Elimination diet.

Leila Raven Posted in General
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Well, I’ve decided to see if I have a gluten/wheat and/or dairy intolerance/allergy and if it’s compacting my health issues. My IBS is back, I have this other inflammatory process in my body. I have a sister who is wheat/glucose intolerant with colitis/chrones and my mother and grandmother were lactose intolerant. So those are my two most likely sources of problems if I have them. So no more dairy no more wheat. It eliminates a lot of foods. There is hidden gluten and whey in many things. So I’m pretty limited. I’ve bought some soy protein powder, and some soy milk, and some rice cereal, and other gluten/wheat/dairy free foods to replace some of my common wheat and dairy based foods. It just means giving up a lot of comfort foods.  With my diet I’ve been treating myself with the occasional breyers 100 cal ice cream treat, or 100 cal packs of salty treats… all of which contain wheat or gluten.  Going to miss them.

I just got home from a swim, was challenging today, a lot of joint pain and inflammation, but it’s been a bad few days, and after being on the couch for a couple of days, I really felt I should push it a bit. Hopefully not too much, swimming is mostly quite gentle on my joints. I did a yoga class last Thursday, was a good day pain and inflammation wise and I was happy I was able to manage it. I’m worried though that the bad Friday and Saturday I had were because I aggravated my body too much with the yoga. Only time will show if there is a pattern, and even then, I know it’s important over all for me to strengthen my body, my muscles, to support the joints. So I -have- to do -something-. Not moving is not a solution.

It’s been a bit of a challenging week.  I also found out my brother’s ex-girlfriend, who was essentially his common law wife of many years, and still after they split, remained dear to our family, passed away recently.  I will always remember her smile, which always reached her eyes with a sparkle.

That’s it for me, keeping it brief, lots more I could write, but the inflammation in my hands is slowing me down…

XO

My IBS has come out of remission

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Joy, it never rains, it pours. I’ve been having increasing problems with my bowels over the last few months with my other health issues. I was diagnosed several years ago with Irritable Bowel Syndrome. My IBS then gave me debilitating bowel cramps that would leave me in so much pain, I would become non-verbal, a ball wrapped around my innards in fetal position, in ER, making low primal noises in my throat until the injections they would give me for pain would take over, and I’d realize where I was, and what was going on around me. My sister suffers from Chron’s disease, and her and I agree, bowel pain is the worst pain we’ve ever experienced in our lives. It was worse than her childbirths, it was worth than my appendicitis. So far, thank all the powers that be, I have not had much extreme cramping with this re-flaring up of my IBS. I’m suffering from really bad constipation and bloating and gas. Oh joy. Though I rather be backed up and dependent on medications to help things empty out, and farting up a storm than dealing with those agonizing cramps.  So keeping my fingers crossed that I don’t get cramping symptoms back.

Yesterday at the Doctor he was concerned that with my poor bowel functioning I may not be totally clearning my bowel. So I was prescribed oral Fleet, and today I get to empty out, so to speak. Joy. So I have taken my oral dose of heavy duty laxative, and oodles of water. And I’m having some cramping, but manageable. I’m hoping this well help kick start a bowel regime for me that will be a bit more effective. We’ll see.

Is there anything in my body that -is- working properly right now?

Actually, thankfully my body weight has reached that magic cut off number where my hypertension is controllable by diet and I no longer have to take water pills for it, that’s something. Though it seems these days I’m adding way more medications than I’m taking off. I’ve added amitriptyline to my mix of anti-depressants because it’s known to be helpful in dealing with pain disorders as well. The most difficult side effects for me are going to be it’s constipating effects, like all of the other meds I take, and, that it makes you weight gain/hungry.

I’ve had for the last few weeks my diet on a strictly controlled 1400 calories a day, and feel I will be able to maintain that, so I’m not too worried about it, it will just be emotionally harder to do with the pills telling my brain and body I’m starving, when I’m not. On the other hand, pain for me decreasese appetite, and regardless of the medications I take I seem to have enough pain that it keeps me feeling slightly nauseous and for the most part disinterested in food.

