Two years ago I was probably in the same place as I am now, if anything I probably had more physical capabilities back then with my walking and standing capability. But two years ago all I saw was how little I could do , how held back I was , how much I was missing. All I saw were my limitations. Coming from the extreme place I came from, I am now in complete joy of the things I can do. I can read again, I can watch movies , I can handle light and sound. I live in my house instead of my bed. I can help with the food cooking. I can ride in a car. Even the days I can barely get off the couch from pure exhaustion, I embrace it . I turn it into an opportunity. It’s an opportunity to take a nap, it’s an opportunity to watch Glee. I have learned to stop fighting with what is. (Though there are times I still struggle with this) Fighting against everything makes life a lot more difficult . Softening and accepting what is allows us to receive abundance. It allows us to see all the things we would blow over if our mind is too busy fighting everything. Even if I can’t do much on a givin day, I can watch the birds outside. I can be present in the moment. These are the gifts of life. As my best friend pointed out, even if my memory sucks or I’m feeling exhausted at least I’m alive, literally . I do believe our world is a direct reflection of our internal world. If you want to see lack and the that’s where your thoughts focus, you’ll see plenty of it. I did that plenty. If you want to see abundance then look around and find it. It’s everywhere. It’s another day alive, it’s your friends and family, it’s your very breath of air. It’s that lame saying, is the glass half full or half empty ? Is it what you have or don’t have ? Is it what you can do or can’t? It isn’t about pretending you’re happy at a miserable job (life really is too short to be doing something you can’t stand) or putting a a fake smile on and being positive polly. It’s simply an awareness of your thoughts and focus. You ultimately can be the one to decide what your world looks like….
I pondered long and hard about sharing this post…. it feels vulnerable and exposed and it’s not what I am most passionate writing about but I figured I would share my story….
Where to begin is the only way I can start this post. I am so fittingly listening to a song called I Lived as I write this. Cute. Anyways in the last year and a half I have moved twice, lived bedbound for months, had a spirtual NDE (near death experience), almost actually died, came back to life, spent time in 3 hospitals, spent time in an Eating Disorder facility -aka jail, got medi-vacced to two places, flew on a normal plane, spent time with addicts of all kinds, relearned how to perform daily activities of living, lost 30+ lbs, gained 40 lbs, got angry at a lot of things, forgave a lot of things, came to acceptance about a lot of issues and I’m sure the list could go on and on….may 2015 be a new year to say the least.
So I’ve had serious digestive problems ever since this whole CFS thing came around…you name it, I experience it and on top of that there’s good old Interstitial Cystitis in the background (I think they’re all connected but that’s besides the point) which gets pissed off with a long list of random and not so random foods that they give you on a piece of paper to figure out. So now comes the act of eating which is a necessary need of life-You know the basic needs on those pyramids: food, water, shelter. Well somehow during the quest for “patient heal thyself,” my food list was falling smaller and smaller and the horrible digestion and fatigue that got aggravated with food persisted. Little did I know, my metabolism was also amped up as when the body is sick it requires even more calories (it didn’t help my anxiety was also at an all time high) So a disaster soon unfolded. After making a decision to go to Florida in the winter as I had done so well the year before, it was not long that the definition of weight loss accelerated to a new meaning and the gut problems became worse and worse. I tried working with dietitains but struggled to maintain a meal plan when I would feel so sick after eating and just ended up giving up. If a food gave me a problem I crossed it off. I had already had a crash there and was spending more and more time stuck in the horizontal position in bed. Then came the TPN or intravenous feeding which worked for a few weeks until more digestive problems started. I then really couldn’t tolerate food and soon stopped being able to digest fat very well. Now my blood cell counts were low. There’s no sugar coating it: Florida was a failure. So back to CT on a medivac only, laying on a stretcher the whole time, only to be admitted to the hospital right away. Ran a bunch of tests, basically get sent home with gastritis and failure to thrive. But this is it! This is the time I can heal my gut! I can find the exact right foods, I will fix everything! Next comes another CFS crash and now I barely have any energy to sit up and eat; there goes 5 more lbs down to a whopping 80lbs. Light and sound had become unbearable and I had to spend most of the time in the dark with headphones. “Emily (the internist) says its time for you to go into the hospital” The NDE (to be discussed some other time) had already happened one night earlier in the week and with complete and utter dread, I knew the inevitable was coming. The hospital -the last place you want to be with a diagnosis such as CFS.
So onto the hard flat stretcher and into the hospital- the first doctor almost throws me out saying go home and eat; soon comes busting in a new team. “TPN is terrible,” they say. “You must use the digestive track – you need a tube.” (The nice doctor does offer me Reiki with someone from their integrative department-she is still a friend today) Enter the psychiatrist with this stern unreadable expression on his face. He stares for quite some time and does the occasional “Uh huh” and “I see.”
“Are you sure you want to go through with this?” he asks. “Well, what choice do I have?” So in goes the nasal tube to test it out. Get fed milk and sugar all night, feel horrible. I didn’t throw up or excrete everything out, so it’s “working.” The nausea and hurling- take drugs. The abnominal pain-take more drugs. Spend 18 hours without food and water waiting for the tube procedure to be done. Was I the only one who thought that’s a terrible idea given the state I am in? Tube gets placed and the pain is excruciating. “Hold off on eating until tomorrow,” replies the new doctor on staff. Another 12 hours without food.
The next morning labwork is done; the doctor comes flying in, “We need to put an IV in for TPN, your organs are shutting down. It’s either that or I can send you to hospice because that’s the situation we are looking at.” Baffled. Confused. “I thought I needed a tube” I was supposed to be going home in two days. Tears. Fear. Reality. In comes the nurse to put the pic line in. My heart rate spikes. Fail. Feelings that I am going to die right in that procedure as she keeps hitting me, calling my name, which I can barely respond. Call in the special radiologist to put in the Pic. Success.
