Mast Cell Manic

A flare has me pretty disenchanted with the world right now. It also has me wondering if mast cell activation syndrome is the key to what keeps me in this strange cycle of never being able to sustain any sort of stability for very long. When you have an immediate, notable reaction to something that kicks off weeks of symptoms like I’ve been going through, it’s pretty hard to deny the direct link.

The irony is that I triggered a mast cell attack trying to address a different trigger. I noticed a little mold growing around my stabilization bar in the shower and I knew we’d run out of mold killer, so I picked up a gallon at Lowe’s and sat it in the floor of the back seat on my way to the grocery store. Well, it tipped over and I guess the lid wasn’t on very tight, so it began to leak. By the time I came out of the grocery store with a full week of groceries, my car was completely filled with the smell of bleach, which happens to be a very strong trigger for me going back to my childhood.

a4400ff49eef894a870a654c7c54f673By the time I got home, I had a terrible headache and felt nauseated and confused. My lungs and sinuses burn and I’m coughing and congested. Things have snowballed into heavy fatigue and other signs of inflammation, including an overnight gain of 6 lbs. A couple days after exposure, I lost control of my bladder 3 times in 2 days, a very strong sign that I have an overabundance of histamines. Then the subluxations and dislocations hit because the inflammation always affects my joints. For three days, my left collarbone refused to stay in place.  One of my lumbar vertebrae popped out for 24 hours, and both ankles collapsed.

To make matters worse, about 5 days in, I dragged myself to pelvic floor therapy hoping it would be the kick in the pants I needed, only to be confronted with a mop and bucket, the smell of bleach filling the wet hallways. This kicked things into overdrive, at least doubling the amount of time I was affected by all this. I could have just died when I walked in there and smelled that smell.

Now it’s been almost two weeks and I’m still struggling and trying to identify things around my house that might be contributing to my histamine load because I can’t seem to stop coughing or kick the fatigue. I can get the inflammation down superficially for a day or two by taking a toradol shot, but it just shoots right back up. I still can’t seem to get any real energy up and everything hurts. Even doing my pelvic floor therapy is a challenge. I have therapy again in two days, but I’m wary of leaving my house and keeping the cycle going.

To this point, I’ve avoided trying the histamine diet because I’ve had a nice long streak of doing well and haven’t had any noticeable changes in symptoms when I eat some of the things that are listed on the histamine diet. I mean, I try to avoid big triggers like bleu cheese, jalapenos and alcohol (both for POTS and MCAS), but I’ve tested tomatoes and have never seen any correlation in symptoms with them like I do when I indulge in a glass of wine. Generally speaking, I’d say that’s probably fine as it works for me, but I wonder if during a flare I shouldn’t be more careful, trying to get myself back under that magic number until I can get stabilized. I’m really still learning about mast cell and how all this craziness works. I don’t even have a diagnosis, though it’s pretty clear how much these things trigger me.

I guess if anything, this experience has caused me to reexamine the historical patterns of these unpredictable cycles and makes me realize that getting a diagnosis and some help with these problems is really going to be key for me ever finding any kind of stability in my condition, if that’s even possible. There are drugs to try that might help and if I want stability they are probably my best chance.  I’m already on zyrtec, zantac, flonase, and singulair. I also take benedryl whenever necessary, and used to have an over the counter inhaler, but can’t find one of those anymore. What I probably need is a mast cell stabilizer like cromolyn.

I’ve been putting it off forever because in part, it’s like getting autonomic testing. They make you come off all the drugs and everything that’s protecting you from all the triggers and symptoms, so they can test you for it and it’s a huge disruption to your life and what precious wellness you’ve managed to make for yourself and there’s no guarantee that they’re going to capture you in the proper state even when you do. And even if everything goes as planned and they do get the results necessary to treat you, it just doesn’t seem like there’s that much they can do to help other than give you a drug or two to try, or throw you in a mask and say, “Yep, this is your life. Good luck living it functionally.”

Maybe that’s the decades of rejection and hopelessness talking. I hope it is. But it does often appear that way as a rare disease spoonie. Diagnoses feel good because they’re validating, but they so rarely ever lead to any significant improvements that it becomes disheartening to continue to pursue them, especially in the face of white coat syndrome, which is getting a little better since I switched to the University system hospital, but still something I have to battle through every time I walk through the doors of a medical office.

