I promised a friend over a week ago I would write this post, but it got lost in the Mayo clinic chaos so here it finally is A! My friend is struggling wth her own demons on this front but I don't feel at liberty to share her story, so I will share as much of mine as I can to make this all make sense.
First of all I want to address some common "mis-truths" related to food, weight and eating disorders. Some of this I have said in previous posts but they can't be said enough...
1) Not everyone's body works the same! What works for me will not work for all of you, what works for you won't work for me. We all spend too much time and energy trying to convince people to eat the way we do as their solution. Each person's body has its own metabolism and issues and the best way to find the right answer is to work with a professional (dr, trainer, nutritionist) to find out what works for you. Journaling what you eat is a totally invaluable tool. I used www.mydailyplate.com for this.
2) For a segment of the population, myself included, the equations "burn more than you take in" does not apply. I heard that spouted to a friend this weekend and nearly screamed. This is one of the biggest misconceptions in the world. For some of us, when we eat less we GAIN weight. Let me make this very clear, for me I lose weight when I eat more and gain weight when I eat leass. Obviously the eating more has to be realistic, but my body does not function well under the "eat less, work out more" mentality. I have said for as many years as I can remember I never ate enough to weigh what I did, despite all the "noise" in the world that I was fat because I was over eating. I have lost the weight I have because we have doubled my intake. As soon as I skimp and start cutting back on calories, I start gaining. I hate this reality, it seems totally illogical to me, but Gui has proven it out to me over and over again.
3) People with eating disorders weigh 70 lbs and look like skeletons. This is the most frustrating off all for me of the inaccuracies out there. I am here to tell you that it is total crap. Yes there are those who are what I call "Phil Donahue Anorexics" (btw I need to change that because half the people reading probably dont even know who Phil is but oh well *smile*), but there is also people like myself who have been in situations where they became extremely ill from long periods (months) of not eating yet were either still obese or actually gaining weight through it. Don't assume what you see doesn't mean there isn't a serious problem.
4) The only form of bulimia is vomitting. One of the most dangerous types of bulimia is one we hear very little about, exercise bulimia. Where people will exercise to excess, often hours at a time, to purge the food they have eaten. This can be just as dangerous and deadly as purging. And as with the amount of food, someone can be doing this and still gaining weight. Exercising more does not work for everyone as a weight loss tool. Especially if you are exercising in a way that you are burning carbs and breaking down muscle instead of burning fat.
Ok my story. First of all I need to say, I believe eating disorders run in families. Whether it is genetically programmed (which I tend to believe it is at least partially) or socially developed by sharing bad habits who knows, but it definitely is familial. My sister and I have both fought this battle, although in very different ways. She become the very thin anorexic/exercise bulimic and I was an obese anorexic/bulimic (purging) and exercise bulimic.
Like I said I have never eating enough to weight what I did, I never ate breakfast until the last 4 months, lunch was minimal and dinner was average. I didn't eat healthy food. I liked fried, heavy sauce, heavy carbs. But I have always eaten overall far less than my friends.
Eating when I am stressed is not a norm for me, I am just the opposite. When I feel stressed I don't want food, I stop eating. Eating does not make me feel better, often it makes me more anxious. And to this day I battle with that.
My true realization of having an eating disorder came in the 90's when I was fighting Pseudotumor Cerebri. I have probably had it my entire life, but this is when it went into high gear. I was stuck with a horrid disease that every piece of literature claimed was because I was obese and I was determined no matter what I was going to get thin. For the better part of a year I ate next to nothing, I exercised 5-6 hours a day (I was on disability so I had the time) and I purged. The result, I was a 225 lb eating disorder patient who was ending up weekly in the hospital with electrolytes so low they wondered how I was even alive. And through it all I GAINED WEIGHT!
In hindsight I was incredibly blessed with having the right person in my life, not sure I would be alive if it wasn't for Deb. She dragged my butt to eating disorder support groups, she helped me try to find inpatient treatement, she pieced my body back together every time I got in trouble.
I never was able to get inpatient treatment, which is partially why I find the myths so frustrated. Every treatment center we contacted turned me/us down because I was overweight and didn't meet their criteria of an eating disorder. Luckily I was able to find decent outpatient treatment and got it under control. Truth, until the last few months I would have told you I was past it and "cured".
I have come to realize in working with Gui that this is not something you ever really get past. As I have said multiple times in this blog, I fight on a daily basis to eat enough. The anorexic tendency part is definitely still part of who I am. And that frustrates me, because on a logical level I totally get it. I understand now how my body works, I know I have to eat to lose weight, I totally get that. Yet on another level I still feel bombarded by that message "eat less weigh less". I still have many days where eating is work. Where food is not appetizing to me and at times it even makes me feel ill after I eat. I do my best now to eat all I need to, but it doesn't come easy or without work. If I am not careful and get busy I still find myself missing meals and not eating enough. Eating is not natural for me, which sounds so bizarre but it's the truth. And that is really hard for people to understand. It is not about me being stubborn or difficult, it just isn't naturally wired in me.
Related to the exercise bulimia (or over working out). This one sneaks up on me periodically, but it is easier for me than the food. When I get stressed this one tends to show up, I want to go work out for long periods of time. I want to do double or triple workouts. I think these days it is as much about having weight issues as it is just also being able physically to work out that makes me want to keep going. I went 14 years unable to do much exercise wise, so now it has become something I really enjoy and it does make me feel better. I have to watch myself though, because I have seen that burning too many calories shuts down my weight loss.
Purging is a hard topic for me right now. First of all this is the grossest thing on the planet as far as I am concerned and is not something I have actively done in probably 14 years. It was an act of desperation for me when it was going on that then became habit. What many of us don't realize when we start down this path is that it does retrain your body. You get to a point that even when you want to keep food in your can't. It does a lot of damage to your body also, beyond just the lack of nutrients it ruins your teeth, your esophagus and other parts of your body.
I have promised all along to be honest about where I am at, so here comes the confession. The day I was in Israel (the Tuesday before I left) and I was having such a hard time, the purging thing reared its ugly head, and I was really broadsided by it because it is not something I even consider any more. I had forced myself to go to breakfast and eat, despite not wanting to. And it was one of those days where I felt sick after eating. More than normal. And all of a sudden I found myself pondering the option of purging. The mere fact that I was thinking that upset me more than anything. I am proud to say I didn't go through with it, I came back and emailed Gui (although didn't tell him these throughts were going on, just that I was over my head on food) and called my friend Laura (also didnt tell her all the details). I didn't tell either of them because 1) I was worried about being judged and 2) I just needed distraction. I needed help getting through long enough to where it wasn't physically possible to purge and then I knew I would be fine. Which is what happened, Gui and I exchanged some emails (sorry Gui I know I wasn't exactly pleasant at your response that morning but hopefully now this makes more sense why) but he was there and that is what I needed. He kicked my butt in the right way at the right moment.
I have to admit I have really beat on myself since that day about even having those thoughts, and struggled with whether I say anything, whether I keep it my little secret. I have gotten mixed advice on what to say to whom. Half of my friends have told me, you didnt go through with it so let it go. The other half have said be honest. Finally saying something comes back to the friend who I promised I would write this post. The bottom line is that for the most part I would say now I have anorexic and exercise bulimia tendencies, it is not in "active phase" as a disorder, but a lot of people ARE struggling. They are fighting alone and misunderstood. So I spoke up for them!!!!!!!!
The reality is a lot more people stuggle with these tendencies and the full blown disorders than we all realize. It is a really lonely place to be, and I hope if me sharing my story makes A's or anyone else's battle a little easier than this post and this blog has been worth it!
Monday, April 26, 2010
Saturday, April 24, 2010
Update on Mayo.........
First, foremost and always, thank you for the emails, calls and notes of concern. I am so grateful. Special thanks to the "sorority girls" on Friday night for the massive distraction (and the great wine). That was so much help! It was nice not to focus on all this for a few hours.
Ok now the update, I had two more days of testing and consults on Thursday and Friday.
Thur
Medical Genetics consult
Long MRI (3 hours)
Fasting bloodwork
Fri
Internal Medicine consult
More bloodwork
Nerve conduction test
EMG (muscle testing)
As a result of these more tests/consults are scheduled for May 12th and 21st.
At this point I have some pieces of the puzzle and some new findings that I didn't have from 15 years ago, but wont have a big picture of it all pulled together til my follow up with Dr. Cross (the neurologist) on May 12th. So I am going to hold off posting much of what I learned until I know how it all fits together and what it means going forward.
I know the big question everyone wants to know (from the calls and emails) is how I am doing. I am really ok. I am kind of neutral on it all. Once I got past Tuesday, which broadsided me, it got easier. As one friend pointed out, I think Tuesday was so hard because it was the first time in 15 years I have spent that much time and energy focusing on my physical imperfections. Having to tell people over and over again all that is "broken" in my body was really hard after a decade plus of hiding it.
Not being able to do a comparison of the old EMG vs the new was shocking, but has turned out to be a double edged sword overall. It would have been nice to have the comparison, since it was what started all this. But I am ok now that we can't do that. It definitely took the pressure off me of looking like a fool if it wasn't better. It made the entire focus, for me and my drs, about going forward instead of looking back, and that is probably the best approach any way.