“You aren’t going to feel good” warns the nice doctor. “You have food coming at you through all different methods it’s completely unnatural.” Yes that would be a good way of putting it, feel completely full as I get fed through an iv and a tube. “I almost died” is all I can say over and over again. I can only process it in small amounts. I only comprehend it thinking about all my friends and family pouring in, tears in their eyes, looks of worry and I just imagine if the roles were reversed and I was in their shoes. That’s the only way I can make sense of it. I start crying and then stop. The psychiatrist listens and responds with the hmms and uh huhs. “Depersonalization” according him, a form of disassociation.
Hospital 2, a “special hospital” to rehab and get tube feed going. Get put in a room with a pretty view of the parking lot. It’s a revolving door through the small 80s style room. Physical therapy man arrives who is a little too over enthused and laughs when I ask if he’s ever worked with CFS. Occupational therapy with a kind and quiet woman. A psychologist who is determined to psychoanalyze and find the solution. Argue with him every day about the validity of CFS. Insists that these problems are some kind of psychological issue with my parents. Even agree to meet him half way to humor him and ask him to do the same. Still won’t budge on his view of CFS. Realize my arguments are useless. He’s right my problems are psychological I must have not realized it the past four years in the intensive therapy I’ve done- he’s clearly found the solution to everything.
Chaos in the family. Amazing support from friends and family. Mom comes in every day with a new plan. Still bedbound and unable to do much of the basic activities of life-you know, take a shower, go to the bathroom, cut your food, the things we all taken for granted. “You’re not coming home until you’re stronger.” We had spent the past year looking for an inpatient program that deals with CFS. No such thing exists. And it’s too bad because I have talked to so many people who go through periods of being bed bound or are barely able to take care of themselves. Regardless, putting on weight and gaining back some strength had to prioritize everything at this point. Insurance had cut. Two options given for next step (besides a nursing home): psych ward or eating disorder facility. Well givin those two -what’s left: I choose the ED facility.
Only one ED facility in the country willing to take tubes. Off to Arizona on a medivac once again.Travel by ambulance down a long and winding dirt road that never seems to end. Keep going up hills and turns until we arrive in the middle of nowehere as far from civilization as one could be. Cactus and hills and all different creatures abode. There’s even a donkey on some farm below the hill that eee ahs non stop. It’s beautiful-for a vacation. Horrified when I enter, state of panic and fear when I see where I am. Many eyes fixated on me that I couldn’t quite read. People seemed out of it and dazed. Arrive with a fever and an excruciating injured hip from physical therapy the day before. Cry hysterically. Make one friend who bops in and out at a fast pace while she dodges her “bed rest” orders. Realize quickly that there’s an assumption I am full of crap and an anorexic in denial. Completely shut down.
The first few weeks were brutal. Trying to figure out the rules and then realizing they were ever changing, people questioning why I was in a wheel chair, hearing the mocking comments like “oh you must be so tired, you have been sitting up for sooooo long.” I felt alone. The atomosphere was nothing I had ever expereinced, no dental floss in the bedrooms for it could be used for self harm, no hand santiizer because people will drink it, no flushing the toliets because people might throw up, no cell phones, the list goes on and on and on. I soon figured out why as I heard hurling in the bathroom from my room and the “Oh I forgot- I flushed” over and over.
The days began at 6 am and went till 930 at night. They had me out of the bed quickly but sitting in the chair all day was a struggle for me within itself. Refeeding was another process. The IBS was ten times worse with that volume of food and the amount of variety of things in it. I felt so depressed and alone. It is the worst feeling to not be believed, to be treated as if you are lying especially when you are someone who prides themselves off honesty and integrity. I dreaded each morning. I hit the lowest of all points. I wanted to die and didn’t care if I lived. I finally admitted it when the one on one tech assigned to me said something about me not being genuine. I refer to that as my surrender point. It was probably the best thing that happened to me. By surrendering I stopped fighting so hard. I didn’t care what medication they put me on. I knew I had to do something and that it wasn’t up to me anymore. I got on medication and one day the feelings stopped, I sort of just realized oh hey I don’t want to die. I started to feel some joy again. And in came the psychiatrist that probably saved me. She was warm, compassionate and genuine. “I never once doubted your case that the eating issues were secondary to everything else,” she tells me. She knew of CFS as she had worked with Fibro and a child with chronic paro virus. She had heard of Interstitial Cystitis. I slowly started to trust her. As I started to trust her, I slowly started to trust others. I felt safe once I knew someone was believing me, someone was hearing me. I got the dietitian to listen to me a bit more and work with me on a diet to manage the IC or at least get it to a point so I wasn’t experiencing incontinence anymore. The doctor took my foot pain seriously and ordered me an MRI and a visit with a podiatrist. I began to meet people and some were pretty cool. Once I started to visibly see weight gain, I was excited! My hardwork was paying off. It motivated me more to work hard on finishing meals no matter how much physical discomfort I was in. I was like a little kid obsessed with their body (in a good way), I kept patting my stomach in pride. One plus to the medication was increased appetite and weight gain. But most importantly, I quickly realized no matter how sick I feel, I have to eat, end of story. I knew once I had that realization, I would never have the same problem again. Every part of my being knew I would never end up in the same situation because most importantly I refuse to end up in that place (literally and figuratively) again.