I suppose if, NO, WHEN I go through testing, I will simply have to open up that bottle of mold cleaner and take a huge whiff and then I know I will definitely get the reading intended. Of course, if I do that without all my meds, I could possibly have a real anaphylactic reaction and kill myself, but at least I would have an answer, lol. Maybe I should stick with something slightly less lethal, like 15 minutes in the sun. LOL. Allergen Roulette, anyone?

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Making Low FODMAP Breakfasts Fast

I’ve always found it ironic that we tout breakfast as the most important meal of the day and yet most Americans tend to eat empty calories for breakfast. It’s easy to see why. We live in a fast paced world that values convenience and the creation and marketing of breakfast cereals, bars, and other grab and go items made from grains and sugar have taken us far from the tradition of a home cooked breakfast which included much higher levels of protein, vitamins and minerals which go much farther to fuel and satisfy us.

If you have problems processing carbohydrates, you’ve probably discovered by now a breakfast of cereal, breakfast bars or toast just isn’t going to cut it. A lot of people are left scratching their heads when it comes to figuring out how to change their breakfast routines to better accommodate their food intolerances and still manage a quick breakfast.

As someone with gastroparesis, FODMAP issues and MCAS, trying to find something new and interesting to eat sometimes feels like walking a field of landmines, but over time and much trial and error I’ve found my tried and true foods that work best for me. Of course this is the first step in any journey to attaining good gut health with gastrointestinal issues. Once you’ve managed that, then you can begin to figure out how to do it with some convenience.

If your GI problems are complex, you may have to redefine “breakfast” a little, too. If you’re allergic to or don’t like eggs, obviously moving to a traditional egg breakfast is not going to be for you. You may hate sausage or eating pork is forbidden for religious reasons. This is okay. Just because we don’t traditionally eat lamb or stew for breakfast as a society doesn’t mean you shouldn’t. Don’t let conventional “wisdom” hold you back from doing what’s necessary to achieve positive changes in your health.

If you have gastroparesis, everything you put in your mouth becomes super-important. It almost feels like the opposite, because the stomach no longer absorbs a lot of the nutrients from food. Digestion also slows as paralysis takes over, so eating becomes a lot less frequent, while nausea becomes well known. Eating sometimes feels like an exercise in tortuous futility, but it is precisely because of these reasons that people with GP should be paying very careful attention to their first meal of the day. Our food can take so long to digest that it may be the only meal we manage to eat. Even if it’s not, it may be in upwards of 8-12 hours before we can eat again and the more nutrient dense foods we can pack in, the better the chance we have of absorbing them. After all, you can’t absorb nothing and many grain products out there are nothing but empty calories.

Many of us with GP also have stomachs that lie. It will tell us we’re full if we eat 2 bites or 20. I’ve found that oftentimes I get to control this, however. If I eat 2 bites and stop, my stomach is going to signal within 5 minutes that I’m stuffed to the gills and sometimes I can’t eat again for a ridiculous amount of time (12 hours to a whole day). If I keep eating, I can usually eat a normal sized meal (not an American sized meal, a properly sized meal based on actual serving sizes) that includes a serving of meat, a serving of potatoes or rice, and a serving of vegetables; sometimes there’s even a bun or some bread in there somewhere. This isn’t always the case. Sometimes my stomach just says hell no. But on most days, so long as I’m eating what I’m supposed to and NONE of what I’m not, then if I eat my whole meal all at once, I’m fine.

For me, protein (primarily meat), white potatoes and white rice are my staples. I build every meal on at least one of these ingredients and breakfast is no exception. Yes, it takes planning, but it’s still possible for me to make my breakfast in the same amount of time as it takes to make a bowl of cereal. I have no religious restrictions and I’m quite fond of traditional breakfast foods, so I have that going for me. I do miss eating cold pizza for breakfast now, though. LOL.