I have to say before I end this post, the doctors and staff at Mayo Clinic, greatly impressed me this week. With the exception of one doctor (the medical geneticist) I was blown away by the level of detail, interest and focus the doctors had. How genuinely interested they were in finding out what is going on with my body. I am overall used to a medical system where doctors have seconds per client and are just assembly lining through appointments. Mayo is not like that, which is amazing for the 1000's of patients they treat a day. Every doctor spent between 1-4 hours with me, they listened, they probed, and most importantly they THOUGHT about what was being said. I never felt like they needed to prove how smart they were or how important they were because they were an MD. I never once felt like my weight was used as a reason not to find a real answer or that anything I said wasn't being heard.
I was also incredibly impressed with how all the doctors from different specialities all worked so seamlessly together. Again, no ego issues, no discounting of each others ideas. It felt like I had a team of professionals around me all with one goal, the same goal, finding an answer. It was really comforting and made this a very easy process overall.
I did have to laugh because as they were reading me each other's notes they all seemed to start with variations of "This is a fascinating situation" or "This is an incredibly interesting case". It made me laugh, I havent heard those words in 14 years. If it wasn't my body I would have to agree with them that what is going on (and what went on during that surgery) is an amazing puzzle!!!
Ok now the update, I had two more days of testing and consults on Thursday and Friday.
Thur
Medical Genetics consult
Long MRI (3 hours)
Fasting bloodwork
Fri
Internal Medicine consult
More bloodwork
Nerve conduction test
EMG (muscle testing)
As a result of these more tests/consults are scheduled for May 12th and 21st.
At this point I have some pieces of the puzzle and some new findings that I didn't have from 15 years ago, but wont have a big picture of it all pulled together til my follow up with Dr. Cross (the neurologist) on May 12th. So I am going to hold off posting much of what I learned until I know how it all fits together and what it means going forward.
I know the big question everyone wants to know (from the calls and emails) is how I am doing. I am really ok. I am kind of neutral on it all. Once I got past Tuesday, which broadsided me, it got easier. As one friend pointed out, I think Tuesday was so hard because it was the first time in 15 years I have spent that much time and energy focusing on my physical imperfections. Having to tell people over and over again all that is "broken" in my body was really hard after a decade plus of hiding it.
Not being able to do a comparison of the old EMG vs the new was shocking, but has turned out to be a double edged sword overall. It would have been nice to have the comparison, since it was what started all this. But I am ok now that we can't do that. It definitely took the pressure off me of looking like a fool if it wasn't better. It made the entire focus, for me and my drs, about going forward instead of looking back, and that is probably the best approach any way.
I have to say before I end this post, the doctors and staff at Mayo Clinic, greatly impressed me this week. With the exception of one doctor (the medical geneticist) I was blown away by the level of detail, interest and focus the doctors had. How genuinely interested they were in finding out what is going on with my body. I am overall used to a medical system where doctors have seconds per client and are just assembly lining through appointments. Mayo is not like that, which is amazing for the 1000's of patients they treat a day. Every doctor spent between 1-4 hours with me, they listened, they probed, and most importantly they THOUGHT about what was being said. I never felt like they needed to prove how smart they were or how important they were because they were an MD. I never once felt like my weight was used as a reason not to find a real answer or that anything I said wasn't being heard.
I was also incredibly impressed with how all the doctors from different specialities all worked so seamlessly together. Again, no ego issues, no discounting of each others ideas. It felt like I had a team of professionals around me all with one goal, the same goal, finding an answer. It was really comforting and made this a very easy process overall.
I did have to laugh because as they were reading me each other's notes they all seemed to start with variations of "This is a fascinating situation" or "This is an incredibly interesting case". It made me laugh, I havent heard those words in 14 years. If it wasn't my body I would have to agree with them that what is going on (and what went on during that surgery) is an amazing puzzle!!!
Thursday, April 22, 2010
No matter what goes on, I know I am blessed...
Tonight is not about me. It is about thanking all of you. All the wonderful, opinionated, honest people in my life. I have received a ton of emails, calls, notes and comments in the last few days. I am still trying to respond to all of them, but as I do that I just wanted to make sure you all knew how much you mean to me.
I love not only the amount of support my friends provide me but also the bluntness of your feedback. I have never been someone who only wanted people to agree with me. I believe we grow the most from being challenged, not from just being placated. I greatly value different points of view and luckily I am surrounded by a great many people who have no problem sharing their point of view. Please don't stop doing that.
I especially want to thank those people who have taken the risk of sharing their own personal stories with me. I know that is really hard to do in some cases, and your trust in me to protect those details and not to abuse them means a lot to me! I more than anyone know how scary it can be to put personal details out into the world and worry how someone might respond. Thank you for believing in me enough to feel you can share yourselves.
I am very grateful to each of you for being part of my life!
With lots of love!
I love not only the amount of support my friends provide me but also the bluntness of your feedback. I have never been someone who only wanted people to agree with me. I believe we grow the most from being challenged, not from just being placated. I greatly value different points of view and luckily I am surrounded by a great many people who have no problem sharing their point of view. Please don't stop doing that.
I especially want to thank those people who have taken the risk of sharing their own personal stories with me. I know that is really hard to do in some cases, and your trust in me to protect those details and not to abuse them means a lot to me! I more than anyone know how scary it can be to put personal details out into the world and worry how someone might respond. Thank you for believing in me enough to feel you can share yourselves.
I am very grateful to each of you for being part of my life!
With lots of love!
Update from Mayo...we won't ever have the answer I came for
Greetings from another day at the Mayo Clinic. I tried to come into today in a better place than I was last night, I knew that mood was not serving me well. So I tried to give myself a pep talk and be ok with it all, I was doing an alright job with that, but hit another road block this morning.
When I arrived this morning they gave me a copy of my records that the hospital in Syracuse had finally provided. In great big bold letters on the fax cover page it said "THE EMG LAB KEPT THEIR OWN RECORDS THEN AND DO NOT KEEP RECORDS AS LONG AS WE DO AND WE HAVE NO COPIES OF THE EMGs".
In other words, the key data needed for comparison is no long available any where and we wont be able to do the comparison. So the question I came to answer will never be answered.
My reaction, I still think I am somewhat in disbelief (I keep re-reading the piece of paper). For all the possibilities I considered, finding out it was better, worse or the same, I never considered we wouldnt have any answer or any ability to get the answer.
I am trying VERY hard not to slip into seeing this whole experience as a waste and am pushing myself to finish out all the suggested testing, so at least we have a baseline for the future and maybe will have some answers to other questions, but would be lying if I said I was anything other than crushed at this turn. I had built my nerve up so long to find this answer and now to know we can never know is just heartbreaking for me.
When I arrived this morning they gave me a copy of my records that the hospital in Syracuse had finally provided. In great big bold letters on the fax cover page it said "THE EMG LAB KEPT THEIR OWN RECORDS THEN AND DO NOT KEEP RECORDS AS LONG AS WE DO AND WE HAVE NO COPIES OF THE EMGs".
In other words, the key data needed for comparison is no long available any where and we wont be able to do the comparison. So the question I came to answer will never be answered.
My reaction, I still think I am somewhat in disbelief (I keep re-reading the piece of paper). For all the possibilities I considered, finding out it was better, worse or the same, I never considered we wouldnt have any answer or any ability to get the answer.
I am trying VERY hard not to slip into seeing this whole experience as a waste and am pushing myself to finish out all the suggested testing, so at least we have a baseline for the future and maybe will have some answers to other questions, but would be lying if I said I was anything other than crushed at this turn. I had built my nerve up so long to find this answer and now to know we can never know is just heartbreaking for me.
Wednesday, April 21, 2010
Hold the Mayo.............not in a good place.............
I was just called out by a friend on my last post about Mayo, she said it was a cop out, and she was probably right. I had promised to be honest with this blog, but just in a bad place today and figured it was better not sharing it. I feel really ashamed with how I feel right now, as I know when I look back in a month or a year it will have all turned out good and I will feel stupid for where I am at right now. But at this moment it doesn’t feel good and I am really struggling. Let me back up and explain why…….
Ok first of all, why I am doing the Mayo thing in the first place, or more appropriately what I expected or hoped to get out of it. I went into this with one goal, finding out if there was any marked improvement in the nerve function in my right side and if there was to understand how to continue that progress. I expected the testing would be pretty simple, another EMG/Nerve Conduction test and comparing that against the old one. I expected this little because when this happened 14 years ago no one had answers on exactly what the damage was and I had long ago accepted that I would live the rest of my life only knowing when it happened and with the assumptions that it was all from the shunt pulling out of my spine. I gave up over a decade ago on any more understanding than that. I had moved on. I have spent the last 5 months with Gui doing everything I can to get what I can out of the body I have. In the process I found a great level of confidence in what I could do with what I had. I can honestly say there were moments in the last few months, and especially in Israel this past trip, where I even forget I was damaged goods! I saw my body as functional for the first time in a long time, and felt secure that others did too. It was a great feeling and something I had become really comfortable with. I thought I had engrained it, I was wrong, so wrong.
Let me explain a little about the Mayo Clinic before I go any further. If I wasn’t the patient in all this, I have to tell you I would be standing in awe of the system at Mayo. Talk about efficiency, it’s amazing. Essentially what happens is you start with meeting your dr (in this case Dr Cross, who I had not met before). After a lengthy meeting with the Dr. (I was shocked how much time she spent with me, with an institution as well known and famous as Mayo I expected 5 minutes with a Dr who thought they were way too important to waste much time on me, I was wrong. She was amazing and was really interested in what was going on) a plan is developed. This plan involves all the tests and other doctors they want you to see. And you start seeing them IMMEDIALY. The plan includes appointments strung out over the next few days. You then go on what feels a lot like a scavenger hunt, moving from one place to another in this huge clinic, which is spread out all over the city of Rochester, MN. You then end up with a follow up appointment back with your doctor (mine is May 12th) to go over all the results and findings.