It’s been easier to follow a really clean diet. Salmon, other seafood, fat free or very low fat lean meats, whole grains in variety, whole raw nuts, fresh fruits and vegetables, and low fat dairy products, soy cheese and tofu, edamame, and other goodies, as well as loads of nutritional supplements based on researching inflammatory  illnesses and recommended diets keeping me on track. I feel right now with my joints, the lower I can bring my weight, in a healthy steady slow process, the better. So I log my 1400 calories of perfectly balanced and supplemented diet every day, and I don’t stray.

Somehow having so many things going on with my body that I can’t control, and that are harming me, makes it easier to control the healthy diet aspect right now. I’m desperate for anything that may help and heal. I’d be popping my omega 3 and vitamin and mineral supplements right now with a healthy lunch, if it weren’t for the fact that everything I put in my body is going to be flushed clear out soon anyways, today it’s just liquids until this fleet laxative goes through, and I’ll concentrate later on a clean healthy dinner.

I feel like I’m fighting a cold/flu too, started getting sore throat and congestion yesterday, so I’m avoiding the swimming pool till those symptoms settle down. Hard to know when I get random symptoms whether they are connected to my current health problems, or are a separate illness.

Right now it’s:

Depression, for certain diagnosed and controlled, though I’m at about 70% functioning, it’s what I’m on long term disability for. My depression limits my ability to cope and handle stressors. I can manage via medication and lifestyle. I have permanent changes in mood, but more so in cognition, memory, and ability to manage tasks.

IBS, never goes away, but was in remission for many years, seems to be active again.

Reactive Arthritis/Reiter’s Syndrome, I have been diagnosed with by an internist that doesn’t seem 100% sure one moment to the next. He has also said I may have Fibromyalgia, either instead of, or as well as, the Reiter’s Syndrome. I’m going for a second opinion with a Rheumatologist to get a solid diagnoses of whatever my current severe issue really is. This is the thing that’s really affecting my whole body, causing severe pain, weakness, fatigue, and limiting me the most. However, odds are, whatever it is, I won’t be able to treat it any better or have any more resolution in health care from getting a diagnosis. I don’t know why, but somehow having a name for it, will give me some sense of control/closure around it, helping me to deal and cope, and plan, better.

That’s all from today’s Lemon report.

I’m hungry, when is this laxative going to kick in so I can have some freaking food…

eyes

Leila Raven Posted in General
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My eyes are sore… and my vision a bit blurry, my eyes feel buggy, they’re red, they ache. It’s a symptom of Reiter’s Syndrome, of reactive arthritis, and other forms of arthritis. I’m having eye inflammation. My body pain is wearing on me emotionally, but the eye symptoms scare me. I know the worst case scenarios, blindness, permanent eye damage… are unlikely. But the unknown, the possibility, and the pain, having this disease is unlikely for me to begin with, whose to say I don’t continue to win the ‘unlikely’ lottery with my illness.

I’ve made an appointment to see my family Dr. on Friday, and am going to try to get a referral to a rheumatologist,  I want a specialist on what I’m dealing with, more than the internist. I also realize that I’ve been dealing with bloating and gas and chronic constipation for many months. I had IBS in my twenties with these symptoms, but with severe bowel cramping too. I don’t have the bowel pain, but I believe my IBS is back. It seems there is some connection between IBS and many arthritic/rheumatic illnesses, so that makes sense in a way.

I feel betrayed by my body, I feel emotionally vulnerable. I’m afraid of my depression worsening in response to the stress and fear of dealing with chronic pain and fatigue.

I have had so many health ups and downs, my hysterectomy last year after finding out about this time last year that I had large rapid growing fibroids, that having followed years of severe depression, etc. I have had so many health issues, and it seems as soon as I resolve something and have almost finished healing from it, something else comes along and breaks down. Not little things, but big things. I’m tired of Dr.’s and hospitals. I’ve spent too many days, weeks, months in hospital in my life.

It’s clear… I’ve got a lemon. My body is substandard. I can’t take it back to the dealership. I have to cope, I’m human, we’re not perfect. I know I’m not alone in coping with health related issues. But when you are in your body, in pain, and it’s failing you, it’s hard not to feel isolated in that moment.  It’s hard not to feel afraid.

I was suicidal for a couple of years in the past with my depression, I’m not afraid of death, but I’m afraid of pain. I’m afraid of failure. I’m afraid of fear.  I’m afraid of hurting and not seeing a way past it. I know I need to focus on the parts of my life that are not pain, that are successful, that are joyous, that is love. But it’s hard.