How to make breakfast fast:

  • Precook your meats – I buy two packages of sausage every week and cook it up all at once. That way, I only have to throw a serving in the microwave for 45 seconds and I’m ready to go. You can do this with patties, links, bacon, chicken, just pick your meat!
  • Precook hard boiled eggs- Boil your eggs for 9 minutes and cool slightly before peeling. Place them in a storage container and use them throughout the week.
  • Precook scrambled eggs- scramble up to a dozen eggs and store them in a container in the fridge. Microwave for 30 seconds to reheat. Add some low FODMAP cheese before microwaving or top with some low FODMAP Red Tomato Salsa for a little extra kick.
  • Buy precooked ham slices and heat them in the microwave.
  • Heat tater tots in the toaster oven – If you like to have potatoes with your eggs and sausage in the morning, throw some tots in the toaster or regular oven and go on about your business until they’re done. If your other items are already pre-cooked, it only takes another minute or two. Remember to add extra salt if you’re a POTSie!
  • Have leftovers- it’s often easy to make extra of something when you’re making dinner, so why not do that and save it for your breakfast? All you have to do is reheat it and you’re ready to go.
  • Pre-make breakfast burritos – Then pop them in the microwave. If you’re short on time, wrap it in a napkin to take with you.
  • Pre-make breakfast bowls – it’s easy to scramble together some eggs with your favorite breakfast meat(s) and some tots. Put them in individual containers, toss on a little cheese and throw them in the microwave, and you have a complete breakfast ready to go in a couple of minutes.
  • Need it to go? Put some pre-cooked sausage on some bread (gluten-free or wheat depending on your needs) and wrap it in a napkin to take with you. Grab a safe piece of fruit to help round things out.
  • Whole fruit and a handful of nuts – Breakfast doesn’t have to be fancy. If you truly don’t have time to sit down and eat, grab a piece of fruit and some nuts or a slice of bread with some nut butter on it.
  • Check out some microwave breakfast cup recipes (just do a search, there are a million) and see what you can find that’s compatible with your diet. I’m not really into them personally, but there do seem to be a few options out there that might work.

If you’re going to eat cereal or grain heavy products for breakfast, try to choose ones with high protein, low FODMAP grains and try to eat more than just the one item. There are some companies coming out with low FODMAP convenience foods now, so take a look at what they have.

When you have a sensitive system and have to watch not just the types of carbohydrates that you eat, but also the amount you consume, you really can’t afford to go eating a carbohydrate heavy breakfast anymore. To me, it’s just common sense to give your body and your digestive system its best chance for a good day by providing it with the best fuel. That doesn’t mean being tied to the stove every morning though, as there are many ways to make a high protein, low FODMAP breakfast fast and easy.

Looking for Low FODMAP Recipes? Check out ours!

New Doctors, New Treatments

As I wrote in my last post, it’s taken me several months to recuperate from my attempt to work a part-time job. While I was on the right track for the last couple of years after being bedridden with undiagnosed POTS, severe migraines and other symptoms stemming from EDS, I set myself back pretty good by attempting to work only a few hours a week as an Uber driver. While I may never be suited to this kind of work given the particular challenges of these conditions, I would still like to be my healthiest self and try to achieve the most productive life possible despite my many conditions. I would also like to live as pain-free a life as possible; a tricky proposition for someone who suffers chronic pain, but can’t tolerate most pain relievers. Luckily, my recuperation is going very well, and thanks to some new strategies provided by new doctors, I feel like I’m on my way to even better health than before my setback.

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What a relief it is to have finally found a group of doctors who actually “get it” after nearly 20 years of searching for answers almost entirely alone. I finally have the correct diagnoses, doctors who have taken the time to study and understand these illnesses, and just as importantly, take the time to listen, BELIEVE and actually address my problems. What a world of difference this makes. Within the last 6-9 months, I have found a new primary care physician, headpain specialist, physical therapist and urogynecologist. Add them to my already great vascular cardiologist and I am already well on my way to better health.

My headpain specialist, who happens to be world renowned, seemed to know right off the bat exactly which drug would finally bring me peace after a decade of severe and debilitating migraines. I’ve been taking topamax since around 2010, however it’s never prevented the migraines completely. It just prevented them from being non-stop, bone-crushing, puking every hour, hide from the world under blankets kind of pain to being almost tolerable. Aside from topamax, I’ve tried approximately 10 other medications. No one ever tried verapamil or a similar calcium channel blocker, however but this doctor looked at the whole patient, my POTS, and understood that my migraines were likely vascular in nature. At 240 mg per day, my migraines went from 3-5 per week to just 1 a week. A couple of weeks ago, he upped my dosage to 360 mg, and I’ve been migraine free for 12 days, despite having dropped my topamax dosage from 75 mg to 50mg over a month ago.

