries up secretions because it would have also elevated my heart rate so I was left with a lot of extra phlegm. They gave me three shots of fentanyl before taking me up to my room. Once I got into my bed I felt a little better until I threw up clear liquid all over everyone and all over myself. But my stomach felt way better after that!

My nurses were all very nice and caring and the first nurse I had was especially nice. I received a ton of IV fluids before and after the procedure and a few shots of morphine which didn't help very much and made me feel terrible. The morphine made me hot all over and made my shoulders and joints ache so I didn't take any more of it. I had one vicodin after that and it made me sleepy but didn't take away the pain either. I slept less than an hour total in the hospital after my surgery because of the pain.

Since I've been home I've slept a total of twelve hours though! My body had to catch up on its sleep deficit I guess. I have taken two tylenol since I've been home and think I will be able to get by with the pain okay on just the tylenol. They joked around in the hospital that I must have a pretty high pain tolerance to put up with appendicitis for that long before coming in.

I counted up all the different drugs they gave me in the ER, OR and in my room and added up a total of 12 that I know of. I am a person who hardly takes any pills because I am either allergic to or sensitive to just about everything. Here is the list of things they gave me and their purposes:

-IV Saline for dehyration
-IV Potassium for low blood potassium levels
-IV Protronics for upset stomach
-Oral GI cocktail for upset stomach
-IV Contrast Dye to see appendix in CT Scan
-IV Flagyl antibiotic as a pre-surgery precaution
-IV Fentanyl for immediate post-surgery pain
-IV Morphine for pain during and after surgery
-IV Anxiety right before getting wheeled into OR
-IV drug to dry up secretions before surgery
-General Anesthesia
-Oral Vicodin for pain

So far that's all I am aware of them giving me. I may have received more drugs during surgery that I wasn't aware of but when I get my medical records back for this I will find out.

I am so glad to be back home again. They warned me that the recovery may be slow and painful and to try my best to keep hydrated and keep eating, breathe deep and walk around a little every now and then to keep from getting things like pneumonia during recovery.

They performed the surgery laproscopically so I have three small incisions in my abdomen and they did not use stitches or staples but rather dermabond glue and I am expected to heal normally. I had some bruising the second day but he said that was normal. My abdomen really only hurts badly if I move around or walk. I am supposed to hold a pillow against it for now.

I am really not thrilled that I had to have surgery but I am very lucky that it hadn't ruptured yet or things would be much worse right now. I am lucky that my surgical team was fairly competent and didn't dismiss my existing health issues, in fact they seemed to take them very seriously. I am lucky I had a support system there to help me through it and a nice team of nurses. And I am certainly glad I listened to my body and went to the doctor when I did! For over a month I tried to tough it out at home but doing that any longer would have been a big mistake!

As I go through the recovery process, I hope to get stronger and stronger. What are your experiences with surgery and recovery? How long did it take you to recover? If you have any tips or advice to share it would be much appreciated!