My physical capabilities came back slowly but it was the small things that I appreciated. One day I finally was able to sleep on my side again. One day I was finally able to reach my toes. One day I was able to hold my legs up long enough to put my pants on. One day I was able to hold the handheld shower and shower myself. As time went on, I found other things which I am most excited to blog about. I learned to accept my “conditions” and still have joy living with them. I learned to start focusing on what I can do vs what I can’t do. I learned more patience. I learned compassion. I learned everyone has a story to tell. I learned to live in the now vs some time in the future. I learned how to have faith. And these are the things I am most passionate to begin writing about….. Status update: I spent about 4 months in hospital settings. I arrived home right before Christmas flying on a normal plane with the assistance of a wheel chair. Every day I am becoming more and more mobile. I go to physical therapy and adhere to my very gentle exercises and am continuing on my journey to treat the rest of me which I shall continue to share….
Please check out the upcoming 21 day meditation challenge at the bottom!!! So I wrote my last post about being Zen about the blizzard that dropped three feet of snow on us. Well by the day after that post, I threw most of that out the window. I will post the picture from that day at some point. It was raining. Grey. The car was stuck in the driveway. The white snow had turned black. As the freezing rain poured down on me, I literally texted my mom: “I’m coming to Florida.” My parents spend a lot of time down there in the winter. It was a debate in the fall if I was going to come down then we eventually decided no since the trip itself would be hard and all of my “resources” were back home. Well, that dreary, gloomy, sleeeting winter day, I decided on the spot, no matter how hard the trip was going to be, the current weather and situation wasn’t conducive to ANYONE’s health.
The flight down went smoothly, my mother made it very simple for me and we decided to make it super simple by doing the whole wheelchair thing from gate to baggage claim. I know I will get to look back with big smile soon and really say: look how far I have come. I had a hiccupp a couple of days after arriving but it’s been all good uphill since there. And I am not discussing any of that any further as I am doing a “brain retraining program” right now :)
It’s been a bit of a time warp,my emails and texts have piled up. Meanwhile, I have been out in the sun, meditating like crazy and going “back to the basics.” I brought down the bare bone supplements that I know defintley help and other than that am taking a break from everything and focusing on natural vitamin d, destressing and taking a life break. Although I don’t think of anything back home as particularly stressful, I didn’t realize how running around to appointments, going to work and trying to keep up with things to the best I can is stress even if it’s not perceived that way by me. Even removing TV from my life for awhile has impacted how much more quiet my brain feels.
It’s been nice to pull away from everything and get some clarity on things and to just stop trying so hard. I came down here with a plan to read a long list of books that I found interesting, journaling assignments, this that and the other thing but I got down here and sort of threw it away. It’s a time to just be.
The only thing I am working hard at is the Dynamic Neural Retraining Program I am doing. It was orginially designed for people with Multiple Chemical Sensitivites but has branched out to CFS, Fibromyalgia, Chronic Pain, PTSD, etc. It is similar to Gupta’s Amygydla retraining program, I simply choose DNRS because I was looking to buy one of the programs used and it was the first one I could get my hands on. It is based on the growing field of neuroplasticity. It basically helps to bring the nervous system out of the chronic flight or fight mode that it has become stuck in from an initial trigger, in the case of CFS, the trigger is normally a virus or infection. I will post a lot more on this soon but I am impressed. It’s just a lot of work so this break was a really nice time to start it because I truly have the time. It requires a minimum of a hour of a day of assignments after you complete watching a long DVD series. I have talked to a lot of people and most will tell you, you really only get out as much as you put in and as you learn, repetition, repetition, repetition is so important for “brain retraining.”
I am starting to slowly sleep better. And anyone who knows me knows this is huge for me. My sleep patterns have been disturbed for so long.<
ANYWAYS: The real reason I wrote this post. Starting tomorrow is another 21 Day Meditation Challenge through the Chopra Center. This time Oprah and Deepak are teaming up together. The theme is Perfect Health. I highly, highly, want to reccommend this to anyone. Even if you are reading this late, you can join at any point. This 21 day challenge in November is what truly exposed me to meditation. It's 15 minutes a day. We all have 15 minutes. I really reccommend just setting your alarm clock 15 minutes early and not getting out of bed until it is done. I can attest to how hard it is to actaully to do it as the day goes on. I am no different.
The meditations are a really gradual way to get into them. They have an inspirational message for the first couple of minutes followed by a meditation with a mantra. If it's overwhelming, start in small doses and work your way up to the 15 minutes. It can seem daunting at first, I know when I first started them they felt long and I couldn't get my mind to quiet, I was amazed at the end of the three weeks how much easier it had become and how quickly they went by. Now, I look for longer ones because 15 minutes doesn't cut it. I remember being really amazed at how much more centered I felt towards the third week of the last challenge.
Many people get really intimidated and put off by meditation. But meditation does not have to be intimidating and is truly beneficial to everyone. Look in Pubmed for all the studies on meditation and the positive effect on health and well being https://www.google.com/#hl=en&q=pubmed+meditation&oq=pubmed+meditation&gs_l=serp.3..0j0i22i30l3.1873.3771.0.39126.96.36.199.0.0.0.177.1007.7j4.11.0.les%3B..0.0…1c.1.5.serp.2NQIkWZRHbc&bav=on.2,or.r_cp.&bvm=bv.43287494,d.eWU&fp=a7c13f9524bf647b&biw=1600&bih=783
Meditation helps to decrease cortisol which a lot of us tend to have LOTS OF in our high stress society. Chronically high cortisol levels leads to belly fat, insulin resistance, depression and a long list of unwanted things. Meditation has been found to lower blood pressure, cholesterol levels and improve sleep. For the long list of meditation benefits click here: http://http://www.chopra.com/ccl/why-meditate/?utm_source=Newsletter&utm_medium=email&utm_campaign=Meditation%2BNewsletter
I think most importantly, meditation allows us an opportunity to slowly start to learn how to “shut off” temporarily and connect with ourselves. It is amazing how much easier everyday life becomes after consistent meditation. You will find your reactions to people and situations may not be so extreme, other people may find you more “happy” in general and the things we truly desire out of life start to become that much more clear. I could go on.
