I am SOOOOO behind on the challenge!!! I feel like such a slacker. I had planned on catching up with them yesterday and today (after the holiday stuff), however, my appointment at the pain clinic ended up being a 5 HOUR WAIT!!! I kid you not! The doctor was running SO FAR behind and was insisting on seeing everyone one-on-one to check-in with them. Usually I just see a Physicians Assistant to get refills and talk about what’s working and what’s not working. I don’t know why, but he decided to do it all in one day.
I met a young woman at my last appointment and it turns out she lives in the same town and has offered to take me too appointment’s if we schedule them at the same time. That way my poor grandparents and sister don’t have to drive 45min to get to my house and take me for an appointment (and thank goodness they didn’t have to take me yesterday!). We get there just in time for our appointment and all nervous because we had been running late and the parking lot was packed and a complete mess. Cars were parked in “non-spots” and another woman was waiting to pick up her husband who was just STANDING outside of the car while the rest of us were trying to get around them. Just STANDING there NOT getting into the car. Then people started yelling and honking, ugh… I like to avoid confrontation and just be nice to people but even I was getting really angry. We make it up there and there were people in camping chairs in the hallway outside of the office. No Joke! The waiting room was packed and hot and we are waiting in line to check in, then we went back out to the hallway and someone offered me their chair, but then we decided to wait on the first floor where the couches were and they would call us. The building is a big open building and you can see onto the first floor. I tried getting up and got really dizzy, my legs were shaking so badly I couldn’t move, I was having trouble focusing my eyes, and was going into a full autonomic crash of sorts. The nurse let us go into the back where there was an alcove with a gurney that wasn’t being used so that I could rest and cool down and get something to drink and eat. Every time I tried getting up, I lost strength in my legs. It was horrible. Eventually I did start to feel better and we went to wait downstairs. Thank goodness for those couches! I don’t know how else I would have made it through! Thank goodness my friend was prepared with waters, powerade, granola bars, PB crackers, etc! I just hope that it’s not this crazy next time. Sigh!
So, needless to say, by the time I got home I just felt like going to bed. I was so tired and so sore and achy all I wanted to do was put on my pj’s and go to sleep. Today, I still felt really tired and so, so sore. Tomorrow is going to be another busy day at a friend’s cookout.
I do plan on getting these done! I did work on them! in the meantime go over to Charis’s blog for the Prompts!
My friend, Charis, over at Full Frontal Ostomy has created the “30 Day Self-Esteem Challenge”. It pretty much speaks for itself, however, the idea is to reflect on our less desirable personal traits that may have aided us in dealing with chronic illnesses and how to turn them into something positive.
When living with any type of chronic illness it’s very easy to become overwhelmed, depressed, unhappy with our bodies, self-conscious about things, etc. This Challenge created to help pull ourselves out of getting stuck in these feelings. To gain some insight on how we can find better ways to cope with bad news, deal with any setbacks that may occur with our health in a good way, etc.
Here is the Day One prompt:
The prompt has several facets. First, acknowledge your less desirable personal qualities. Second, reflect on how these qualities may have aided in your fight against IBD (no need to get too deep into this yet). And third, begin to consider how these qualities can be used to help raise your self-esteem and allow you to regain control of your life – or at the very least, learn how to control your reactions to the bad things that may come your way. This may not make sense to you right now, but bear with me. I believe this will be a journey worth taking.
Charis is focusing on IBD (Irritable Bowel Disease) but I really feel that this can be geared toward any Chronic Illness and decided that I will join her on this Challenge.
My less desirable traits are that I am stubborn, can be moody, often say things that come out wrong or sounding rude, impatient, have a tendency to go on relentlessly about a specific topic, overly analytical, and I’m sure there are many more.
My stubbornness plays an important role as it will not let me give up on myself or the hope that better treatment options for my illness are out there or will be out there in the future. My impatience can often be a good thing in aiding motivation when I really don’t want to do something I need to do in order to stay as well as I can be. For instance, I really hate taking all the medications and supplements that I need in order to feel as good as I can. Instead of hemming and hawing over it, I just get it over with and move on to the next thing. My tendency to go on and on about certain topics can be really beneficial when it comes to advocating for awareness of my conditions and the fact that there are no cures and no real treatment besides pain/symptom management. By spreading information that Ehlers Danlos Syndrome is so much more than being flexible or having stretchy skin, that Autonomic Dysfunction is so much more than getting dizzy from time to time, etc. Being overly analytical has allowed me to really learn and understand my conditions, to ask questions when I don’t fully understand something, to speak up when I am uncomfortable about a particular treatment method or medication, etc.