Verapamil or another calcium channel blocker like it should probably be one of the first drugs tried for anyone suffering from migraines and dysautonomia of any kind. Not only does it help to regulate heart rate, but it’s been shown to be incredibly effective against vascular migraines with few to no side effects, according to this and other studies I have found. Topamax has no end of side effects that I’ve put up with for years because it was the only thing that brought me a modicum of relief. Just by decreasing my dose by 25 mg, I feel calmer, more energetic, my food tastes almost normal and I’m not suffering such severe dry mouth. I will definitely be attempting to wean myself from it soon.

I chose my new PCP in part because I was told he was being trained in how to care for Ehlers-Danlos patients by a well respected PCP in this area as well as my headpain specialist and I picked a winner. He’s already helped me a great deal by helping to properly adjust my meds, submitting a referral to a geneticist for further exploration of my EDS type, getting me connected with an excellent urogynecologist to address ongoing pelvic floor issues, and getting me started with a great physical therapist. I don’t have to argue with him, bring him research to prove I know what I’m talking about or deal with being treated like a hysterical patient when I question the safety of a drug he’d like to put me on. He also took an MRI of my lower spine to confirm that my incontinence issues were not related to my spinal deterioration, and since it would all take a while, he went ahead and prescribe me oxybutinin to help prevent anymore accidents while I was getting the help I needed. This all proved to me he’s a thorough and thoughtful practitioner.

My urogynecologist is a hoot. He’s a very good doctor, but relaxed, funny and easy to talk to, qualities I really appreciate in someone who spends a lot of time checking under the hood, so to speak. And he too seems content to treat me as a whole patient and not just a conglomeration of body parts located below my waist. He was even well versed with FODMAP issues and helped me to decide that fiber was a piece of the puzzle I had been missing in achieving better gut health and bathroom success in addition to needing pelvic floor therapy. He even had my records from my hysterectomy transferred in so he can determine exactly what they found as I never got a good explanation out of the surgeon and he agreed it could inform my future health. I’m looking forward to seeing what he has to say about it.

I’ve saved my physical therapist for last because I feel like this lady is really something special. I’m seeing her for pelvic floor therapy, but she’s truly taking a holistic approach to my therapy. Yes, she’s treating my pelvic floor condition and doing a great job of it, but she’s also working her way out from there, ensuring that what I do for my strengthening exercises are safe for my collagen depleted joints and muscles to handle, that I’m staying inside what is considered a “normal” range of motion and that I’m not doing too much. She’s also showing me how to modify exercises for good days versus bad days so that I don’t have to take days off and lose momentum (something I never contemplated, even though I’m endlessly frustrated by constant setbacks). She does this by giving me three different versions of the same exercise to do, only they have different levels of challenge. I can not only work my way up if they’re too challenging now, but do the easier ones on bad days. In addition to that, we’ve begun working on strategies to ensure I’m doing housework and lifting safely to protect my back and joints. Talk about a holistic approach! I LOVE HER! I look forward to adding some of her wisdom to my exercise posts.

Why Working Didn’t Work for This Zebra

triage-cancer-blog-return-to-workI’ve been trying to put my experience with attempting to return to part-time work into some sort of perspective. I can’t exactly say I’m sorry I did it, because I learned a few valuable things about what might suit me for work in the future and what certainly doesn’t. I also enjoyed my time driving, made a little extra money and got more comfortable with leaving the house and socializing again. It’s difficult not to harbor some small amount of regret about the experience knowing that it set my health back as it did, but having finally come out on the other side, I can honestly say that I don’t think I caused myself any permanent damage. On the contrary, I seem to be right back on track, though it took me three months to get there.

It seems astounding that working 7-15 hours a week could so thoroughly wreck me that it took three months to recover. Of course any healthy person would find such a schedule to be ridiculously easy, even if they had a house full of kids and other commitments. Having EDS and being a POTSie though, I only have so much energy and most of it should be taken up by caring for myself. When I began working, much of that care got lost to the drive for dollars and before I knew it, I began convincing myself that I could get by without cooking everything from scratch and that working was a replacement for my physical therapy and exercise.

06e45ed58c827932ebbfc732fa67c3e1-therapy-humor-art-therapyPOTS, a form of dysautonomia, also makes me highly susceptible to the effects of stress. I may not have realized it, but driving for Uber was creating a massive amount of stress for me, from constantly worrying about knowing where I was going and whether or not my car was clean to safety. I was constantly worried about having an accident. I even dreamed about it and anytime I came close to having an accident, the scenario would just replay in my mind at the most inopportune times (like when I was about to fall asleep), flooding my system with adrenaline and epinephrine.