It’s 21 days. It’s delivered to your email every day. It’s free. Try it. I dare you.
And that is all. Do you meditate? Are you undertaking the challenge? Let’s hear!
HAPPY BLIZZARD!!!! (Check out more pictures at bottom)
So I stated in the last post if you ask five people, “what happened?” you will get five different answers. How true that it is. I was surprised how many different responses and interpretations I got on the last post. I was slightly defensive about it and felt like I didn’t convey my positive message right but than I realized this is no different than what I talked about. We all bring something different to the table and we all walk away with our own unique taste based on so many things.
I write this blog to be about one journey with life, to share life lessons that everyone can relate to on some level. My lessons just happen to be learned through a healing process from some health conditions.
I will have posts sharing health info, like the next one coming, (it is something that I am very passionate about), treatments, food, etc. But my overall goal is to simply be honest and real.
Finally, sure, I would like to raise some awareness about CFS just so people understand a little more-maybe help other people be exempt from the many comments such as the typical (yes these are things i have heard) “I think I have that- I am really tired too.” “Depression is hard.” “You should drink more coffee.” ” Oh well, why haven’t you gone to Doctor X, Y,Z, Hospital A, B, C?”
But that’s not my focus, that’s not what my passion is. Other than spreading some basic awareness, I want to share life lessons, information, inspiration. I am simply documenting one human journey through life.
So a continuation from the last post and perfect timing with the Ice Age 3 that just happened: finding contentment from within. When I finally shifted recently after my crash, I took yet more lessons to go onwards and upwards. In many ways, we all “crash” at points in our life even if it’s not a physical deterioration: we get in a rut, we become discontent, we find ourselves facing a difficult series of events. It’s what you walk away with that matters. These are the tools that allow us to move forward to face our next challenge with a new perspective.
The meditation I put on the day after I wrote my last post (mind you, I just randomly put them on not paying attention to the title) couldn’t have coincided better like they all seem to. You really do always get what you need!
“Everything I desire is within me.”
I was brought up with this concept, along with, “life is what you make of it,” but I used to just get pissed when I would hear it. I’d always shoot back at my mom “well you just don’t get it.” But whether we like it or not, it is so true and this is the very concept I was arriving at. And this last crash left me no choice but to step up to the plate and face this.
Assuming the basic needs of food, water, shelter, are met, we always do have what we need to make our lives “something” and to truly be successful. We tend to start running quickly with the idea “Well I don’t have, x, y, z.” We all do it. And I won’t lie, I’ve done it plenty with the whole health situation.
But all of this is simply looking outside ourselves or everywhere but our own lives for happiness, security, contentment, you insert the blank. All of us experience difficult times, or have difficult situations in our life. Whether we like it or not, life can throw us a lot of shit: sometimes all at once, sometimes over gradual time, some of us more than others but we all have that something. As an article that I read in a magazine put so well, people seem to be so consumed when something terrible happens to them, they can’t understand why. “Why me?” “Why not you?” The author stated, “Who do you think it should be instead? The neighbor?”
It’s what we do with this “pile of shit” that defines our lives. In this very moment, many people are experiencing difficult times all over. But every setback in our lives is simply another opportunity. It’s an opportunity to take that outside look, a chance to redefine priorities, re appreciate something, find another route, create new options and move forward. “The seeds of success are found within every challenge.”
The theme ties the last posts together well. Technology dependence for constant connection, feeling stuck, and the likes…
I know that I was finally to shift from this recent crash to relight a fire of determination, to reexamine the importance of mindfulness, and to alter my healing plan once again. My list of things which I will be excited to share and write more about, especially for the fellow health journey readers, includes: DAILY Morning Meditation, Stillness Buddy (courtesy of Johannes Stark’s site), more EFT, tweaking with methylation protocol, and more. But most importantly: I used this recent setback to rememembr how to be content with ME, with whatever my current situation is.
There’s always that something that can bring us back to that place if we get too far. Maybe it’s a walk outside, listening to a favorite song, playing a piano, reading a book, art, taking a bath, playing with your pet, the list goes on. What’s yours?
Finally: TO TIE IT IN TO THE CURRENT BLIZZARD:
Well in the good old Northeast, we have all been stuck in our homes for over 48 hours. The plows can’t get through so they have had to resort to tractors. I’d say that slows down the process. I can’t help but feel a little entertainment/amusement the way everyone I have talked to is going so incredibly stir crazy/off the wall being stuck in the house. 48 hours!!! This has been my life on and off for over the past year!
I do get it, I know when I start feeling well is when I go really stir crazy being in my house too. But it is the perfect opportunity to take that moment and realize how to find contentment. We can’t change when the plows will come but we can change the way we respond to the situation. We can use it as a time to appreciate what’s around us. We can appreciate all the things we do have: power, heat, etc. Best of All: we can just simply LAUGH at how absurd the whole thing turned out to be.
But most importantly, we can remember that “each situation that challenges you fund the seeds of success”***
***Deepak Chopra’s 21 Day Meditation Challenge: Creating Abundance. Check it out!
Check out the pictures!!
I found the bird pretty special. He was the only thing out there riding the branch during the storm. He was right outside my window- I found it to be very symbolic. Check him out at the bottom.
Have you experienced a blizzard?