I sort of combined part two and three of this exercise together, but you get the point. As far as some of the other traits like moodiness and tact, I will have to come up with ways to remind myself to think about what I am saying before blurting it out, which I have started doing anyway as I used to be REALLY bad about this.
I have a good feeling about this Challenge in that it will be really insightful and hopefully help me gain some self-esteem and feel better about myself.
Erin from the blog A Dress A Day wrote a really amazing blog post. So amazing that I have to share it with you all. As someone with a chronic illness, I’ve often felt frumpy, ugly, unattractive, etc., at least once per day. Because of living in chronic pain, comfort is a major component that goes into the decision making of what to wear. Why should we have to give up comfort to feel pretty? Why should we feel that we aren’t “pretty enough” to wear a certain dress or outfit? These are the major points of her blog post and I urge you to read it!
Today I would like to share a story written by a young man who lost his fiancee to complications of Ehlers Danlos Syndrome.
”The Jade Dragon” by Matthew Curran, written in honor of his fiancee, Amy Mak, who passed away from EDS in 2008. It made me cry.
There is a jade dragon pendant I wear constantly because of a broken promise. Usually promises are made regarding difficult or important things that mean a lot to somebody. They are also made in regards to trivial matters, but when those promises are broken they can often be forgiven and forgotten. The important matters are different, more vital to honor, and even when they are easy to carry out, the consequences of breaking them are massive. In fact, the easier a promise is to keep, the greater the consequences to one’s conscious for breaking it.
The jade dragon was a sort of gift from my fiancee, Amy, for protection. I was flying to Pennsylvania for a week, and it was the first time we’d been apart in nearly two years, except for a few nights when she was in the hospital and I slept at home for whatever reason. The carved dragon hangs on a faded red string tied in a stout knot, keeping the circumference too short to fit back over my head. Well, it is now at least.
Before she got in my little Toyota to go stay at her parent’s house for the week I would be away, she stopped and pulled the jade necklace from her purse. “Come here,” she said, and when I complied she reached up, standing on her tip-toes, and began to yank the tight string over my head, pulling down hard. “Don’t take that off until you’re back here!” she said in her stern voice, which was incredibly convincing, despite coming from a sub-five-foot-tall-in-high-heels Chinese-American woman. She accomplished this with her unique way of making a sentence into a single word; what she actually said was “DONTAKETHATOFFUNTILYOUREBACKHERE!” Naturally, I promised to wear it at all times until I returned, on the usual conditions of torture and dismemberment.
I flew out of San Francisco to Philadelphia and stayed with my parents for a week. I worried incessantly, even though Amy was supposedly safe with her parents, they hadn’t seen the worst of her condition which had developed after she had gone away to college; they didn’t know what to expect when she got really sick. Amy lived with a genetic condition called Ehlers-Danlos Syndrome, and it periodically made her life a living hell. EDS, as it’s known for short, directly affects the body’s collagen production, which reduces the strength of connective tissues responsible for things like your joints staying tight, and your skin not stretching like a rubber band. It can also cause curvature of the spine, vision degeneration, slow wound healing, and deadly vascular problems. In Amy’s case, all of these effects were present, along with the gratuitous addition of excruciating pain and nausea on a regular basis, usually described as an abdominal migraine.
Ehlers-Danlos is such a little-known and less understood disease that only a handful of doctors in the world know anything practical about it. Hospital admits were difficult every time. I had to be Amy’s eyes, ears, and voice, as well as her guardian angel and personal EDS expert in the emergency rooms and in-patient floors. By the time I knew she was having an attack bad enough to be admitted, it was too late to ask her opinion. Pain has interesting and varied effects on people, but of all the doctors, nurses, 9-1-1 operators, and ambulance crews I’ve explained Amy’s behavior to, none could understand it. After too many continuous hours of pain her consciousness would retreat, hide away somewhere inside, leaving only a primal creature on the outside, incapable of language and persuasion, until some morphine or sedatives could be injected. The understanding of pain is a huge subject in itself, but the basic problem is that bad pain is always unbelievably bad, because if we always remembered how it felt we would go insane; the problem is that your pain is unbelievable to anyone else because they cannot feel it with you. I pushed the boundaries of empathy with Amy, I watched over her constantly, I cleaned up vomit, I went without sleep, but even I could never share her pain, as much as I wanted to.