I mentioned efficiency, this is a huge clinic, they see thousands of people a day, but what I was struck by is at not one of my appointments did I wait more than 5 minutes in a waiting room. For as full as the waiting rooms were they just keep people moving. On day one I had blood work, EKG, xrays, urinalysis and an MRI. I have two more days of testing coming up. Still coming up I have medical genetics testing, fasting blood work, a 3 hour MRI (to look at my full brain and spine and all the arteries and veins), a consult with a neurosurgeon, a consult with an internist, an EMG (muscular and nerve testing).
Obviously this is way more than I expected, and that is why my confidence in my body started to fall apart. Dr Cross did not come at this with just the “let’s compare” I was ready for. She from moment one wanted to find the why. She wanted to know exactly what had gone on. Especially since her evaluation of my body confirmed something I have thought all along (but never said to her), that for where the damage is theorized to be (lumbar spine nerve roots) ½ of my symptoms (face, arms and torso) make NO sense. There is definitely root damage, hence the drop foot and some of my symptoms, but there has to be more. Her working theory is that I have multiple issues going on, and that the none leg stuff may be related more to an issue with my spinal cord than the nerve root damage.
All in all, this is great, don’t get me wrong. I would love to have answers. But I have to admit opening that door did me in. I have coped, I have accepted and now to have to wonder and face it all again just threw me for a loop I wasn’t ready for. I was totally jarred by one of her comments as she was watching me walk. She made the suggestion that I might want to consider wearing a leg brace again to deal with the drop foot. I know her intentions were positive, but it wasn’t something I was ok hearing. I gave up the brace a decade ago because of the stigma of using it (not to mention it was annoying) but to hear the person who I had hoped would tell me how to get better start at that spot broke my heart. I was not ready to have to face being disabled again and it hit me like cold water.
The rest of the day just re-enforced how 15 years has changed really little, and each appointment cracked my confidence a little more. By the time we got to the MRI I was fully shattered. I have HORRIBLE veins. I have since my years on prednisone and I had really hoped in 15 years they had gotten a little better. I was optimistic when the person drawing my blood got it on the first try, obviously that was a fluke. An hour was spent with 4 people trying 8 times to get an IV in me for contrast for the MRI. It was just like it was back in the 90’s when they used to have to call the surgeons to start a line or consider a central line (the conversation yesterday was we were one stick from inserting a PICC line).
I know I shouldn’t be where I am at today with all this, but if I am honest (what I was told I wasn’t being in my previous post). The last 36 hours has shaken me to my core. It has me wondering why I am wasting time and money with a trainer if I am going to end up back in a leg brace and if all that work has left my body just as broken. Don’t get me wrong, I know I have lost the 70 lbs. I haven’t lost sight of that. But the weight is just a side effect of what I really thought I was getting out of training, and today I just don’t know.
It is hard to admit but I walked into the club tonight (after avoiding going to work out today) and I felt as out of place and inadequate being there as I did when I joined in November. For the first time in months I felt like everyone was staring at me and laughing at me. I was supposed to be working out with Gui’s boss while he is away and I just can’t do it. I cancelled all my sessions with her. Some of that was because of schedule conflict issues with Mayo and work, but I know had TB been around I would have worked to find a solution. I just don’t feel like I can handle how inadequate I feel about my body right now with her or anyone. Part of me wonders what is the point anyway. Am I kidding myself that the working out is going to make any of this any better? Have I just been playing a head game with myself the last 5 months? If I am totally honest, I am not even sure I want to go back to training when TB gets back, that is how far I have been shaken. I just don’t know if it’s worth the effort any more. I thought I had come so far and to hear the doctor’s first suggestion be to go back to the leg brace has sent me down a slide I had never expected.
I will say I now realize scheduling this while TB (Gui) was away was one of the stupider things I have done. I never imagined how much this would knock me backwards and while him being here would have done nothing to prevent that, having the person around who can usually successfully kick me in the butt when I start to crumble related to my body would have been at least a chance to pull myself out of this hole. Instead I feel like I have just curled up in the bottom of it and don’t know where to turn or whether to just stay here and accept it all as the way it is going to be.
Total truth, a big part of me has considered just scrapping the rest of the testing even at Mayo but I am forcing myself to go ahead. The damage to my confidence has already been done so I might as well keep walking through the door I opened and maybe get some answers. That is part of what is also eating at me, what if I have done all this, put myself through all this and I hear on May 12th, well we really don’t know…….I just don’t know if I can handle that.
But before I can worry about that I need to get through these next two days of testing. Tomorrow is going to be the hardest, another MRI (I am very claustrophobic), more blood draws and more IV’s. Can’t say I am looking forward to it in the least.
Ok first of all, why I am doing the Mayo thing in the first place, or more appropriately what I expected or hoped to get out of it. I went into this with one goal, finding out if there was any marked improvement in the nerve function in my right side and if there was to understand how to continue that progress. I expected the testing would be pretty simple, another EMG/Nerve Conduction test and comparing that against the old one. I expected this little because when this happened 14 years ago no one had answers on exactly what the damage was and I had long ago accepted that I would live the rest of my life only knowing when it happened and with the assumptions that it was all from the shunt pulling out of my spine. I gave up over a decade ago on any more understanding than that. I had moved on. I have spent the last 5 months with Gui doing everything I can to get what I can out of the body I have. In the process I found a great level of confidence in what I could do with what I had. I can honestly say there were moments in the last few months, and especially in Israel this past trip, where I even forget I was damaged goods! I saw my body as functional for the first time in a long time, and felt secure that others did too. It was a great feeling and something I had become really comfortable with. I thought I had engrained it, I was wrong, so wrong.
Let me explain a little about the Mayo Clinic before I go any further. If I wasn’t the patient in all this, I have to tell you I would be standing in awe of the system at Mayo. Talk about efficiency, it’s amazing. Essentially what happens is you start with meeting your dr (in this case Dr Cross, who I had not met before). After a lengthy meeting with the Dr. (I was shocked how much time she spent with me, with an institution as well known and famous as Mayo I expected 5 minutes with a Dr who thought they were way too important to waste much time on me, I was wrong. She was amazing and was really interested in what was going on) a plan is developed. This plan involves all the tests and other doctors they want you to see. And you start seeing them IMMEDIALY. The plan includes appointments strung out over the next few days. You then go on what feels a lot like a scavenger hunt, moving from one place to another in this huge clinic, which is spread out all over the city of Rochester, MN. You then end up with a follow up appointment back with your doctor (mine is May 12th) to go over all the results and findings.
I mentioned efficiency, this is a huge clinic, they see thousands of people a day, but what I was struck by is at not one of my appointments did I wait more than 5 minutes in a waiting room. For as full as the waiting rooms were they just keep people moving. On day one I had blood work, EKG, xrays, urinalysis and an MRI. I have two more days of testing coming up. Still coming up I have medical genetics testing, fasting blood work, a 3 hour MRI (to look at my full brain and spine and all the arteries and veins), a consult with a neurosurgeon, a consult with an internist, an EMG (muscular and nerve testing).
Obviously this is way more than I expected, and that is why my confidence in my body started to fall apart. Dr Cross did not come at this with just the “let’s compare” I was ready for. She from moment one wanted to find the why. She wanted to know exactly what had gone on. Especially since her evaluation of my body confirmed something I have thought all along (but never said to her), that for where the damage is theorized to be (lumbar spine nerve roots) ½ of my symptoms (face, arms and torso) make NO sense. There is definitely root damage, hence the drop foot and some of my symptoms, but there has to be more. Her working theory is that I have multiple issues going on, and that the none leg stuff may be related more to an issue with my spinal cord than the nerve root damage.
All in all, this is great, don’t get me wrong. I would love to have answers. But I have to admit opening that door did me in. I have coped, I have accepted and now to have to wonder and face it all again just threw me for a loop I wasn’t ready for. I was totally jarred by one of her comments as she was watching me walk. She made the suggestion that I might want to consider wearing a leg brace again to deal with the drop foot. I know her intentions were positive, but it wasn’t something I was ok hearing. I gave up the brace a decade ago because of the stigma of using it (not to mention it was annoying) but to hear the person who I had hoped would tell me how to get better start at that spot broke my heart. I was not ready to have to face being disabled again and it hit me like cold water.
The rest of the day just re-enforced how 15 years has changed really little, and each appointment cracked my confidence a little more. By the time we got to the MRI I was fully shattered. I have HORRIBLE veins. I have since my years on prednisone and I had really hoped in 15 years they had gotten a little better. I was optimistic when the person drawing my blood got it on the first try, obviously that was a fluke. An hour was spent with 4 people trying 8 times to get an IV in me for contrast for the MRI. It was just like it was back in the 90’s when they used to have to call the surgeons to start a line or consider a central line (the conversation yesterday was we were one stick from inserting a PICC line).
I know I shouldn’t be where I am at today with all this, but if I am honest (what I was told I wasn’t being in my previous post). The last 36 hours has shaken me to my core. It has me wondering why I am wasting time and money with a trainer if I am going to end up back in a leg brace and if all that work has left my body just as broken. Don’t get me wrong, I know I have lost the 70 lbs. I haven’t lost sight of that. But the weight is just a side effect of what I really thought I was getting out of training, and today I just don’t know.