I have a ridiculous long post coming. I have the little interesting tidbits in it on different things like what stress does to the body, acupuncture, the role of viruses in CFS and many chronic illnesses, bla, bla, bla. And it was taking me too long. So forget it that’s for later.
I crashed two weeks ago. And I crashed hard. (A crash is when symptoms flare up with a vengeance and all the lovely “sick” feelings come flying back at once). I didn’t leave my house for 5 days and didn’t have any real turn around until about 10 days (I am very lucky compared to some out there).
This crash was difficult for me. I normally go with the flow and just ride it out, if anything I am used to it. But this one was intense. I was extremely down, frustrated and soon became my own worst own enemy.
I truly thought the days of intense crashes like this were in the past. Not that I thought I was healed or anything like that but “a crash” is very specific, it’s different than a flare, it lasts for a long time and it’s at an intensity that is truly debilitating.
I felt defeated for a couple of days. Then I felt fed up. WITH EVERYTHING. I felt like if I had to look at my house for another minute of my life, I would lose it. The monotony: the same town, the same drives, the same scenes, the same minimal schedule, the same limitations.
Mid week I had a visitor, an old friend from the other side of the Earth (literally) who was on a trip in the US for a bit, part of a big graduation trip before starting a new job back home. We made do with the situation. But when he left, that old feeling of “being stuck” came back rapidly. My friends are all doing amazing things with their lives. I am so genuinely happy for them. But I’ll be honest: it can be hard to feel like you’re just in an idle, limbo land.
Even my good friend from around here who deals with her own chronic illness has started working consistently. Yes, part time, but 5 days a week and she loves it.
So soon I became my own antagonist. “I wish I could work” “Same old scene.” “You do so many things to get better but what difference does it make?” “This illness sucks” “Wow you really have been stuck in this town for over a year.” Then the whining. “I want to move on with my life.” “I am so sick of all of this.” “I want to be able to work.” “I want to be able to run” “I want to get out of here.” “I want to be able to do something to light up about.”
But at a certain point this becomes RESISTANCE. AND IT REALLY DOESN’T GET YOU VERY FAR. And I know illness or no illness, everyone can relate to this at some point in their lives when they want everything else than what their current situation is. Or better yet when that inner voice takes over and soon you start finding life that much more difficult. All of a sudden you truly can’t tolerate your boss for another day, your clothes aren’t good enough, your hair isn’t pretty enough, you need a new car, you’re never going to find a guy/girl, your body sucks, the list goes on.
Ever notice the more you brew in it, the worse it seems to get? Or all of a sudden you’re now fighting with people, or shit is just going wrong in your life?
Monday Morning I decided to try to pull it together. I have vowed to start mediating every morning to start my day more centered, to simply remind my body of what homeostasis it. Plus, it just seems to be a common theme for people that have gotten better, and hell, it’s a common theme for people who are very successful in life. Yes- meditation does not mean you have to have hair down to your butt and flowers in your hair. THE NBA team, THE LAKERS, MEDITATE !
I threw on a random one that was on my itunes from my awesome Christmas present of Chopra’s 21 day meditation challenge (Thanks Dad!). Hey-you really always get what you need. I started laughing a minute in when I heard the words. The theme of the day: “Today I focus on what I want to attract in my life.” He went on to say if we focus on resistance and difficulty, well, we will simply continue to have it.
Just because we do not have something in this very moment does not mean it cannot happen or exist. Some people will look at their lives and see lack while other look and see abundance. Who do you think out of the two feels limited? I have posted on this before, changing your thoughts and beliefs can change your situation. You can’t change everything but “reality” is changeable. Thoughts, intentions, attitudes and expectations are really what makes our reality. So I guess you could say in some ways that means reality is very multi dimensional. Ever notice when you ask, “what happened?” to a group of people, you’ll get five different answers?
I felt better for an hour or two and then back came everything! I finally had a long chat with my mom about everything that night. My frustration, the situation, the lack of people that understand yet alone even believe the condition is real, the forwards-backwards, the I have had enough.
She was tough on me. But I needed it. “When life makes you lemons, make lemonade.” “You have to make the best of any situation given to you.” At first, I was just pissed. But the more I talked through it and softened, I knew it was true.
I stewed in all the negative emotions for awhile. I needed to and as I always propose on this blog: you should. Feel things, they’ll just come up down the road in a ridiculous magnitude if you don’t (ever had that over the top break down that comes out of no where?). But it’s not productive to sit in the same thing over and over again and not move through it. That really is the definition of stuck.
The next day I hung around the house but I cleaned my room and I painted for an hour listening to PANDORA, went to an appointment, and made some food. And I felt so truly happy for my day. I was mindful and aware the entire time.
And the hour I was painting, I had a surge of joy just realizing what I was doing WAS something. I did produce something. I did do something with my day. I wasn’t stuck any more than a gerbil thinks it’s stuck on the wheel. Maybe my Tuesday was not what “it should be” or maybe it not “what everyone else is doing” but I got up and lived a day to the fullest that I could.
And that’s more than enough.
I will post the stuff I have vowed to do later. One is being mindful and not pushing through my limits. Hence the end of this blog post.
All is well.