The only thing I didn’t cheat while working was the amount of rest I needed, and yet my rest wasn’t very restful, because I was too stressed out to be calm or reach REM stage sleep because I was constantly stuck in fight or flight mode. I couldn’t manage my blood pressure or heart rate. I had hypotensive headaches and migraines. I was fatigued and anxious. My GI tract began shutting down, both from dysautonomia and constant FODMAP and allergen exposure.

Since I wasn’t keeping up with my fasciablasting, PT, cardio and strengthening, my progress was heading in the wrong direction fast. My joints were subluxing and dislocating with alarming frequency, requiring a much more frequent use of braces. My muscles were becoming sore and atrophied, and my fascia were reverting back to their painfully bunched state. I was no longer reaping the small energy payoff I was seeing from the bit of cardio I had managed previously, either. On top of that, sitting in one position in my car was causing my back to ache almost constantly, which was causing sciatica, traveling down my left hip and thigh.

When I finally threw in the towel, it took me six weeks of rest, strict nutrition and somatics just to get my autonomic system back to its usual state of not quite normal, but stable enough to achieve semi-regular REM stage sleep and regular function of the major organs. Only then could I begin addressing the ongoing problems I was still facing with a rigorous PT program, return to a regular schedule of cardio and strengthening and begin to put my life back together again.

Now that I’m three months out, I feel pretty good again, for me. So good I almost think I’m slightly ahead of where I was before I started driving for Uber, and that may well be the case, though it has a lot more to do with all I’ve accomplished in that time than the experience itself. I’ve gotten lucky with finding some great doctors and with some medication changes, a new physical therapist and other changes, I’m finally finding some relief and real change.

The question is whether that change will ever be enough to send me off to work again. At this point, I have to say no, at least not in the traditional sense. I’m just not built for traditional work. I’ll have to keep trying to find my perfect niche; one that’s flexible, low stress and somehow fits with what my body needs to keep it in this relative state of health. If that means I can never work again, so be it. For me, there appears to be a very fine line between decent health and total collapse. However, I do hope that this might change, as I do seem to keep finding things that help and maybe, just maybe, with a little luck and a lot of work, I just might get there someday.

 

Let’s Talk About Sex(ual Dysfunction in EDS), Baby

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While talking about sex is a lot more fun than talking about sexual dysfunction, it’s a topic that I think is long overdue here at the Zebra Pit. Sexual dysfunction seems to get ignored like a red-headed step child in all the myriad problems associated with having an Ehlers-Danlos body, but pelvic floor dysfunction is in no way an uncommon occurrence for women with the diagnosis. We don’t talk about it much and I don’t know that it’s even been studied, but when incontinence is a regular admission of women over 40 with EDS, you know sexual dysfunction is also a thing and I want to break the silence around this subject. Thanks to the puritanical roots that many of us hail from, sex can be a taboo subject that’s still got a lot of shame and blame, ego and stigma attached to it: However if you suffer from pelvic floor dysfunction, it’s not your fault. Luckily, there are things you can do about it once you work up the courage to get the help you need.

First let me say if you’re one of those people who think you don’t deserve joy in your life because you are disabled, get that out of your head right now. Despite dealing with chronic illness, we all deserve to have a healthy sex life. It doesn’t matter what level of ability you’ve been able to maintain, whether or not you’re able to work, or how much you can contribute to the work of your household, you deserve to be loved and touched, even if it’s just by yourself at the moment. Sex is a powerful drive for every organism that requires it for reproduction and we humans are no exception. We may have overcome some of our basest animal instincts, but sex isn’t one of them.

There are a number of ways pelvic floor dysfunction can occur and childbirth is only one of them. Due to endometriosis and polycystic ovarian syndrome, I was never able to conceive or carry a child. I have always been a very sexually active adult and enjoyed a great sex life with my husband. Despite struggling with my weight and chronic pain my entire life, I was always quite active and worked out regularly once my jobs became more cerebral than manual. Unfortunately, those things didn’t matter much when a couple of discs herniated in my low back and I had to fight for nearly two years to get the surgery I needed. Those years were just the beginning of a long downward spiral in my health. As my health waned, so did my ability to orgasm. Things just didn’t feel the same and it was just the beginning of my problems.