I thank the powers that be, for puppies, for Wolfe, for the unconditional love my mate and my dogs surround me with every day. I’m thankful for supportive family and friends. I don’t want to let them down, which means I need to focus on the emotional strength they lend me just from being in my life. Even if I am broken, I have worth, and can find purpose in their eyes, if I can’t find it in my own eyes. My sore eyes, my eyes that are inflamed with pain, as my body attacks itself.

Dragonflies

Leila Raven Posted in General
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When you think of household dwelling insects, typically you don’t think of dragonflies.

A few days ago, a dragonfly, not a damsel fly, but a very big blue and black dragonfly flew into the house to the big front picture window. I had never seen one indoors before. I caught it, and released it outside. The next day, another dragonfly flew into the house… I caught it, and released it outdoors. Wondering if it could possibly be the same dragonfly. Then yesterday… 3 dragonflies flew into the house to the big picture window. All the dragonflies have been of the same species, almost 4 inches of big bug. I caught one and released it, but was too tired to catch the others. Unfortunately one of my pugs Luna, was not too tired, and ate the other two.

Today, so far, two dragonflies, Luna has eaten one, and is in her way lazily stalking the other one. She’s not a particularly energetic hunter, she waits till the dragonfly fatigues itself and rests on the sill, she walks up to it, sniffs it, and watches it for a while, goes away, comes back. Gives it a lick. The dragonfly flusters around on the bottom sill, and she lazily thumps a heavy pug paw on it. She may do that several times, letting it fly away, catching it. Eventually she decides with it stuck under her paw that it’s time to get down to some crunching. Now there is a small selection of dragonfly wings on my living room floor. Evidently the wings are not as flavorful as the rest of it.

As I type this, Wolfe has decided to rescue todays remaining dragonfly, and has gone to the kitchen to get something catch it in, Luna meets him half way with the dragonfly in her mouth. Thinking it’s too late, he retreats to leave her to her treat, but she opens her mouth, and the dragonfly rushes back to the big picture window. Wolfe is letting it out in the back now… but I have a feeling, there will be more.

Beautiful, comical, tragic, whimsical… not quite dog and butterfly.. pug and dragonfly.

Reiter’s Syndrome, or, Fibromyalgia.

Leila Raven Posted in General
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Well, I went to see the internist yesterday, and after answering lots of questions, and a very thorough examination, he proclaims that he knows exactly what is wrong with me. That I have a form of reactive arthritis called Reiter’s Syndrome. He goes on to tell me about Reiter’s Syndrome, that I seem to have a severe case, prescribes me anti-inflammatory medication. He assures me it is temporary and will cause no permanent damage. I then ask how long I may expect to have this, he says it’s usually a few months, I remind him I’m about 3 months of this now, and he says it will probably go away soon, or, you may have Fibromyalgia. What? knowing exactly whats wrong with me, and ‘or you may have Fibromyalgia’, do not really go together. I got sent for more blood tests, and have a follow up appointment in a month. There are no definitive diagnostic tests for Reiter’s Syndrome or Fibromyalgia.  Usually only time will tell.

Now, the doctor talked a fair bit to me about reactive arthritis and specifically Reiter’s Syndrome. He very strongly implied a mild short term condition with no lasting effects. Which was reassuring, but at the same time confusing, because my pain levels and degree of impairment from pain and weakness are severe, and honestly, I’m not a pussy. I’ve had a lifetime of serious ailments and painful ones, IBS, appendicitis, grapefruit sized uterine fibroids dying in my body, major surgeries, etc. I know pain. I have major pain, I have pain that prevents me from sleeping, that wakes me in the night. I have pain and weakness that stops me from typing more than a couple of paragraphs at a time, that sometimes means I can’t open a bottle of pop because the lid is too tight, and I have to use my arms and my legs to struggle from a seated position on the toilet. A very little reading on the internet gave me some additional info on Reiter’s and that it may go on for a year or more, it may indeed recur, and, it may cause permanent damage to my joints and bones, in severe cases.  It may progress into other forms of chronic arthritis. So… I’m far from relieved.