I am going to have to do some post flipping. I have a post already started that I guess will have to post after this one. As it is almost the end of the day, I am proud to say that I have officially not checked my email all day. Roll eyes at how ridiculous that sounds. I wanted to throw my phone out the window yesterday because I was checking it so much. And then getting mad that I was checking it so much. I was on a spree of catch up this weekend which I try to do when I’m doing well. Catch up normally consists of the list of callbacks, emails, cleaning, etc, the typical pile up stuff that creeps up on everyone. Between Sunday and Monday, I put out probably a good 12 emails for every reason possible: career interests, responses to old emails, inquiries, a project that I am slowly trying to work on, etc. I then went on a Ebay rampage from recent de cluttering efforts to make a little money from the shoes I am finally accepting will no longer be ideal for me anymore. (Anyone want to buy my stuff ??? :) Lots of shoes!) Well as of the end of the day Tuesday, I had not received ONE response and my shoes had ZERO bids. NOT ONE. FOR EITHER! And somehow I thought hitting the mail icon every thirty two seconds on the iPhone might change that. I drove myself off a wall and I got to a point where I wanted to take it and chuck it out the window into the 8 degree weather outside.
I think of myself as not particularly attached to my phone. I laughed when I watched the special on TV about the four girls who had to go through a 2 week detox from their smart phones and basically had complete breakdowns. … When I was in my very rough patch this fall, I would turn it off for days at a time. Minimal word response texts of “bad day call you when better” became universal language. I learned to embrace not being so dependent on it. Somehow it has creeped back in. I have forced myself to only put it on the charger in my bathroom at night so I don’t use it before bed (also better for sleeping environment…need to post on sleep at some point). But still, the second I wake up in the morning and stumble my bathroom with a sleep mask on , I pick it up and hit the mail button.
So this morning I vowed to not check my email all day. You think a better response would be to leave my phone at home all day but I’m not at that point yet. Maybe that will be tomorrow’s venture. I figured the chance something pressing comes in that needs to be answered immediately is slim to none. And the chance my stuff has sold on Ebay is even more slim to none. It’s one of those weeks. I bet if I went to one of those astrology sites, it would probably say it’s a terrible time for me to do business or communicate with people. Try again. Ha!
It is disgusting how bad the habit has become, I got off the phone (after trying to find a way for my slippers to get home from Starbucks an hour away, don’t ask) and I hit that evil mail button without even thinking about it. I yelled out loud when I realized it and quickly turned the screen off. AND I did it a second time later.
Technology is amazing. I have this blog because of technology. But being completely dependent on anything in life other than the basic needs really isn’t healthy. And as this blog has a big theme of mindfulness and living in the moment, I don’t think I need to go into too much detail of how being attached to a smart phone, whether it be texts, emails, phone calls or notifications is just a distraction to avoid being present. Yes, many of us need it for work. But all of a sudden this gives us this guilt complex that we must answer people immediately and be on call 24/7. It makes it that much harder for us to take a night off.
I know I caught myself starting to feel so dependent on hearing back to make myself feel okay. This is not about being present. It’s about looking from outside sources for contentment. All of a sudden, I had this need for attention instead of just finding contentment myself. I know perfectly well that people are busy, they don’t check their emails every five seconds, etc. The reason they are not answering has nothing to do with me, but all of a sudden when I have things I am waiting for, I start becoming obsessive with my phone that allows me to check things constantly, it becomes (this is what RT calls headmind) why is no one answering me?! Or did I do something? Or NO BIDS on my items!? All of a sudden I have this ridiculous need to be connected. How many of us tend to do this when we are sitting somewhere waiting for someone? Or we are in a public place by ourself? We text, we call, we read emails, we read the news, anything from having to be present with nothing to do! My generation has become immune to the addiction. We don’t know anything else but being connected 24/7.
It’s evident for me that I need to go back to leaving my phone on the charger or leaving it in other rooms a lot more often or better yet leaving it at home for the day… I guess tomorrow I will have to check my emails for work and such but maybe I shall go back to toning it down.
You tell me: Are you a technology addict? Could you leave your phone at home?
Speaking of technology addict: I figured I’d supply the lovely image I did get to see this morning instead of my inbox:
2012 has been an interesting year to say the least. A lot of chaos, a lot of growth, a lot of bizarre. I remember starting 2012 so assured that it would be a good year because how could it not be? I had been through hell long enough, how could 2012 not be the end of the tunnel? I mean after all, it was time for me to be able to get on with my life. Well 2012 was far from what I imagined and far from what I planned for. I know it will go down as one of the most challenging years of my life. The physical deterioration, the emotional upheaval that resulted, the fear, the uncertainty and everything else. But after all that, I would not change it for anything. I can now officially say: 2012 has been the most transformational year of my life. Sometimes everything we don’t want is the very best and most pivotal things that we will experience.
And now here comes 2013. So what is the difference for me this time? There is no attachment either way. I am not hanging onto an idea that the year must be a certain way, that it must get better, I must get better, I deserve for it to go better or anything of that nature. I set my intention for this to be an amazing year and let the rest happen. I look forward to all the things that it will bring, whatever challenges, hardships and great times that it has in store. Whatever the year brings is simply part of my path through life. Through so many more ways than we realize, we create our reality. This is different than the blame, shame and guilt stuff. I am not saying we are at fault if things are going poorly for us or we are struggling. Life will always have the unexpected turns, the ups, the downs, the things we never saw coming, the things people shouldn’t have to experience. But what we do with these turns and events is how we shape reality for ourselves.
I spent New Years Eve with a friend that I met just this year though it seems longer than that. Her 2012 shared many similarities to mine of a long, drawn out year of many ups and downs, growth, setbacks, a long path of exploration physically, emotionally, spiritually, doctors appointments, insurance phone calls and tests up the wha zoo. She was diagnosed with EDS, type III, last fall so in many ways we were going through the same process, Denial, Grief, Anger, Acceptance. Sound much like a grieving process? Well in many ways when sickness comes about that isn’t acute, you quickly realize how you no longer have a life and identity that you have maintained for however many years. So through the process we went. Sometimes at different stages, sometimes on par. Point being? 2012 could easily be said to be rough for both of us. So on NYE, we decided to close the year in a way that made us really appreciate everything that happened.