Whenever I actually could achieve orgasm, it was usually painful, causing abdominal cramping that could last anywhere from a few minutes to a few hours. While some people use sex as a mode of pain relief (it releases endorphins which in turn relieves pain and improves mood), I was experiencing more pain. My husband felt terrible when this happened and internalized my inability to orgasm as a failure on his part. What was once a source of joy, creativity and bonding had become a major source of stress, pain and negativity. Even as I began to feel better in other ways, my sexual dysfunction increased and our desire to keep trying hit an all time low.

I complained to doctors, but as part of my long list of ailments, these complaints always got pushed to the bottom of the list until my gynecologist decided it could be endo related and why don’t we just go ahead and opt for hysterectomy? I agreed, given that I was having periods a couple times a year that lasted 30+ days and the cramping and PMDD that came with my periods lasted a whopping two weeks each month and was killing not only me, but everyone around me because of my inability to control my anxiety-triggered rage.

While my hysterectomy helped many things, it didn’t stop the pain I was having with orgasm or increase my ability to have an orgasm. In fact, I could feel even less. I worried that it was a nerve problem, as I have my fair share of neuropathic pain and other issues stemming from my deteriorating spine, but when tested, everything checked out fine. Despite this, I started to lose control of my bladder when I coughed or sneezed, and sometimes I couldn’t make it from the car to the bathroom during long rides.

I also started having difficulty telling whether or not I needed to have a bowel movement and sometimes got caught off guard when I had diarrhea. This was where I drew the line and finally insisted that my problems be investigated thoroughly. No way was I going to end up in depends at the age of 45.

My new GP luckily took this problem as seriously as I did when I described my symptoms. After ordering an MRI to rule out my progressive spinal deterioration as the cause, he referred me to a urogynecologist. Your doctor could do the reverse. I assume this depends on your own history and the nature of the onset. The nature of my onset actually looked like pelvic floor dysfunction, but with a history of spinal deterioration, he wanted to start there, especially since my MRI’s were pre-op and over 10 years old.

A couple of visits to the Urogynocologist and a month later, I am hopeful that I’ve finally found the right person to help me and that my problem really is pelvic floor dysfunction. He signed me up for pelvic floor therapy.

While I just had my first pelvic floor therapy session a few days ago, the doctor recommended I buy benwa balls, also known as pelvic floor therapy balls, so I could get started without delay. I purchased a set on Amazon that came with an instruction manual and got started right away. After just three short weeks of performing kegels daily both with and without the benwa balls, I’ve already seen some nice improvements. While I had tried kegels on my own prior to this, I didn’t do so with any regularity and I wasn’t doing them quite right, so I wasn’t getting the results I needed.

I’m not completely sold on whether the benwa balls are necessary for successful pelvic floor therapy, but they do have their benefits. First of all, if you’re a kegel novice and not sure you’re doing them right, inserting a therapy ball will help you to locate and target the correct muscles, your pubococcygeus (PC) muscle, which stretches from the pubic bone to the coccyx (tail bone). When inserted, you can easily feel when you contract your muscles, which may help give some a focal point to concentrate on, helping to ensure you’re actually targeting the right muscles. A benwa ball can also useful as a sexual aide during foreplay. With clitoral stimulation, you will experience a great deal more sensation and will likely be much more successful at orgasming with clitoral stimulation.

The set of therapy balls I bought also came with a therapy band and an exercise booklet that was somewhat helpful. I say somewhat helpful because frankly I’m a little wary of undergoing this type of therapy alone. It’s one thing if you have a healthy pelvic floor and want to do kegels to maintain that health, but there are different types of pelvic floor dysfunction and if you haven’t been properly evaluated, you may not be doing the best exercises for your condition, which could aggravate things further. It’s not uncommon for women to hold too much tension in their PC muscle and for it to become locked, for example. In that case, one would want to concentrate on somewhat different exercises as well as on relaxation techniques to get the muscles back to their usual working order. For me, the cramping I experience is caused by spasms and cramping of the PC muscle, which requires the use of relaxation techniques to calm and I have to be careful not to over-exercise the PC muscle with my therapy.

You may also need to strengthen muscles that work in concert with the PC muscle to be successful, as well. While the booklet provides a few exercise options, they may be too advanced for some and fail to address issues for others. These are all things a qualified pelvic floor therapist evaluates and coordinates during treatment to ensure you’re building muscle without causing any damage or set backs.