Fortunately my week away was relatively uneventful. Except for a few tears of loneliness, both Amy and I were fine. That is until I took the jade necklace off to sleep and hung it on the bedside lamp, where I forgot all about it. It’s certainly not that I wanted to break my promise to wear it, but just like most people take for granted they will wake up in the morning, I took for granted that I would remember the necklace and Amy would never know I’d removed it. Her dragon necklace remained hanging on the lamp for the entire week.
I finally remembered the necklace when I got on the plane back to California. At that point there was nothing I could do, I was going to disappoint the person I cared most about. I called my mom when the plane landed and asked her to ship it back to me right away. With a few days to wait for it to arrive by mail, I had to hope that Amy would be so happy to see me that she wouldn’t think about the dragon necklace for at least that long.
“Where is the necklace I gave you?” she asked me immediately when we got home. I had to confess that I’d disobeyed and taken it off to sleep, being unaccustomed to having anything on my neck. “This is why I told you not to take it off! It was supposed to protect you during your flights.” In Chinese folklore the dragon is a symbol of good luck, and holds power over stormy weather, so having me wear it was Amy’s way of trying to take care of me.
Amy was a very intelligent and educated woman but I think she held onto some ancient beliefs, in a semi-serious way, to stay connected to her parents and their culture. She was born in Hong Kong, but brought to the States as a young child to gain access to more advanced medical treatments. Though her parents were well versed in Eastern medicine, they still recognized the need for high-tech surgical procedures to save her life. Despite her pain, Amy was constantly grateful for this, and took pleasure in mentioning that if she had lived in China she would have been dead before the age of seven. By the time she was 27 years old she had been through eighteen spinal surgeries involving fusions with titanium rods to correct her scoliosis. I often lovingly referred to her as “my bionic woman” because of this.
The necklace was an important symbol for Amy, though she would never explicitly say so. She wanted me to have something of hers with me when I was far away from her, so we would still be connected. Having spent the previous two years as her caregiver, her friend, her lover, her driver and nurse and partner in all ways, I looked at us being together as a simple, undeniable, eternal truth. She talked about marriage and children from time to time, and I would always protest and ask why it was necessary. “Why, if you know I’ll never leave you, do we need to have a wedding?”
Romance was a difficult concept in a relationship made so intense by pain and life-or-death struggles, so there never was a big proposal moment for Amy and I. Without ever really noticing the change, we gradually started talking about our future in terms of before and after we got married. It just seemed right. The moment this idea finally solidified in my head is one I will remember more vividly than any other in my past or future. I was leaving for work after a difficult night spent next to Amy’s hospital bed, and I looked into her anxious brown eyes and said “Bye honey. I love you.” That was all. I didn’t have to say it, because we both knew it was true, but it was important. In that moment, seeing her look back at me, whispering “I love you too,” was when I realized I was meant to spend my life with her; I couldn’t picture a life without her. About five hours later she was in the intensive care unit, in a coma with a ruptured aorta. I had missed all the calls from the hospital until nearly lunch-time. I ran to the ICU with a gut full of dread. She died the very second I got there.
* * *
The day that Amy died, I found the jade dragon again and put it on. Threaded onto a simple red string and tied in a knot, it was never meant to be a permanent fixture; it wasn’t meant to last in the way my life with Amy was supposed to. In the three years since she passed away I’ve always had the jade dragon next to my skin, so I can stay attached to her in some small way, even as life moves on for me, taking me further from the world we built with each other.
Connections can form between people that even death cannot sever. I’ve never been religious (despite my mother’s best efforts), but to paraphrase The Bard, there is more in heaven and earth than is dreamt of in your philosophy. The weekend of Amy’s funeral coincided with the peak of the Perseid meteor shower at the beginning of August. Consumed with grief as I was, I remained oblivious to this fact until some time later. My first night home after the funeral, Amy appeared in my dream. She floated in a peculiar way which felt natural at the time. She took my hand, and dragged my incorporeal being out of bed, directly through the roof, then settled back onto the shingles to look at the sky. We sat there together for hours simply holding each other, watching the shooting stars, pointing out big ones to each other from time to time. All my feelings of loss and heartbreak were for a little while overcome with an incredible sense of peace. When she said she had to go I wasn’t surprised, because I knew I had lost her a week ago, but she said she would return and I felt comforted.