We wrote down on sheets of paper all the things that we were happy for, all the things that we were grateful for, all the things that would make us appreciate how 2012 was so far from just the year from hell.
The list was amazing, the little things that you might not even think about in a year: seeing the movie, The Intouchables, reading many good books, discovering new foods, the car rides with my Dad, hanging out with my dogs…. and I know some of you heard from me in regards to the very special things that made it on the paper that you all did that touched my heart this year.
The bowl took a night and morning to go through.
There was one particular idea that shocked me. I just wrote and it as it came out of my hand and was in slight disbelief when I read it back:
” For getting so sick”
Yes. That’s right. I said it. Try to remember this can happen for you too when you’re at a point in life when you feel like you’re walking through hell.
It really has been pure hell at times and has had some very dark lifeless moments (hence the lazarus) but I can’t say that I would change it. I have learned more from it than I could have in an entire lifespan, it has changed my life and taught me lessons some people will never be able to learn. I have met amazing people, I have been exposed to things I would have never known existed, I have developed new interests and revalued my amazing relationships. And most importantly, this journey of sickness back to health has allowed me to (one of my other things on the list) be so lucky to have experienced the process of
I think that is the most valuable thing I gained out of 2012. As they say “you have to lose yourself to find yourself.” In some ways, we are all forced do this to a certain extent through any difficult event. Having your life completely disappear in a matter of what seems like a couple of months and starting from scratch will certainly leave you no choice but to start a journey of finding the true you. And when you do, it’s like finding a light that you never knew existed, a new source of power that makes life that much more amazing and meaningful. . Every day of our lives is part of that journey to find that true person we are and the end of a year is a perfect time to reflect on the culmination of all the things that have come along on your path.
If I looked at 2012 factually or even in a “realist and practical” way, my 2012 was filled with many weeks of being bed bound, months of being house bound, 16 more doctors/specialists to add to the long list, too many appointments all over the state of Connecticut and New York, 30+ rounds of bloodwork, medical “tests,” too many shots in my ass than I care to remember and many roller coaster rides between doing okay and being incapacitated. But that’s not what I choose to remember. Just like I realized one day this summer, we always have a choice. I could choose to be terrified of what was happening and what my future would hold or I could choose to have faith and know that everything was going to be okay. I chose the second.
So 2012: I choose the laughs, the joys, the time with my family, watching movies, becoming a professional Olympics spectator from my couch, watching the Voice (and winning the bet!), sitting outside in the sun, spending time with my Grandpa, my new discovery of painting for fun, and the many more things on the list.
Take a look back at your 2012, it’s never too late. What do you choose? What does 2012 mean for you? What will you remember? Take a minute, make a list, No matter how small or big of an event, let the list flow out. This isn’t forced optimism, it isn’t about guilt if you still feel the year wasn’t a good one. All it is, is a true genuine awareness of how much exists in your life every single day.
Let 2013 bring everyone health, prosperity and happiness.
I know it will-you are the creator of 2013 that you desire.
All is well.
It’s that time of year. After just finishing watching Love Actually with my dear friend of ten years (God we are old) and after blasting Cee Lo Green’s “All I Need is Love,” it sort of clicked what the next theme needed to be. Love. And unlike what the media,music and movie world has decided for us, love is not about being single or not single during the holidays. Love is infinite. Love is what connects us all. And with all the tragedies that have recently happened, the importance of love couldn’t be more understated. Love is healing. When tragedy, the unexplainable, difficult times, sickness and the other difficult waves of life happen, we become overwhelmed with the negative, toxic emotions. We soon become consumed with anger, rage, fear, sorrow and these are natural reactions. We need time to process these emotions and they should be expected, we need time to grieve. But when we become entrenched with these toxic feelings, we only hurt ourselves more, we trap ourselves in a place that becomes harder and harder to get out of. The only way to begin to heal is to realize the power of love. Love is healing. Look at what has happened over the past year, there has been many difficult times and tragedies. It is very easy to become consumed by the negative of “what has the world become?” But when we do this, this very “evil,” has gotten exactly what it wanted. And if you look at everything that has happened, it is amazing to see how “evil” has not succeeded. People have poured in support for one another, they have come together, they have facilitated the healing process. States, towns, communities, individuals have overcome unimaginable things with the power of love and forgiveness. And that brings us to today, Christmas, a time of love. Forget it being about being single vs in a relationship at the holidays, or the amount of people that you are surrounded by at Christmas. Look way beyond that. The holidays is a time to cherish the amount of love we are surrounded by, the one source that connects us all to each other. Love isn’t about having expectations on getting things in return, it isn’t about some ideal romantic dream, it is a true genuine feeling with no requirements on reciprocity. Love comes from within each of us. In fact, as one book I have read explained so well, if you’re living a life of gratitude, you are harmoniously living a life of love. The two seem to couple each other hand in hand. Think of the way you were surrounded by love in some way this Christmas, no matter what way you spent it. Maybe it was that phone call from a family member that brought a smile to your face, the random act of kindness you witnessed or heard about, the people in your living room, your dog’s wagging tail with the excitement in the air, the list could go on and on. As the song so fittingly changed in Love Actually
Christmas, “Love is all around me and so the feeling grows.” Merry Christmas and Happy Holidays Everyone.
Next…. Love, Health and the Healing Process
So this post is rather late. Better late than never? As Thanksgiving just finished up, I figured I would write about the oh so obvious theme of the holiday, thanks and gratitude. Thanksgiving was not completly “ideal” for me this year but I felt a stronger sense of gratitude and joy for the holiday than I probably have my whole life. Persepetives can change. And quickly. Sink or Swim as they say.