All I have is a diagnosis that means you may be okay, sometime in the future.. or you may not. You may end up with complications, possibly even deformities, but it’s unlikely. Mind you, it’s unlikely for a woman to develop this particular illness to begin with, even more unlikely that it’s of the kind that effects the whole body.. the kind that unlikely or not, is more likely to lead to permanent chronic problems. Am I paranoid? No, I’m just scared. A lot of pain will do that to you, any possibility that you may have to put up with it long term is going to be a fear. Honestly, I am afraid of how I will cope. I’m disabled by the level of pain and weakness I have. Of course I’m upset. I may have to live the rest of my life like this, it’s a possibility. It may go away, and it may also get worse. It may be months still, potentially a year, maybe more, before I even have a definitive diagnosis, rather than the ‘or’ diagnosis.

Then I feel guilty, weird isn’t it. Guilty for being ill?. Like it’s my fault, a cop-out. What about all those other people with chronic illness, with more severe disabilities or disorders, with worse pain. Look how some others cope and function. People with children, people in worse situations, and here I am whining, feeling sorry for myself, wanting to give up, scared. My body hurts so much, after a couple of heavy pain killers, a muscle relaxant, and the anti-inflammatory, that I can’t help tear up time to time, that moving is challenging, that typing this hurts, yet I feel guilty. I feel like I’ve let myself down, my husband down, my family down, my friends down, my community down.

Pain messes with your head. Pain that is with you for three months messes with you… what does pain that is with you three years do?… Am I a strong enough person to find out? Do I have a choice?. No, I just have to have patience… things may get better, things may get worse, things may stay the same. Life goes on regardless of what is going to happen in my body, and I have to live it as best I can.

I can’t write anymore. I don’t want to cry about it, but right now… it’s just what it is. Tears regardless.

Pain

Leila Raven Posted in General
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Yesterday evening as I was swimming away the soreness in my body in the community pool, I was reflecting on my life, my present, my past, and what my future might bring. How having pain is changing my life, how my life may change if my pain disorder is diagnosed as a chronic condition. I find myself very focused on pain, what pain is, means, how it effects me, how it colours my world, my choices. The roles pain has played in my life.

I think in childhood, like many of us, a large part of my life was spent focusing on how to avoid pain. I was a fearful anxious child as well as a bright vibrant and creative one. I spent a lot of my time trying to avoid pain in my early years, pains of spankings, pain around fear of pain, pain of upsetting parents or friends. Being unpopular the pain of rejection or bullying, verbal or physical.  Like many children, I grew up with a lot of fear around pain? Will it hurt? Fear of the vaccination shot, fear of the skinned knee, tears over stitches and blood tests. Afraid of falling and hurting myself getting on a bicycle to learn how to ride. Fear of the dark.. fear is definitely linked with pain, perhaps it’s a type of pain. The fears were all about the potential ‘hurt’ that might happen. I spent maybe the first 13-15 years of my life with a lot of fear and a lot of pain. Early severe mono, and having my appendix out, included in that early pain and fear phase.

Somewhere around 14-15, my focus on pain and fear started to change. I started to take control of it. I started reading books filled with pain, I took a liking to Russian literature, philosophy, erotica, and horror stories. I read banned works of the Marquis de Sade that my boyfriend had copies of. I began to ‘play’ with pain. Pain became linked with my sexuality. I loved biting, and nails, I loved roughness. I masturbated grinding my butt cheeks into hairbrushes or the tines of forks laying underneath me. I realized pain, controlled, and fear, controlled, was not only not a bad thing, but something delicious. Having clothes torn of in a public park, underage, sirens in the background. We’re they coming for him? Building my heat. I was later drawn to the kink/BDSM community when I discovered they existed. This was shortly after the internet happened. Before the internet, I didn’t know there was a kink community local to me.   All my bdsm and kink activities were limited to private play, now I had an interested partner, as well as a community to explore it with him. Wolfe and I started going to events. I knew I liked to switch, and be both top and bottom, sub and dom, but entering into this community, chose to go in to learn via a submissive role. We started with the early “Mack” ( after Mack McKinnon) parties in Vancouver.  In public I bottomed, in private I did both. As the years progressed, I topped more and bottomed less. I started to do professional domination partnering with friends of mine that did pro work, and loved it. I would occasionally see my own client one on one. It was something I did for the love of it, more than the money. I certainly did much more lifestyle play than professional play. I spent many years doing occasional ‘part-time’ professional domination. I never had a formal dungeon space, or ran ads, word of mouth, and the right connection, would bring me the occasional client that I shared special interests with. I had many offers for paid sessions that I would turn down, preferring to keep clients I had chemistry with, common play passions, and knew I would enjoy as much as any lifestyle play. Pain during this stage of my life, has always been about playing with pain, controlling pain, enjoying pain.  Owning pain. Loving pain. I loved receiving controlled consensual pain, I loved giving controlled consensual pain. Fear of pain was phenomenally reduced. Needles, shots, blood being drawn, stitches, surgery, scraped knees, no fear any more, the pain fears of childhood washed away in playing with pain. Knowing all those little pains were easy pains for me to handle.