It is hard to admit but I walked into the club tonight (after avoiding going to work out today) and I felt as out of place and inadequate being there as I did when I joined in November. For the first time in months I felt like everyone was staring at me and laughing at me. I was supposed to be working out with Gui’s boss while he is away and I just can’t do it. I cancelled all my sessions with her. Some of that was because of schedule conflict issues with Mayo and work, but I know had TB been around I would have worked to find a solution. I just don’t feel like I can handle how inadequate I feel about my body right now with her or anyone. Part of me wonders what is the point anyway. Am I kidding myself that the working out is going to make any of this any better? Have I just been playing a head game with myself the last 5 months? If I am totally honest, I am not even sure I want to go back to training when TB gets back, that is how far I have been shaken. I just don’t know if it’s worth the effort any more. I thought I had come so far and to hear the doctor’s first suggestion be to go back to the leg brace has sent me down a slide I had never expected.
I will say I now realize scheduling this while TB (Gui) was away was one of the stupider things I have done. I never imagined how much this would knock me backwards and while him being here would have done nothing to prevent that, having the person around who can usually successfully kick me in the butt when I start to crumble related to my body would have been at least a chance to pull myself out of this hole. Instead I feel like I have just curled up in the bottom of it and don’t know where to turn or whether to just stay here and accept it all as the way it is going to be.
Total truth, a big part of me has considered just scrapping the rest of the testing even at Mayo but I am forcing myself to go ahead. The damage to my confidence has already been done so I might as well keep walking through the door I opened and maybe get some answers. That is part of what is also eating at me, what if I have done all this, put myself through all this and I hear on May 12th, well we really don’t know…….I just don’t know if I can handle that.
But before I can worry about that I need to get through these next two days of testing. Tomorrow is going to be the hardest, another MRI (I am very claustrophobic), more blood draws and more IV’s. Can’t say I am looking forward to it in the least.
Update on Mayo.........
Thank you all for the great notes and well wishes. I know I haven't posted many details, but promise I will, it probably wont be this week though. The whole thing has gotten bigger than I expected and just trying to slug through it. I have more tests Thur and Fri and probably wont have many results until after May 12th. I promise to write about the experience once I am through all the testing.
Thanks for caring.
Thanks for caring.
Help Wanted: Responsible Adult.....
This is one of those posts I feel like needs a disclaimer. I KNOW everything is going to be great, that I am doing this for the right reasons and all that other stuff. I just need to vent/download because I am stressing out!!!!! So please just take what I say as that, it is just a rant to get it off my chest, I am really ok though.......
There are very, VERY, VERY few times I wish I was not single. I love my life, I love the freedom being single gives me, I also know that marriage is a major committment to selflessness (if done right) that I probably wouldn't be very good at. Single has been a choice for me as much as anything.
But I have to say there is one time in my life that everytime I get here I really do envy my married friends. Being sick, medical care and dealing with the medical system alone is so much harder and very frustrating and to be honest, quite lonely!!!!!
I found myself sitting at Mayo yesterday in tears at one point just from being overwhelmed. I looked around me and saw all these other people with someone with them and it hit me again, this is the one time I wish I was married. It would be so nice just to have someone else who could share some of the burden of figuring out logistics, driving, dealing with stupid details like finding food between appts so I could have just concentrated on being the patient. I didnt want to have to be the logical problem solver in that moment, I wanted someone else to make it all right. I remember these feelings from when I dealt with all this back in the 90's too. There are certain things people shouldn't have to do alone, this is one of them!
It really hit me when we got to the MRI (the first of two this week) and I couldn't have any kind of sedation because I was there alone and you can't drive afterwards. I am going to face a similar situation tomorrow and then trying to drive after the EMG on Friday.
I know I have friends around me that would help out if I asked (some have even offered) but my past experience has told me that comes with more strings and after effects than it is usually worth. It means asking someone else to take time out of their life (in this case time off work) be away from their lives and somehow always comes back to bite me later. For those that are married, as my friend put it yesterday, you at least have someone who is "legally obligated to help out even if they don't like it".
Not looking forward to more days of this this week!!!!!
There are very, VERY, VERY few times I wish I was not single. I love my life, I love the freedom being single gives me, I also know that marriage is a major committment to selflessness (if done right) that I probably wouldn't be very good at. Single has been a choice for me as much as anything.
But I have to say there is one time in my life that everytime I get here I really do envy my married friends. Being sick, medical care and dealing with the medical system alone is so much harder and very frustrating and to be honest, quite lonely!!!!!
I found myself sitting at Mayo yesterday in tears at one point just from being overwhelmed. I looked around me and saw all these other people with someone with them and it hit me again, this is the one time I wish I was married. It would be so nice just to have someone else who could share some of the burden of figuring out logistics, driving, dealing with stupid details like finding food between appts so I could have just concentrated on being the patient. I didnt want to have to be the logical problem solver in that moment, I wanted someone else to make it all right. I remember these feelings from when I dealt with all this back in the 90's too. There are certain things people shouldn't have to do alone, this is one of them!
It really hit me when we got to the MRI (the first of two this week) and I couldn't have any kind of sedation because I was there alone and you can't drive afterwards. I am going to face a similar situation tomorrow and then trying to drive after the EMG on Friday.
I know I have friends around me that would help out if I asked (some have even offered) but my past experience has told me that comes with more strings and after effects than it is usually worth. It means asking someone else to take time out of their life (in this case time off work) be away from their lives and somehow always comes back to bite me later. For those that are married, as my friend put it yesterday, you at least have someone who is "legally obligated to help out even if they don't like it".
Not looking forward to more days of this this week!!!!!
Monday, April 19, 2010
Today's post brought to you by the letters P, R, O, U and D....
It amazes me sometimes how much power a single word can have. I had never given the word "proud" a whole lot of thought, but in the last few weeks it seems to be a recurrning theme.
Proud is a word we often long to hear from other people, it tells us we have met or exceeded expectations, but more importantly we as a society seem to also tie it to acceptance and in some cases even love. For all the words that can be used proud seems to be the one with the highest value when it comes to measuring ourselves in others eyes, and I find that interesting. Especially since it seems to be one of the least used words in our language.
I can't say I ever remember even hearing the word in our home growing up. My parents were more the kind to ask why you hadn't reached the next milestone instead of stopping to recognize what you had done. Why wasn't the A and A+, why wasnt the 99 a 100, why did you hit a single when you should have gotten a double out of it. Anyone need to wondering why I am as obsessed as I am need not read far into that to find the answer *smile*, good enough was never good enough.
Growing up I would have told you it was my parents, that they were screwed up and just didn't know how to express themselves. I would have guessed everyone else's parents bathed them in how proud they were of them. I am learning as an adult, that is not the case. More and more people have commented to me lately about how their parents never said it to them either (one such conversation recently is what got me thinking about the word and lead to this post).
I also can't say I remember any of my teachers using the word either, although I can tell you at least one teacher growing up who I know was proud of me, he showed it in other ways, but I don't recall ever hearing it said. I was shown I had accomplished great things with grades, with awards, with scholarships, with honor society inductions, but never the word proud, the one word I probably wanted to hear more than anything. That strikes me as so odd looking back. Why is it so hard for us to say to each other?
I can't say I remember hearing the word in my adult life either until the last six months. For all I have been through, for all I have accomplished professionally, can't say I recall hearing it. We tell each other we are doing well as adults with high fives, with raises, with promotions, but the word just seems to be missing. Yet the desire for it is still there.
I have to admit hearing it over and over again in the last few months about my weight loss and life style changes has been one of the happiest parts about it. Knowing that I have finally found that acceptance that the little girl inside of me longed for all those years. I have to admit sometimes it is a double edged sword though. I always seem to pause afterwards and wonder how all the things I have done in my life before havent measured up to weight loss and changing my life. To me this seems so small in comparison to the things I have done in my career, but this has gotten way more attention.
I have an interesting theory on that at this point, and it is still a work in progress. But my new working theory is that, others can't be proud of us until we find a place where we are proud of ourselves. That this is an inside out thing, not the other way around like most of us expect it to be.
I can genuinely say that this is the first point in my life that I feel pride in myself. For all I have accomplished in my career, my life, my philanthropic work this is the first time I have ALLOWED myself to be proud of myself. And I say allowed very purposelly.
I was raised to believe pride in oneself is a bad thing. That it is the opposite of being humble. That it is selfish and bragging and inappropriate. That bring proud of yourself makes you a bad person with an overblown ego. This is another one of those things I am working really hard to unlearn. I am starting to accept that it is healthy to be proud of yourself and the fruits of your labor, that this is not a form of being egotistic and is instead a sign of self respect.
Learning to be proud of myself, and being ok when others tell me they are proud of me lately has been a real growth step. I now take great joy in my friends being happy of my success, and my greatest joy has come in hearing them tell OTHERS what I have accomplished. One of my best memories I am taking away from Israel is my shabbat dinner at Laura and Avi's. For as well as I have gotten to know Laura, Avi still is someone I am trying to get to know. So I was totally shocked when he pointed out to the other dinner guest how much weight I have lost and did it with a great amount of pride. It really made me smile and is something I wont soon forget.
I have to say, my greatest moment of pride yet has been related to the picture at the top of this post. It was part of a birthday card this year from my brother, the one family member I can say I truly love and have our whole lives. He sent me a very simple birthday card but in his note he put how proud of me he was. That meant more to me than any present anyone could send!!!! I am really proud of you too Thom!!!!!