Almost a year after Amy’s funeral, on the morning of her 28th birthday, I woke from a dream about her to find the jade necklace had neatly tied itself a new knot, just above the pendant. Until this point the string had been just loose enough to be removed from my head, but now it was impossible. As tempted as I was to undo the knot to see how it had been made, I felt like it would be a desecration. I think the new knot in the necklace is her way of saying “Don’t forget this time! Or I’ll kill you in your sleep!” That was always an empty threat, but the way she would say it carried all the love in the world.
There is a special kind of bond between people which is born from suffering. Amy suffered more than I thought was possible, and I was there to see it, or at least as much as I could stand. There is another type of bond, born from guilt, that goes along with the bonds of suffering. Amy and I did a lot for each other, and not just because we had no one else, it was because we loved each other so completely it was like we were two halves of the same person. Though this kind of familiarity can quickly decay into taking the other half for granted when times are rough. Of all the things I regret in myself, in my entire life, this is the worst.
I will always see Amy again, I know this as a fact. She continues to visit my dreams from time to time, and whether this is my own imagination or something more doesn’t matter at all to me. I continue to wear her jade dragon, because I promised I would never leave her, and when I see her in my dreams she is peaceful and happy because I’ve kept this promise. I’ve moved on in life, made new plans, tried to become a better person. In every aspect of life I’ve used the jade dragon as a reminder of Amy’s constant strength, and her unwillingness to give up on a life filled with pain as long as a drop of love still exists. Through the dragon I remember the best and worst things possible in life, and Amy’s spirit which never quit, even when her body did.
I just recently stumbled upon Single Dad Laughing, a fantastic blog written by Dan Pearse. The link will open up to a post I just read (from 2010, currently being featured) about people and their pain and their need to compare their pain with the pain of others. It’s really a great post and urge you all to read it! I’ve had people tell me both that their pain is worse, or that their pain couldn’t be as bad as mine.
As someone who lives with a very rare connective tissue disease that causes many painful dislocates and partial dislocations on a daily basis (among other things) I deal with a lot of pain. Thankfully to a good pain regimen, I’m not in as much pain as I was before it. The most pain I’ve dealt with was when I had wide spread nerve pain. It felt like my whole body had the worst burns of my life and then being rubbed over with sand paper. I just laid in bed crying because moving hurt, cold hurt, hot hurt, clothes hurt, anything touching my skin hurt. Now I have some joint pain, some nerve pain in my limbs and feet, sometimes awful itchy due to nerve issues, and of course the pain of the dislocations, but it decent even compare to that time before the meds.
Having said that, I make sure I tell people this one thing, that their pain is their pain. I don’t know what it feels like, only they do. I only know what I’ve felt. Sure compared to most, I’d say I have a pretty high tolerance for me, but that doesn’t mean the other person isn’t experiencing the worst pain they’ve ever felt. I get both sides of the spectrum. Some people will tell me that their pain can’t be anything like what I deal with. Well, in a way, that’s true if they’ve never experienced nerve pain or dislocated joints or arthritis. But I’ve also only ever broken 2 bones in my lifetime. I don’t remember the first, and the last two were a bone in my hand and a bone in my foot, and I walked on that foot for a week before they found the break. I was 11, so it couldn’t have been that bad. Sure it hurt, but I was still able to walk. Then I also get the people where who say I mustn’t be in that kind of pain all the time… no one can live in that kind of pain like that!!! Well, yea they can, and they do. I know a lot of people who, in fact, DO live like that. My mother and I are two of them and I’ve met a lot of people with the same illness or similar illnesses who do. It’s all a matter of perspective, really.
When I first got really sick with the EDS and all that came with it, I was still in therapy trying to recover from Anorexia. I had managed to stay at a healthy weight for a few years and felt really good about it, both mentally and physically. Healthwise, I was still struggling and trying to figure out how to go about my care. I’ve had lots of ups and downs since then, along with a lot of trial and error with different medications and some that came with some greatly unwanted side effects. The most unwanted… weight gain. First it was only 5-10lbs and ok, I could deal with that. Then I started to develop severe GI issues and slowly started cutting things out of my diet, which would make most people think that I’d lose some weight. However, when those foods consist of vegetables, most fruits, and other forms of fiber and I’m left with basically simple starches it’s easy to put on the pounds, clearly.