About three months ago, I started having body pain, unexplained aches and pains, like a very bad flu, like a full body workout post workout pain. Pain in muscles I’d never had pain in. Fatigue with the pain. Muscle weakness with the pain. Since these symptoms started with a bladder infection. I assumed the infection was really serious, and it was my body fighting the infection, and being worn down by the extra heavy course, and then second course of antibiotics I had to take to kick the infection. But then, the infection was gone, but all the pain, weakness, and fatigue.. continued. That and upset bowels, occasional urinary discomforts, weird things going on in my body. Hard to concentrate. tired all the time. Sometimes the muscles too weak that I can’t open a pill bottle or the tab of a pop can or the lid of a jar. The teapot to heavy to pour. The degree of pain, weakness, fatigue, would fluctuate.  I started to get tested for all kinds of things, Dr.’s visits, screening tests, loads of blood tests, urine tests, x-rays, ultra-sound, nuclear medicine tests. Still no diagnosis, 3 months later. Most of the possible more minor and temporary possibilities have been ruled out. What’s left is some kind of auto-immune disease, and/or fibromyalgia.  I go see the internist on Wednesday, and hopefully working with him, will be able to find out what kind of ‘pain disorder’ I’m dealing with here. Since pain, is my predominant symptom.

So now I wonder, if the next phase of my life, is going to be all about learning how to live with pain, unconsensual uncontrollable pain.  I can control the pain partially with medication, but it’s constantly my companion to some degree. I can also control it somewhat via limiting my actions, not pushing my body/mind into further fatigue or weakness. I’ve learned so far, that it’s not steady, I have worse times and better times, and when the pain and weakness is less, it’s good to take advantage of that and do gentle controlled exercise like swimming to build up strength for when I have so much pain and weakness that I can do nothing at all. So far my life has been deeply motivated by, entwined with, pain, in different ways. So is everyone’s to some degree or another. But as a kinkster, I had many many years of playing with ‘good’ pain.  Now I’m negotiating a brand new relationship with pain. Chronic pain.  Fear comes back with it. Do I have the ability, the inner strength, to deal with a potentially chronic pain condition?  How will I cope, continue to cope, if my situation is permanent… what if it is progressive? So far, no diagnosis doesn’t make it easy to predict my future with pain. But after three months of this now, I am facing the very real possibility I have entered a new relationship with pain that may be a life-long one.  I’m going to need to learn how to navigate life through it…

Wish me luck.

Organ donation

Leila Raven Posted in General
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In Canada today, thousands of people are waiting for organs, waiting to see if they will live or die. Others have lost or are losing sight, only needing corneas to restore vision or prevent blindness. Collectively, we have the power to save lives, save a sense like someones vision. Without costing us. You may or may not contribute monetarily to charities. There is something you can do, without costing you anything, that can save lives, restore vision, you can register to donate your organs. It may be years before this final gift you give to the world happens, but think about it. We all wonder whether our individual lives will have an impact, positive, on the world around us. Your life, in death, may save the life of another. How much more of a gift can you give than the gift of life? Many of us believe in organ donation, but have not registered as organ donors. Make sure you are registered for organ donation.

If you are a BC resident, call 1-800-663-6189 and register for organ donation now. Where ever you live, take the time to google your location and organ donation registration to find out where and how you can ensure your final contribution to the world is made. You can change lives. Make the step, and encourage others to do so if you haven’t allready.

Pounds and Puppies.