Proud is a word we often long to hear from other people, it tells us we have met or exceeded expectations, but more importantly we as a society seem to also tie it to acceptance and in some cases even love. For all the words that can be used proud seems to be the one with the highest value when it comes to measuring ourselves in others eyes, and I find that interesting. Especially since it seems to be one of the least used words in our language.
I can't say I ever remember even hearing the word in our home growing up. My parents were more the kind to ask why you hadn't reached the next milestone instead of stopping to recognize what you had done. Why wasn't the A and A+, why wasnt the 99 a 100, why did you hit a single when you should have gotten a double out of it. Anyone need to wondering why I am as obsessed as I am need not read far into that to find the answer *smile*, good enough was never good enough.
Growing up I would have told you it was my parents, that they were screwed up and just didn't know how to express themselves. I would have guessed everyone else's parents bathed them in how proud they were of them. I am learning as an adult, that is not the case. More and more people have commented to me lately about how their parents never said it to them either (one such conversation recently is what got me thinking about the word and lead to this post).
I also can't say I remember any of my teachers using the word either, although I can tell you at least one teacher growing up who I know was proud of me, he showed it in other ways, but I don't recall ever hearing it said. I was shown I had accomplished great things with grades, with awards, with scholarships, with honor society inductions, but never the word proud, the one word I probably wanted to hear more than anything. That strikes me as so odd looking back. Why is it so hard for us to say to each other?
I can't say I remember hearing the word in my adult life either until the last six months. For all I have been through, for all I have accomplished professionally, can't say I recall hearing it. We tell each other we are doing well as adults with high fives, with raises, with promotions, but the word just seems to be missing. Yet the desire for it is still there.
I have to admit hearing it over and over again in the last few months about my weight loss and life style changes has been one of the happiest parts about it. Knowing that I have finally found that acceptance that the little girl inside of me longed for all those years. I have to admit sometimes it is a double edged sword though. I always seem to pause afterwards and wonder how all the things I have done in my life before havent measured up to weight loss and changing my life. To me this seems so small in comparison to the things I have done in my career, but this has gotten way more attention.
I have an interesting theory on that at this point, and it is still a work in progress. But my new working theory is that, others can't be proud of us until we find a place where we are proud of ourselves. That this is an inside out thing, not the other way around like most of us expect it to be.
I can genuinely say that this is the first point in my life that I feel pride in myself. For all I have accomplished in my career, my life, my philanthropic work this is the first time I have ALLOWED myself to be proud of myself. And I say allowed very purposelly.
I was raised to believe pride in oneself is a bad thing. That it is the opposite of being humble. That it is selfish and bragging and inappropriate. That bring proud of yourself makes you a bad person with an overblown ego. This is another one of those things I am working really hard to unlearn. I am starting to accept that it is healthy to be proud of yourself and the fruits of your labor, that this is not a form of being egotistic and is instead a sign of self respect.
Learning to be proud of myself, and being ok when others tell me they are proud of me lately has been a real growth step. I now take great joy in my friends being happy of my success, and my greatest joy has come in hearing them tell OTHERS what I have accomplished. One of my best memories I am taking away from Israel is my shabbat dinner at Laura and Avi's. For as well as I have gotten to know Laura, Avi still is someone I am trying to get to know. So I was totally shocked when he pointed out to the other dinner guest how much weight I have lost and did it with a great amount of pride. It really made me smile and is something I wont soon forget.
I have to say, my greatest moment of pride yet has been related to the picture at the top of this post. It was part of a birthday card this year from my brother, the one family member I can say I truly love and have our whole lives. He sent me a very simple birthday card but in his note he put how proud of me he was. That meant more to me than any present anyone could send!!!! I am really proud of you too Thom!!!!!
Saturday, April 17, 2010
Friends don't let friends vacation blenderless...
"This is where the rubber meets the road,
This is where the cream is gonna rise,
This is what you really didn't know,
This is where the truth don't lie!
You find out who you're friends are,
Somebody's gonna drop everything,
Run out and crank up their car,
Hit the gas get there fast,
Never stop to think 'what's in it for me' or 'it's way too far',
They just show on up,
with their big old heart,
You find out who you're friends are"
http://www.youtube.com/watch?v=vEN4o0Af_zE
Time for another thank you. I saved this one a few days. I wanted to know the end to the story, before I told the beginning. Now I can write the true thank you with all the gratitude it deserves.
So first my helping of crow, for all the freaking out I did earlier this week about feeling like I was gaining weight on vacation, in the end, I lost at least a pound while I was gone!!!! The trainer confirmed it yesterday. For as much as I panicked before going (to the point of almost cancelling) and was obsessing over the scale and sat in tears one morning in Tel Aviv, it all turned out perfectly.
That outcome has taught me two lessons....
1. I need to get better about being comfortable letting other people help me
2. I have to figure out how to chill on the number on the scale thing
Number 2 is a lot harder, so today is about lesson #1....friends and life being a team sport.
I have great friends, many of whom would give the shirt off their back for me. But despite that I have a really hard time letting them help me and an even harder time asking for help. I am used to being the "do-er" in the group. I am comfortable in that role. If someone needs something I am there, I handle it, to quote Nuk..."I'm Auntie Plan". Need a solution, I'm your girl!!! It is very hard for me to cede that role and let others come up with my plan. I have to really be in a bind before I reach out for help. And once I reach out to someone if I feel I have been shot down or they were put out, I never go back. It is a kind of vulnerability I struggle with daily.
Luckily I have a few friends who don't wait for permission to help, they know better, they just do! Laura Bialis-Vaknin is one of those people and especially was on this trip. If she hadn't been I probably never would have even made it to Israel let alone had the amazing trip I did.
I have mentioned Laura before in the blog. I met her a year ago on a UJC trip to Sderot. We were guests in her home. She is a film maker from Los Angelos who has made Aliyah to Israel. Laura is one of those people you just love to be around, she is fun, smart and just makes you laugh. She also has a heart of gold, whether it is for people, causes or animals! I consider myself very blessed to have her as friend! And still thank whatever fates brought her into my life.
Laura made this trip a "piece of cake" for me in so many ways related to food and exercise. First of all she pieced me back together after my pre-trip freak out about could I even handle this (while I was on a business trip and not handling well), she pre-shopped for me (almond milk, PB, almond butter) and she went to the hotel before I headed for Israel to make sure my room would have a fridge and to sent us a list of exercise equipment so the trainer could prep me for how to stay with my workouts. My favorite part of all, she showed up at the airport blender in hand so I could keep my eating on track. How many friends would do that for you??????????? True friendship always involves a blender in a foreign country I have learned *grin*.
Once I was there she not only was a great tour guide (Sderot and the animal hospital in Tel Aviv which was AWESOME) but she took me shopping at the shuk for great fruits and veggies (we never did find those plums) and made an amazing, healthy Shabbat dinner at her home (including my pumpkin things...sorry Avi *grin*). She was a phone call away (ok an email away) the day I felt over my head, and even scolded me for not calling for faster help. Bottom line I knew I wasn't in this alone and she would do anything possible to make this easier for me.
Letting her do all these things did not come easy or naturally for me. I hate being an imposition, but not once did she make me feel I was asking too much or was in the way. I have no doubt her help and support is why I didn't gain 10 lbs this trip and why I was able to come back right on track from where I left off.
Laura, I am so grateful to you for all you did for me, in the middle of a crazy time in your life. For your dear friendship, for your support and above all for your kitchen appliances. I love you my friend and I know that how successful my trip was is in large part thanks to you!!!! I miss you and can't wait to see you again, along with that new baby that is on the way.
PS...Avi, thanks for sharing her with all of us last week. Know it wasn't making your life any easier, but hope reading this you know how much she means to all of us and how valuable she was to me.
PSS...for those keeping track, with that additional one pound, I have now lost 72 pounds total and most importantly 45 lbs with the trainer in the last 20 weeks!!!!
This is where the cream is gonna rise,
This is what you really didn't know,
This is where the truth don't lie!
You find out who you're friends are,
Somebody's gonna drop everything,
Run out and crank up their car,
Hit the gas get there fast,
Never stop to think 'what's in it for me' or 'it's way too far',
They just show on up,
with their big old heart,
You find out who you're friends are"
http://www.youtube.com/watch?v=vEN4o0Af_zE
Time for another thank you. I saved this one a few days. I wanted to know the end to the story, before I told the beginning. Now I can write the true thank you with all the gratitude it deserves.
So first my helping of crow, for all the freaking out I did earlier this week about feeling like I was gaining weight on vacation, in the end, I lost at least a pound while I was gone!!!! The trainer confirmed it yesterday. For as much as I panicked before going (to the point of almost cancelling) and was obsessing over the scale and sat in tears one morning in Tel Aviv, it all turned out perfectly.
That outcome has taught me two lessons....
1. I need to get better about being comfortable letting other people help me
2. I have to figure out how to chill on the number on the scale thing
Number 2 is a lot harder, so today is about lesson #1....friends and life being a team sport.
I have great friends, many of whom would give the shirt off their back for me. But despite that I have a really hard time letting them help me and an even harder time asking for help. I am used to being the "do-er" in the group. I am comfortable in that role. If someone needs something I am there, I handle it, to quote Nuk..."I'm Auntie Plan". Need a solution, I'm your girl!!! It is very hard for me to cede that role and let others come up with my plan. I have to really be in a bind before I reach out for help. And once I reach out to someone if I feel I have been shot down or they were put out, I never go back. It is a kind of vulnerability I struggle with daily.