Like almost anything these days, I’m sure it would be easy enough to find directions on how to do kegels and other basic pelvic floor exercises online, however your best bet is to be evaluated by a health professional to ensure there aren’t any other issues causing your sexual dysfunction and/or incontinence. Given the scope and complexity of pelvic floor dysfunction, it’s also smartest to work with a qualified therapist to ensure you’re addressing all the issues that may be contributing to your problems. There are also a number of medications the doctor can prescribe to help with incontinence while you’re working to restore normal function.

60 Day Check-in

triage-cancer-blog-return-to-workOn finishing my second month of work, I wanted to take stock of this little venture and offer an honest take of how I’m faring so far. In some ways, I’m pleasantly surprised. In others, I’m worried I’ve taken on more than I can chew. I’ve made mistakes. I’ve seen strides. It’s taking time to figure out how to balance my spoons. Overall I’m enjoying working the few hours I can manage each week and I’m bringing in decent money. But with the determination letter I just received from the Social Security Administration, I have to admit, I’m a little scared.

The first two months, I haven’t managed to work more than 55 hours, even though I can work 80 before the SSA considers it significant gainful activity. I just can’t seem to manage more than a 10-15 hour work week before I’m either out of energy or too symptomatic to continue and frankly I don’t know how I could possibly manage my life and do anymore. It’s not just that I don’t have the energy for work alone; it’s that I can’t keep up with everything I need to do to stay healthy. As it is, I’m not doing a very good job of keeping up with my physical therapy, fascia therapy, or cardio and my nutritional needs aren’t always being met, because I’m not always down for preparing everything from scratch as I should be with all of my dietary restrictions due to my mast cell and gastroparesis. And forget about housework and my other familial responsibilities. I’m lucky if I manage to keep our pill cases full, the cupboards stocked and the bills paid. It seems so minute, that 12.5 hour weekly average of hours worked, yet when it requires added recovery time, it really wreaks havoc on a life.

Then there’s the flip side, all the good things that go with working. I’m no longer so isolated and feel a strong sense of purpose and pride in putting myself out there to earn for my family. I’m bringing in an extra $450 a month on average, making our holidays brighter and paying down our ever growing medical debt. And despite how hard it can be at times to strike a balance, I am getting stronger and it does seem to be getting a little easier each week. Where I really run into trouble is when I start adding on fun stuff, like going out to dinner with friends, taking a short hike or contending with a holiday like Thanksgiving. There just isn’t any room for extras and I’m going to have to either sacrifice the fun stuff for work or work for the fun stuff because I simply haven’t found a way to stockpile enough spoons for both.

Then there’s the big mistake I made. I had planned on signing up for the ticket-to-work program back when I had thought I might be ready for full-time work. Well, since I proved pretty quickly that I was no where near ready for full-time work, I decided against it. I didn’t because going back to work part-time threw a lot of doubt on my ability to work full-time at this stage for all the reasons I’ve stated above. If 12.5 hours is so hard to maintain, how on earth would I manage a full-time job? Still, had I signed up for the ticket-to-work program, even if I wasn’t ready to begin working part-time, having the goal of going back eventually and working with them would have protected me from a medical review by social security. I should have done it and I didn’t and now the SSA is in fact putting me up for a medical review because I am working part-time.

I don’t suppose I should be too worried about it given that I still have all the medical conditions I had when I was originally ruled disabled and during my last review, not to mention my additional diagnosis or EDS, but I am in better overall health than I was back then and I fear it could be misconstrued that I am somehow “healed” or better than I really am because I am able to enjoy more time outside of my home and I don’t spend quite so many hours languishing in misery. Of course a large part of how I stay healthy and keep my pain levels low is to keep my activity levels low. I just know how the SSA works and anytime they have their gaze honed in on you is cause for concern. Will they understand that every time I do just about any physical activity I injure at least one joint if not more? Will they understand that while I’ve learned how to control my POTS pretty well, that doesn’t mean I now have boundless energy or no longer suffer from brain fog that still prevents me from doing the kind of work I did before I became ill? Will they understand that my primary form of pain relief is prevention because I’m unable to tolerate opiates and most other prescription meds and everything else does nothing more than “take the edge off” of my pain? I will have to do my best to make them understand, I suppose.