Leila Raven Posted in General
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Well, I’ve gotten a puppy, yes, another dog. We tried a fourth dog, a rescue older un-neutered male on impulse earlier this summer, and he wasn’t a good fit, that, and some neighbours turned us in for being extra barky, and the city came and wagged their finger at us for having 4 dogs. Prince was a sweet little rat terrier boy, and it broke my heart to re-home him. Why a second stab at a fourth dog? Well, a few reasons, one, we’ve decided that we’d like to breed Luna, and after much thought, decided we’d like to have our own stud, and if we enjoy doing the puppy thing, maybe even get a second female later on. Multiple dogs means kennel license, or some such, and since we’re going to be moving most likely next year to the Island we’ll look for a place we can do that. I would have waited a bit, but the stud of my dreams came available at an amazing price, and I didn’t want to pass up the opportunity. I didn’t want to breed Luna to another pug, because the head size and shape means it’s often a difficult delivery, requiring c-section and putting the bitch at risk. Luna is a good healthy wide girl, but still, I decided after a lot of research, I wanted to go along the line of the hybrid chug – chihuahua crossed with pug. Smaller pups, smaller heads, safer for Luna. Now, I’m uber fond of brindle. I’m a brindle fan. So ideally I wanted a largish brindle chihuahua stud. Lo, I come across an ad for two chipins, a chihuahua cross minpin, meaning they are going to be a decent size, around 10lbs, two brindle boys.  We went to see them, and wow, what amazingly sweet little guys.  So, home we came with our little brindle chipin puppy, Max.

Max

So, we’re quadruple dogged now, and he is an amazing little guy. Very well behaved, mellow, intelligent, cuddly, quiet little love. I tell you, puppies are good medicine, he brings joy and warmth to my heart, and the other three dogs all love him. He fits in really well into the mix, and I think with his mellow subby nature, is going to mesh well with the ‘pack’.

On another note, the pounds are coming off, it’s tomorrow will be a week, and the scale this morning has given me a loss of 3.5lbs for the 6 days, I expect about the same tomorrow morning, or a slight drop. I got to the pool a couple of times this week, and have found that even though on land I can barely move much of the time due to pain and muscle fatigue, in the water, I can go and go. So first pool workout I swam for an hour, leisurely laps, and todays, I swam for an hour and 45 minutes of leisurely laps (I do breast stroke but keep my head above water the whole time, or kickboard), and then half an hour of an aqua aerobics class afterwards. It’s nice to -do- something. It’s amazing though that I feel the difference and increase in discomfort right away getting out of the pool, and the ease getting in, makes me want to remain aquatic! The hot tub and the sauna, so good on my sore body too.  The fact that ‘weightlessness’ is easing my pain, makes me think that weight loss is probably a good idea in terms of dealing with my health issues too, a decrease in pain from losing some weight would be nice. I’m very focused on keeping really good nutrition while I’m losing, I don’t want to compromise my health in any way, so it’s been good supplementation and good basic healthy foods, making sure I have a really clean diet, and enough of all my macro and micro nutrients.

I’ve been looking at a local organic food delivery service, and very tempted to take it even further, and clean up my diet even more, the problem is our budget is really tight right now, and increasing the cost of groceries to go organic is a tough sell. I’m tempted to go organic diet with everything, veggies and meat, etc. It’s readily available via Ladybug Organics and they deliver not only produce, but a full grocery selection of quality healthy organic foods.  I could make a switch over to a totally organic diet via their grocery service very easily.  Just one more reason why we need to downsize our bills, like mortgage, hence the move, so we can do things like this to improve the quality of life.  I’m a firm believer if it’s not broke don’t fix it, before, I was healthy, my diet was healthy, and it wasn’t as healthy as it could be, but I felt it was ‘good enough’, but now.. it is broke, I’m not healthy, and even though diet likely can’t ‘cure’ what is wrong with me, I believe in altering all the factors I can to give me the best possible outlook.

Believe me, pain, is a -substantial- motivator. I understand how people can get sucked into quack cures when they have incurable situations. You’re willing to give lots of things a try in order to make a positive change.

I have a feeling I may be exercising in the pool a lot now, because the pain melts away in the water.

Means one of the concerns with relocating, is needing to find a home that’s not too far away from a community pool. I definitely need to be able to exercise.

Okay, fingers and arms are killing me from the typing, I can swim for almost 2 hours, but I tell you, typing is evil in making my arms and hands ache. I’m out, time to snuggle with a sleepy puppy.