Luckily I have a few friends who don't wait for permission to help, they know better, they just do! Laura Bialis-Vaknin is one of those people and especially was on this trip. If she hadn't been I probably never would have even made it to Israel let alone had the amazing trip I did.
I have mentioned Laura before in the blog. I met her a year ago on a UJC trip to Sderot. We were guests in her home. She is a film maker from Los Angelos who has made Aliyah to Israel. Laura is one of those people you just love to be around, she is fun, smart and just makes you laugh. She also has a heart of gold, whether it is for people, causes or animals! I consider myself very blessed to have her as friend! And still thank whatever fates brought her into my life.
Laura made this trip a "piece of cake" for me in so many ways related to food and exercise. First of all she pieced me back together after my pre-trip freak out about could I even handle this (while I was on a business trip and not handling well), she pre-shopped for me (almond milk, PB, almond butter) and she went to the hotel before I headed for Israel to make sure my room would have a fridge and to sent us a list of exercise equipment so the trainer could prep me for how to stay with my workouts. My favorite part of all, she showed up at the airport blender in hand so I could keep my eating on track. How many friends would do that for you??????????? True friendship always involves a blender in a foreign country I have learned *grin*.
Once I was there she not only was a great tour guide (Sderot and the animal hospital in Tel Aviv which was AWESOME) but she took me shopping at the shuk for great fruits and veggies (we never did find those plums) and made an amazing, healthy Shabbat dinner at her home (including my pumpkin things...sorry Avi *grin*). She was a phone call away (ok an email away) the day I felt over my head, and even scolded me for not calling for faster help. Bottom line I knew I wasn't in this alone and she would do anything possible to make this easier for me.
Letting her do all these things did not come easy or naturally for me. I hate being an imposition, but not once did she make me feel I was asking too much or was in the way. I have no doubt her help and support is why I didn't gain 10 lbs this trip and why I was able to come back right on track from where I left off.
Laura, I am so grateful to you for all you did for me, in the middle of a crazy time in your life. For your dear friendship, for your support and above all for your kitchen appliances. I love you my friend and I know that how successful my trip was is in large part thanks to you!!!! I miss you and can't wait to see you again, along with that new baby that is on the way.
PS...Avi, thanks for sharing her with all of us last week. Know it wasn't making your life any easier, but hope reading this you know how much she means to all of us and how valuable she was to me.
PSS...for those keeping track, with that additional one pound, I have now lost 72 pounds total and most importantly 45 lbs with the trainer in the last 20 weeks!!!!
Friday, April 16, 2010
The answer has already been given, now it's time to ask the question...
"She said, I'll walk.
Please hold my hand.
I know that this will hurt
I know you understand.
Please don't cry.
This is already hard.
Let's go, don't worry.
I'll walk."
Bucky Covington http://www.youtube.com/watch?v=muXJK0mrvgs
The hills of Jaffa (Yafo) seem a million miles ago already. It almost feels like I fell asleep, dreamed of Israel and just woke up. Now its back to the day to day and the routine. Although for me that routine is going to be short lived. Next week I face the next great adventure, a trip to the Mayo Clinic.
This was a trip I was really excited about, a chance to have the nerve damage re-evaluated and find out if there was any significant changes we could capitalize on to help me gain greater mobility and use of my right side. Now in ways it feels irrelevant.
For those that haven't been reading since the start of the blog, just a quick explanation. In 1996 as the result of a botched lumbo-peritoneal shunt surgery I was paralyzed on my right side (head to toe). The rehabilition involved physical and occupational therapy and progression from a wheel chair to a walker to a crutches to a cane to a leg brace. Eventually I learned to compensate enough to be "functional" and mask my limitations pretty well to most people. Anyone who didn't spend much time with me might notice I walked a little funny (I have severe drop foot on the right side so cant pull my foot up and so I step different than most) but that is about it. Covering the issue was a lot of work but something I felt was important, being judged on my weaknesses doesnt work well for me.
But the cover was a mask, no more. On a day to day basis the damage had major impacts on my life. I had never been thin, but the loss of mobility caused my weight to balloon by over 130 lbs, I have fallen enough times to break every rib, my foot, my hands and probably lots of other bones I never had looked at. I have twice had 3rd degree burns on my torso because I couldn't feel the heat from a blow dryer running on the counter. I have had massive skin issues on my right side because I couldn't feel injuries. My world became pretty closed in because of fear of not being able to keep up and the practical issues of walking and stairs and hills.
It sounds over dramatic to say, but I had really written my body off. I worked on cultivating my mind and building myself a wonderful career, but had long ago given up on regaining much of what I had physically prior to getting sick and the surgery.
That all changed when I started working with the trainer at the end of 2009. I went into that with one goal, lose weight. I never had any expectation that any of the surgery damage would change. It was 14 years ago. The doctors had told me any improvement would come in the first 2-3 years max, so I had given up hoping and accepted the situation a decade ago. Nerve regeneration doesn't happen if you read the literature and I had faced that reality a long time ago.
I wish I had better documented when this all started, but probably 2 1/2 months into working with the trainer something weird started happening. It was so out of the realm of possiblity I didn't even notice it at first. Very small areas that I hadn't felt in years started having some sensation (able to feel pressure or pins and needles). The feeling would be, and is still, fleeting but it was still enough to try to at least consider what was going on.
I have to admit if it hadn't been for Gui and his ability to somehow make me believe anything is doable, I probably would have kept the changes to myself and never mentioned them to anyone. There is a state of mind you develop after years with a rare chronic illness. You begin to doubt yourself and your perception of what your body is doing. It is a weird way to live, because in one sense I have found myself and others who face a lot of medical challenges become very tuned into our bodies and what is right and wrong and when something is different. But at the same time, you don't trust that perception because unfortunately many doctors handle diseases they don't understand by convincing the patient it is all in their head or psychological. So you learn not to share a lot of what you are feeling or think is going on unless you are 10000000000% positive because the feeling of being doubted or thought crazy just isn't worth the benefit...life is all about the cost to benefit ratio afterall *smile*.
I am particularly careful of this when it comes to the nerve damage. From the moment I woke up in the operating room there were people, particularly my neurosurgeon, who wanted this all to be in my head. It was easier to label me as crazy than to admit his flaws and his mistakes (which he to this day has never done).It took me days of trying to convince him and finally my neurologist intervening for me to be believed and testing to be done to prove yes indeed there was real physical damage and this wasn't some head game or stress.
All that old baggage and those fears were a lot of why I worked so hard over the years to hide this part of my life, and why reopening it now is so hard. My first reaction when I realized I was noticing changes was to question myself and if I was just imagining the changes. It took me weeks before I mentioned it to the trainer and then my previous neurologist. There is a big part of me that fears going back to that place of having people look at me like I am crazy instead of hearing what might be going on because it is so far outside the norm. It has been 14 years since the nerve damage, there is no logically reason for a change now. Weight loss does not impact nerve funcation and I was thinner when it happened than I am now!
But luckily I have some great people in my life, including my previous neurologist and Gui, and both convinced me that this should get looked at again. That it would be stupid to pass up a chance for improvement over these fears. So with Debbie's help I am now scheduled to see a specialist at Mayo Clinic next week.
When we scheduled the appt, I thought the answer I was going to get, good or bad really mattered. That it would be life altering either way. But I realized last week in Israel, it really doesn't matter what the doctors say, it doesn't matter what the tests show. It also doesn't matter if there are changes or the differences are all in my head, because there ARE changes that no test can verify. Last week I walked on the beach, I climbed hills, I kept up, I was like everyone else. That was all I was hoping the tests would tell me I could be some day, but I don't need an EMG to tell me that any more. I found that answer on my own.
I have to admit, as much as I can sit here and say the answer doesn't matter, there is still part of me that is nervous. I am worried that if the tests come back the same as they were in 1996 if I am going to be able to keep the focus that I have right now that they don't matter. That whatever the doctor says doesn't define what I can make my body do or how much more improvement I can make. That the last almost 5 months have had nothing to do with results on a piece of paper, and neither will the next 5 months! Will I have the same drive and desire to keep going with my training and all the changes I am making if I am told nothing is any different? I would like to hope I would, but I remember how powerful the disappointment of bad test results can be.
It's funny as I just re-read all I wrote, I see myself doing it already. I am already bracing for the bad, for not being believed, for what I KNOW has changed in my body to be discounted. I KNOW I am feeling things I didn't before, there is no doubt what so ever. Yet I am already figuring out how to handle being told it isn't real. I really hoping opening this can of worms is worth it. It seemed like such a good idea when we scheduled this, now I wonder if some ghosts shouldn't have been left in the closet!!!!
Please hold my hand.
I know that this will hurt
I know you understand.
Please don't cry.
This is already hard.
Let's go, don't worry.
I'll walk."
Bucky Covington http://www.youtube.com/watch?v=muXJK0mrvgs
The hills of Jaffa (Yafo) seem a million miles ago already. It almost feels like I fell asleep, dreamed of Israel and just woke up. Now its back to the day to day and the routine. Although for me that routine is going to be short lived. Next week I face the next great adventure, a trip to the Mayo Clinic.