I probably sound a little down on the whole idea of attempting work right now. Perhaps that’s because I’m nursing three tendon tears right now and I’m coming off a very hectic week that’s left me exhausted, grumpy and stuck at home in PJ’s when I’d rather be out working or enjoying some holiday fun.  But that’s just it. I’d rather be working, as I know most of us would. I’m not worried that I’m wrecking my health or causing any serious damage. Even my tendon tears have nothing to do with the work I’m doing. They have more to do with lugging in groceries, the stairs that lead to my apartment and my love of 32 ounce cups (yes, I have tennis elbow from the repetitive motion of lifting my 32 ounce water off of my end table… only a potsie zebra, right?).

However, I would be remiss not to clearly state that if you do attempt to work at any level, you have to make super sure that you listen carefully and follow all the advice of your representatives and sign up for all the right programs. I made the mistake of not signing up for the ticket-to-work program thinking that it would be best to wait until I felt I was actually ready for gainful activity and here I am being reviewed. Learn from my mistakes. This is why I write. Not to show how brilliant I am. Not to show I can do disability better than anyone else. It’s precisely so you can learn from my mistakes. I may not always show you the mistakes firsthand, but you always get the benefit of my trial and error. And on this subject, I know I will feel much more optimistic once I’m better rested and this whole medical review business is behind me, assuming they feel the same way I do; that I may be somewhat better, but I’m certainly still disabled by my conditions. No one would love more to say it isn’t so than me, but I’m just not there, yet.

Could Medication Overuse Be Causing Your Headaches? Join a Study

mots_logo_bannerHeadaches are a prevalent complaint among EDSers and it seems there’s no end to the possible reasons for them; including the very medications used to treat them. In fact, the very reason no more than 11 triptans a month are prescribed to migraine patients is because taking too many triptans can actually cause headaches. This is also true of Tylenol and Motrin; take too much or take it daily and you just might end up with a headache that won’t go away.

Recently, a study that examined how best to deal with just these types of headaches came out. The primary question the researchers hoped to answer was how best to treat these headaches and users were broken into two groups:

Methods Medication-overuse headache patients were included in a prospective, outpatient study and randomized to two months’ detoxification with either a) no analgesics or acute migraine-medication (program A), or b) acute medication restricted to two days/week (program B). Detoxification was followed by preventives if indicated. Patients were followed up at 2, 6 and 12 months. Percentage reduction in headache days/month after 6 months was the primary outcome. Results We included 72 medication-overuse headache patients with a primary migraine and/or tension-type headache diagnosis. Fifty-nine completed detoxification, 58 (81%) were followed up at month 6 and 53 (74%) at month 12. At month 6, program A reduced headache days/month by 46% (95% CI 34-58) compared with 22% (95% CI 11-34) in program-B ( p = 0.005), and 70% in program A versus 42% in program B were reverted to episodic headache ( p = 0.04). Migraine-days/month were reduced by 7.2 in program A ( p < 0.001) and 3.6 in program B ( p = 0.002) after 6 months. Conclusion Both detoxification programs were very effective. Detoxification without analgesics or acute migraine-medication was the most effective program. (Complete detoxification is the most effective treatment of medication-overuse headache: A randomized controlled open-label trial).

From these results, it appears that the best way to overcome these headaches is to quit the medication causing them cold turkey and I tend to agree with this view. My husband actually went through this just last summer with Tylenol use. He was taking 2 doses every day to combat back pain, but ended up with daily headaches that just wouldn’t go away. The doctor prescribed him triptans, which helped, but of course the headaches simply kept returning until they suggested he quit the Tylernol cold turkey. It took several weeks, but sure enough, he was soon headache free.

Along these same lines, I recently agreed to become the guinea pig in another medication overuse study, this one specifically for migraine sufferers called the MOTS Trial. I have suffered migraines for years and take Topamax as a preventive, but I still experience a considerable number of migraines that I use rizatriptan to treat. It turns out I’ve been using more than I’m supposed to. So, the doctor asked me if I’d like to join the trial. I agreed. I feel a bit like a masochist, as of course I was selected for the group who has to abstain from using triptans altogether, but if I am indeed causing myself more migraines, I want to break this cycle. It’s way too soon to say if it’s having any effect, but I hope it does.

Here is the information for the study in case anyone else would like to join (there are 30 sites nationwide) or learn more about it. It does pay a small stipend for your visits and isn’t overly time consuming or anything and since it doesn’t require you to take some unknown drug, it’s a pretty safe study to be in. The doctor also gave me a completely different medication to use to treat my head pain so it’s not like you get pulled off your triptans and left to suffer. You can also go in and get adjustments to your medication as necessary if you have any problems or you may leave the study anytime you deem necessary.