Last summer, I was able to get back to walking and was up to about a mile a day, then all of a sudden I was hit with a wave of fatigue that I haven’t been able to shake. Every few days I try to do some small exercises, nothing to crazy as I know my body has it’s many limits. The problem with it is that the next day I’m completely useless. It doesn’t seem to matter how much or how little I seem to do, I’m completely useless, to the point where I am literally FIGHTING to stay awake and keep my eyes open. It’s not just with exercise, last weekend N and I went out to dinner with some friends and it was about a 1.5 hour car ride each way. The next day I was seriously struggling to stay awake.
I see my metabolic doctor on wednesday and am going to ask him about ideas to help combat this fatigue issue and about seeing a nutritionist. I need to figure something out because I’ve noticed a big difference in my pain levels since putting on this extra weight. That, and I want to feel comfortable in my clothes again and feel good about myself in general.
It certainly has been a long time since I’ve made any sort of update on here. There’s been so much going on and it can be overwhelming. One of my last posts discussed my GI system and what is going on with it. I sort of left things hanging, didn’t I?
Well, there is a bit of a reason for it. The surgeon I was seeing at the time had one of the worst bedside manners I have ever encountered and often left his office in tears. I did end up seeking out a second opinion and here’s were I’m at. My GI symptoms have been getting worse. The pain in my abdomen used to only come after I’ve eaten, now it’s there all the time and will get worse when I eat and randomly throughout the day. Sometimes nighttime can be the worst. The bloating is incredible and I can go from having my jeans be big in the morning to not being able to get them closed at night. Close have become so physically uncomfortable that I prefer to stay in pajamas. My diet sucks. I’m still on soft foods and mostly liquids. There are very few things that I can eat that give me minimal discomfort. I’m nauseous a good portion of the time and don’t even want to think about food. I need nutrition, though. So here’s my day in food for the most part. In the morning I have something like a Gerber’s Grabber. Yep, that’s right. Baby food. It’s the only way I can get fruit in. Hey, when you’re this sick you have to get creative and improvise. So, that’s breakfast. Mid-day, I make my own protein milkshake that actually comes out quite yummy! I mix a cup of almond milk, with a scoop of whey protein (chocolate), 1-2 tbsp of cocoa, 1tsp of something called “veggie magma” which is a powder and pretty much how I get any veggies, 1 packet of splenda, a banana, and a bunch of ice. Toss it in a blender and it gets really frothy and velvety. I let it go a bit longer than it needs to because it builds up in volume almost an extra 1/3 of what’s in there! For dinner, I will usually have a gluten-free english muffin with almond butter and some nutella (there are something I refuse to give up). I used to be able to tolerate a 1/2 cup of low fat ice cream, but now I’m having too much pain for even that. I may give sorbet or coconut milk ice cream another try. During the day I’ll have a snack of a rice cake with some almond butter, or a yogurt. I just bought a giant bag of Dum Dums to have something for flavor throughout the day. Depending on how I am feeling each day there is some variation and I may be feeling a little more adventurous.
In a few weeks, I am seeing one of the countries’ top GI motility specialists. I have been waiting for this appointment for a long time. I’ve had a few tests* that he ordered already and hopefully they will give us the answers we need to figure out what to do next. Whether it means surgery and what kind of surgery, or if there is an alternative that previous doctors haven’t thought about. All I know is that I can’t keep going on like this.
See, last summer I was actually doing really well! I had managed to get my butt out of the wheelchair and started walking. Part of that had to do with getting adequate pain control. I started of really small and by September I was walking close to a mile! I felt amazing! I was still struggling with my GI system, but this gave me something to focus on. It was short lived, sadly, because as the pain kept getting worse and I was getting about the same amount of nutrition as I am now so my energy started to drain. My limbs feel heavy, I’m so tired all the time, I’m not sleeping well because of the amount of pain I’m in whether it be from general joint/EDS pain from subluxations and dislocations or from my abdomen, and my hair is falling out again. Each day I pull out fistfuls of hair. Thank goodness I have a lot of hair, but it’s still very upsetting. The last time my hair was falling out was when I struggled with Anorexia.
*One of the tests is actually really cool. It’s called a Smart Pill Study and the REALLY cool thing is that the motility specialist I am seeing is one of the researchers associated with The Smart Pill!! Basically, the Smart Pill measures the transit time of the entire GI tract. You swallow an electronic capsule and it transmits information to a recorder that you carry with you and hit a button every time you eat, use the bathroom, etc., then bring the recorder back after 5 days and the dr will download and review the information.