This was a trip I was really excited about, a chance to have the nerve damage re-evaluated and find out if there was any significant changes we could capitalize on to help me gain greater mobility and use of my right side. Now in ways it feels irrelevant.
For those that haven't been reading since the start of the blog, just a quick explanation. In 1996 as the result of a botched lumbo-peritoneal shunt surgery I was paralyzed on my right side (head to toe). The rehabilition involved physical and occupational therapy and progression from a wheel chair to a walker to a crutches to a cane to a leg brace. Eventually I learned to compensate enough to be "functional" and mask my limitations pretty well to most people. Anyone who didn't spend much time with me might notice I walked a little funny (I have severe drop foot on the right side so cant pull my foot up and so I step different than most) but that is about it. Covering the issue was a lot of work but something I felt was important, being judged on my weaknesses doesnt work well for me.
But the cover was a mask, no more. On a day to day basis the damage had major impacts on my life. I had never been thin, but the loss of mobility caused my weight to balloon by over 130 lbs, I have fallen enough times to break every rib, my foot, my hands and probably lots of other bones I never had looked at. I have twice had 3rd degree burns on my torso because I couldn't feel the heat from a blow dryer running on the counter. I have had massive skin issues on my right side because I couldn't feel injuries. My world became pretty closed in because of fear of not being able to keep up and the practical issues of walking and stairs and hills.
It sounds over dramatic to say, but I had really written my body off. I worked on cultivating my mind and building myself a wonderful career, but had long ago given up on regaining much of what I had physically prior to getting sick and the surgery.
That all changed when I started working with the trainer at the end of 2009. I went into that with one goal, lose weight. I never had any expectation that any of the surgery damage would change. It was 14 years ago. The doctors had told me any improvement would come in the first 2-3 years max, so I had given up hoping and accepted the situation a decade ago. Nerve regeneration doesn't happen if you read the literature and I had faced that reality a long time ago.
I wish I had better documented when this all started, but probably 2 1/2 months into working with the trainer something weird started happening. It was so out of the realm of possiblity I didn't even notice it at first. Very small areas that I hadn't felt in years started having some sensation (able to feel pressure or pins and needles). The feeling would be, and is still, fleeting but it was still enough to try to at least consider what was going on.
I have to admit if it hadn't been for Gui and his ability to somehow make me believe anything is doable, I probably would have kept the changes to myself and never mentioned them to anyone. There is a state of mind you develop after years with a rare chronic illness. You begin to doubt yourself and your perception of what your body is doing. It is a weird way to live, because in one sense I have found myself and others who face a lot of medical challenges become very tuned into our bodies and what is right and wrong and when something is different. But at the same time, you don't trust that perception because unfortunately many doctors handle diseases they don't understand by convincing the patient it is all in their head or psychological. So you learn not to share a lot of what you are feeling or think is going on unless you are 10000000000% positive because the feeling of being doubted or thought crazy just isn't worth the benefit...life is all about the cost to benefit ratio afterall *smile*.
I am particularly careful of this when it comes to the nerve damage. From the moment I woke up in the operating room there were people, particularly my neurosurgeon, who wanted this all to be in my head. It was easier to label me as crazy than to admit his flaws and his mistakes (which he to this day has never done).It took me days of trying to convince him and finally my neurologist intervening for me to be believed and testing to be done to prove yes indeed there was real physical damage and this wasn't some head game or stress.
All that old baggage and those fears were a lot of why I worked so hard over the years to hide this part of my life, and why reopening it now is so hard. My first reaction when I realized I was noticing changes was to question myself and if I was just imagining the changes. It took me weeks before I mentioned it to the trainer and then my previous neurologist. There is a big part of me that fears going back to that place of having people look at me like I am crazy instead of hearing what might be going on because it is so far outside the norm. It has been 14 years since the nerve damage, there is no logically reason for a change now. Weight loss does not impact nerve funcation and I was thinner when it happened than I am now!
But luckily I have some great people in my life, including my previous neurologist and Gui, and both convinced me that this should get looked at again. That it would be stupid to pass up a chance for improvement over these fears. So with Debbie's help I am now scheduled to see a specialist at Mayo Clinic next week.
When we scheduled the appt, I thought the answer I was going to get, good or bad really mattered. That it would be life altering either way. But I realized last week in Israel, it really doesn't matter what the doctors say, it doesn't matter what the tests show. It also doesn't matter if there are changes or the differences are all in my head, because there ARE changes that no test can verify. Last week I walked on the beach, I climbed hills, I kept up, I was like everyone else. That was all I was hoping the tests would tell me I could be some day, but I don't need an EMG to tell me that any more. I found that answer on my own.
I have to admit, as much as I can sit here and say the answer doesn't matter, there is still part of me that is nervous. I am worried that if the tests come back the same as they were in 1996 if I am going to be able to keep the focus that I have right now that they don't matter. That whatever the doctor says doesn't define what I can make my body do or how much more improvement I can make. That the last almost 5 months have had nothing to do with results on a piece of paper, and neither will the next 5 months! Will I have the same drive and desire to keep going with my training and all the changes I am making if I am told nothing is any different? I would like to hope I would, but I remember how powerful the disappointment of bad test results can be.
It's funny as I just re-read all I wrote, I see myself doing it already. I am already bracing for the bad, for not being believed, for what I KNOW has changed in my body to be discounted. I KNOW I am feeling things I didn't before, there is no doubt what so ever. Yet I am already figuring out how to handle being told it isn't real. I really hoping opening this can of worms is worth it. It seemed like such a good idea when we scheduled this, now I wonder if some ghosts shouldn't have been left in the closet!!!!
Wednesday, April 14, 2010
Leaving just flat out sucks!!!!!!
My luggage is packed, the goodbyes have been said, the tears have been shed. There's not much more left to do than head for the airport. I so don't want to go. My heart is here and I am leaving it behind. I have a wonderful life at home, please don't get me wrong. But Israel is a magical place for me, especially after this trip. I feel like I have walked through a dream for a week. Around me dear friends, the comforting sounds of hebrew and a freedom I have never felt before. I don't want it to end.
It sounds so silly to say this, but I fear going home will be like waking up. I feel like for a week I have been living in someone else's mind and body. I have never felt so stress free before, so happy, so at ease in my own skin. I don't want to lose that. I love the confidence I felt here, The safety of knowing my body was capable of any challenge I put to it. It was the first time in decades I didn't feel like the world was looking at me and laughing. I didn't feel I was wearing a huge sign that said "Fat Disabled Girl....laugh at will". I worry if I can find those feelings back home where everyone is aware of those sides of me.
To Laura, Avi, Irwin and Iris....thank you. Thank you for an amazing trip, for your friendship and love. For making me feel like I was coming home not a visitor here. Leaving you behind is incredibly hard and not without many tears. I promise I will be back, soon and some day for good!
To those men and women, here in Israel and around the world, who fight to keep Israel safe and the amazing place it is. Thank you! So many people write this country off as a war torn waste because of what they see on the news. They have no clue how wrong they are, what they are missing out on and the absolute beauty of the people and the land here.
To my beloved Israel, thank you. For being the land of dreams, the land of people who believe in a world bigger than themselves, where being who you are is more important than what people think. L'hitraot until I return!
Thank you to my trainer......
I am asked all the time why I work with a trainer. Friends point out it's expensive (yup it is) and it can be stress provoking (yup it is) and I should be able to do it on my own after someone showed me the machines and how they work (anyone who says this has never had many physical challenges to face). This photo is why I work with a trainer....
When I started with Gui at the end of November I could barely walk through my house without stopping, I had to take breaks to walk from gate to gate at the airport, or find an electric cart for a ride. I hadn't used stairs willingly in 14 years and I had about 5 minutes stamina for anything physical.
Today I spent 3 1/2 hours easily climbing the hills and stairs of the old City of Jaffa (Yafo). I walked up to the its highest point, Abrasha Park, down to the port and back up. I went to all the galleries down cobblestone paths and steep stairs. And I did it all without needing to stop, to choose a different path or to give up something I wanted to see or do.
Working with the trainer is not always the easiest thing I do. He can be demanding, difficult, obstinant, sarcastic and at times even a little rude (yes for those of you thinking it, it is a lot like dealing with...well....ME *smile*). But I finally understand today why that approach is the right answer. Had he gone easy on me I would have been sitting in Tel Aviv dreaming of Jaffa, not out enjoying it. I never would have made the progress I did if I had been handled with kid gloves and babyed the last 4 months.
I also get now why I need to keep working with a trainer, something I had been questioning. For as great as today was, I know it could be so much better. I didn't let anything stop me today, but I did have moments of doubt and where I definitely wasn't as graceful as most would have been. I had to laugh, there were a couple times as I looked down an extremely steep flight of stairs that I thought of finding another route, but then I heard that little brazillian voice inside my head (and laughted out loud once I think). Just how many other tourists do you think were walking around taking pictures and mumbling to themselves "you can do this, stick your butt out, use your heels, stop locking your legs"????
I would like to think my approach to my training sessions will also be different. Lets be honest, I am a difficult student on my best day! I don't mean to be, but I know I try to take control, I try to do less than I should, I am not always focused and I let stupid things stand between me and success. And I hope that today will help me with that, but that is probably a great wish that I am not sure will change overnight. That is part of why I am writing this blog post, so the next time I want to kill Gui I will remember how much I need him *grin*!