On Monday of Thanksgiving week I woke up with an upset stomach. I have so many digestive issues with this whole game of body malfunction, that it is absolutely nothing out of the ordinary for me. So I decided I would take it easy on my system for the next couple of days and stick to a lot of press made juices. (Yes, I have become a juicer, courtesy of my brother who put his Crohn’s and health issues into remission with juicing and major diet changes). Well long story short, Thursday arrived and I am in more pain and still unable to eat. We weren’t eating together until Friday but I knew it looked grim, I was barely able to handle applesauce.
I had planned on this meal for so long. I had been working on the cooking all week, doing it in small batches of time since too much time on my feet and doing something labor intensive can knock me out for days. I had worked so hard on the dishes and was so excited to enjoy this meal with everyone. And to be honest, part of the fun of cooking is being able to eat the meal with everyone after.
So what did I do with this sitaution? I cried to my Mom. I felt sorry for myself. I let it out for a couple of minutes. I needed to. I sort of have forgotten what it is like to cry and that’s not healthy either! I knew it wasn’t a big deal and I have made so many adjustments over the past two years but sometimes I just get fed up with having to do so over and over again, sometimes it would be nice if I could just have a break for a short period of time. I really never ever ask, “why me?” or “can’t I just have a break?” because I know, one, it’s a pretty pointless question and two, it just creates more resistance.
But sometimes you need a minute of self-pity.
Food is my passion. I am ridiculously obsessed with it. When I started to having to make drastic diet changes due to new food intolerances, growing digestive problems and the lovely Interstitial Cystitis, I made it a positive. I complained for a minute and moved forward. I did what I had to do. I learned how to come up with cool new recipes, I learned how to make alternatives taste good, I figured out how to make it taste good for other people to try. And as I continued to have new digestive issues arise, I rolled with the punches and made the adjustments necessary. My passion for food has become one of my only staples throughout all this. I can no longer run or let alone exercise, I can’t ride a horse, go for walks, travel, go out at night, the list goes on. Food has been the one thing I have hung onto and this was Thanksgiving, THE HOLIDAY OF FOOD. All I wanted to do was to be able to prepare and enjoy a meal with everyone.
My Mom was great (THANKS MOM!). She let me have the pity party for a minute or two and then told me clearly this year it wasn’t meant to be about food for me. It was just something else I had to rise above. I muttered that I was sick of having to always “rise above” but I knew she was right. And besides, she pointed out, Thanksgiving is about time with family, with or without a meal. I knew she was right. I brushed myself off and went downstairs to finish the cooking.
The next day I was not any better. In fact, I begged the staff at the gastroenterologist’s office to let me be seen because of the pain I was in. After all that, I was told it was probably just viral gastritis on top of my typical digestive malfunctions. AKA we can’t do anything about it. I helped my sister finish cooking that day and took a rest before dinner. I wasn’t able to eat a meal but I had one small bite of almost everything. I happily made myself a Thanksgiving plate that is still in the freezer waiting for me. But regardless of that, I was so incredibly grateful for the experience. I was grateful to even be able to enjoy the couple of bites here and there. I made it through the entire dinner (which for those close to me is big deal, there have been many gatherings and events I have missed due to a crash). I was able to socialize and function. I laughed. I caught up. The meal had great reviews and people got to try out new things. I even made it through half of dessert before I had to retire to my room.
My family was so amazingly supportive. I got to see my sister, her husband and kids. I got to see my Aunt and Uncle who I don’t see much. My 88 year old grandfather celebrated another Thanksgiving with us, still going strong. And of course I got to spend another Thanksgiving with my amazing parents who I have become closer to this year than I have over my entire 21 years prior.
They say gratitude is a being of existence not a temporary passing feeling. This adds to the list of difficult things to figure out and practice. This Thanksgiving, I felt so truly connected to this concept. Sure things have been rough this year and at times gratitude is the last thing I can possibly feel or think or “be.” But Turkey day helped me realize what it means to be living in gratitude. Simply being able to enjoy company with my family left me with a state of calm, happiness and joy regardless of physically feeling terrible.
Fourteen days later I have graduated to eating rice but not much more (I have probably consumed more rice in the past couple of days than half the continent of Asia) and drinking small amounts of a “medical food powder” (Sort of like protein powder but instead has vitamins and specific things to help bring down inflammation-Ultra Inflamx by Metagenics for those of you with health issues) Having my digestive system quit for awhile has made me continue to find out what gratitude really is. Although at first I was so frustrated that food the way i love is not an option right now, I realized there are plenty of other ways to be happy and much to still be grateful for. Nothing defines us even if it is something we feel strongly about. I am much more aware of how much I cherish all my relationships, how I love to hang out with my dogs or spend time with my family. I have some of the most amazing friends in the world, amazing family and I am surrounded by love. I am grateful for my body for doing its best to deal with this and heal. My digestive system is happy to have a break and I am even grateful that I am able to identify and give my body what it needs even if it frustrates the whiny child in me that says “but why!”
There are always things to be grateful for. They are just not always to see especially when our “egos” try to convince us of everything that is wrong. And that happens way too often. I started a journal activity in the summer (which I have even gotten lazy about) of writing 3 things that I was grateful for that day, no matter how small, trivial, or awful the day was. Try it. Reread them when you’re done. Do it day, after day, after day. It will soon no longer be forced but become natural. Before you know it, you will be “living gratitude” every day you are able to wake up.
Try it for the month of December. It takes all of thirty seconds. An extra 2.5 minutes a week. See what happens. You may be pleasantly surprised.