The last 4 months has been the hardest work I have ever put in on anything. Far harder than any job or career I have had. Facing my food demons is still a daily challenge. Overcoming my fears and my self imposed limitations is an ongoing struggle. But today I got to taste the reasons I do it and celebrate how far I have come. It makes every dollar spent, every tear cried, every dessert missed and every sore muscle worth it and more.
I know I have done the work, no one in the end can do it for me. But I know today how incredibly blessed I was the day I agreed to give personal training a shot and to put my faith in another human being to help me reach my goals! Thank you Gui!!! Thank you will never be enough to repay you for the week I have had here in Israel and for helping me regain my life!!!!!!!!!!!!!!
When I started with Gui at the end of November I could barely walk through my house without stopping, I had to take breaks to walk from gate to gate at the airport, or find an electric cart for a ride. I hadn't used stairs willingly in 14 years and I had about 5 minutes stamina for anything physical.
Today I spent 3 1/2 hours easily climbing the hills and stairs of the old City of Jaffa (Yafo). I walked up to the its highest point, Abrasha Park, down to the port and back up. I went to all the galleries down cobblestone paths and steep stairs. And I did it all without needing to stop, to choose a different path or to give up something I wanted to see or do.
Working with the trainer is not always the easiest thing I do. He can be demanding, difficult, obstinant, sarcastic and at times even a little rude (yes for those of you thinking it, it is a lot like dealing with...well....ME *smile*). But I finally understand today why that approach is the right answer. Had he gone easy on me I would have been sitting in Tel Aviv dreaming of Jaffa, not out enjoying it. I never would have made the progress I did if I had been handled with kid gloves and babyed the last 4 months.
I also get now why I need to keep working with a trainer, something I had been questioning. For as great as today was, I know it could be so much better. I didn't let anything stop me today, but I did have moments of doubt and where I definitely wasn't as graceful as most would have been. I had to laugh, there were a couple times as I looked down an extremely steep flight of stairs that I thought of finding another route, but then I heard that little brazillian voice inside my head (and laughted out loud once I think). Just how many other tourists do you think were walking around taking pictures and mumbling to themselves "you can do this, stick your butt out, use your heels, stop locking your legs"????
I would like to think my approach to my training sessions will also be different. Lets be honest, I am a difficult student on my best day! I don't mean to be, but I know I try to take control, I try to do less than I should, I am not always focused and I let stupid things stand between me and success. And I hope that today will help me with that, but that is probably a great wish that I am not sure will change overnight. That is part of why I am writing this blog post, so the next time I want to kill Gui I will remember how much I need him *grin*!
The last 4 months has been the hardest work I have ever put in on anything. Far harder than any job or career I have had. Facing my food demons is still a daily challenge. Overcoming my fears and my self imposed limitations is an ongoing struggle. But today I got to taste the reasons I do it and celebrate how far I have come. It makes every dollar spent, every tear cried, every dessert missed and every sore muscle worth it and more.
I know I have done the work, no one in the end can do it for me. But I know today how incredibly blessed I was the day I agreed to give personal training a shot and to put my faith in another human being to help me reach my goals! Thank you Gui!!! Thank you will never be enough to repay you for the week I have had here in Israel and for helping me regain my life!!!!!!!!!!!!!!
Last morning in Israel...one last ghost to vanquish.....
Yesterday I couldn't wait to go home, and was even checking for earlier flights, today I don't want to leave. Yesterday morning set aside, this has been an amazing, awesome, incredible trip and I am so glad I came. It was the first vacation of my adult life I can remember totally setting aside work and things at home and just disengaging. I peripherally knew they was crap going on at work, but I managed to stay out of it and let it handle itself. I consider that as much an accomplishment for me as anything else I have done on this trip. It is a sign that I am moving closer to that life balance I am working so hard on. That work is becoming work and not what defines or drives me.
Yesterday morning is still lingering with me a little today. I'd like to pretend it isn't on my mind, because it shouldn't be, I should have let it go, but how freaked I got really bugs me, so I am still trying to make sense of it so it doesn't happen again. It makes me mad at myself that I considered reverting to destructuve eating disorder behaviors I haven't even considered in 15 years!!!! I need to figure out how to talk to Gui about that one when I get home, and know it wont be an easy conversation, and probably shouldn't be. But the bottom line is they were only thoughts, and not things I carried through on, and that is what matters. I reached out to my trainer and luckily he was available and said enough for me to regroup and right myself, even if I didn't like his answers at first...thanks TB!!!! *smile*
Today is all about enjoying my last few hours here. I am heading to the old city of Jaffa (Yafo) to track down what is claimed to be the best hummus in the State of Israel, I let you know!!!!
Going back to Jaffa will be an interesting book end on a journey I started here on my first trip in 2002. When I came here for the first time I was with 150 young Jewish leaders, after we left the airport our first stop was Jaffa. We said the shehecheyanu at a park over looking Tel Aviv. I remember being miserable and terrified because of all the steps, the hills and the walking, in that moment I totally regretted coming to Israel because I knew my body was going to limit me.
This morning I am going back, and I am seeing Jaffa the way it should be seen and am looking forward to it!!! "Piece of cake"
Yesterday morning is still lingering with me a little today. I'd like to pretend it isn't on my mind, because it shouldn't be, I should have let it go, but how freaked I got really bugs me, so I am still trying to make sense of it so it doesn't happen again. It makes me mad at myself that I considered reverting to destructuve eating disorder behaviors I haven't even considered in 15 years!!!! I need to figure out how to talk to Gui about that one when I get home, and know it wont be an easy conversation, and probably shouldn't be. But the bottom line is they were only thoughts, and not things I carried through on, and that is what matters. I reached out to my trainer and luckily he was available and said enough for me to regroup and right myself, even if I didn't like his answers at first...thanks TB!!!! *smile*
Today is all about enjoying my last few hours here. I am heading to the old city of Jaffa (Yafo) to track down what is claimed to be the best hummus in the State of Israel, I let you know!!!!
Going back to Jaffa will be an interesting book end on a journey I started here on my first trip in 2002. When I came here for the first time I was with 150 young Jewish leaders, after we left the airport our first stop was Jaffa. We said the shehecheyanu at a park over looking Tel Aviv. I remember being miserable and terrified because of all the steps, the hills and the walking, in that moment I totally regretted coming to Israel because I knew my body was going to limit me.
This morning I am going back, and I am seeing Jaffa the way it should be seen and am looking forward to it!!! "Piece of cake"
Tuesday, April 13, 2010
Totally not kosher...
Another gorgeous day in Tel Aviv. The sun was shining bright, the sea was sparkling blue and the breeze was blowing. I should have been ready to charge out and enjoy another day in Israel, but the day certainly didn't start out that way.
For whatever reason, still not totally sure what triggered it, I woke up this morning in a really lousy mood. I couldn't seem to get moving and once I did I was faced with my daily battle with breakfast. This is always the hardest meal for me, but today it seemed to up end me. Despite the immense Israeli buffet breakfast available I barely could find anything that looked appetizing and even after I did I was barely able to eat. Nothing tasted good and I just wasn't hungry. But of course the less I wanted to eat the more upset I got over it, and left breakfast fighting tears. My mood was totally not kosher!!!!
My first reaction was to curl up in bed and hide from the day, but decided I was not wasting the day so reached out for help from someone back home. Unfortunately at the time (fortunately looking back) the response I got was more a kick in the butt than the comfort I was hunting for, but either way it got me moving and I decided to take on the day, I am so glad I did (and grateful to the person who kicked my butt, we may not agree but at least it shook me out of my funk....irritated is a motivator for me at times).
As part of the response I was given, I was also asked a very interesting question, why am I so paranoid about gaining weight, especially since I know it will come back off in a day or two? It is a question I have been asked before and always came up with a lame answer for. Today I didn't even bother to answer when asked. Ok truth, I shot back with a bitchy response (sorry about that still) and moved on. I wasn't ready to be fixed, I just wanted help coping with where I was at, but I got more fixing than I realized at that moment.
Not answering the question didn't remove it from my mind, it never does. I chewed on it threw my totally non-kosher shrimp lunch at the namal (old port of Tel Aviv) and as I walked back along the Tayelet (the boardwalk that runs the length of Tel Aviv along the sea). As I walked the mile or so I was becoming more and more amazed with each step that I was taking that walk without struggling, stumbling or even the least effort, that I was able to walk on the beach with trouble (something I found incredibly difficult in Hawaii a year ago) and just how carefree the walk was. The ability to use my body now is something I far from take for granted and which leaves me shocked and stunned every day. it is just such a different world for me.
As I was standing in awe of how things have changed, the answer washed across me like the waves on the sand. I don't trust that this is all real, it is too good, too fast and I fear losing it. I have tried for 30 years to lose weight, I have tried for 15 years to walk again, and have had it fail on me at every turn. In the last 4 months I have done what I had long written off as undoable and while I have moved past not believing it can happen, I still fear it not lasting. And it is a level of fear that is visceral. It is driving my thoughts and my actions and I didn't even know it was there. I fear returning to where I was a year ago so much that I am missing out part of enjoying having it now.
This is another one of those posts, where I feel like I should have some profound answer I found, about dealing with that fear, about how I am going to get past it. But I don't know that answer yet. Just realizing that was what was going on is still settling in with me. Fear is a weird emotion for me, it is one people dont expect from me (I get told all the time how brave I am, boy do I have the world fooled on that) and one that I dont appreciate in myself. I see fear as weakness, as something I should be beyond. But I realized today that this is a really deep seated fear and something I need to figure out or I am going to keep coming back to the place I was at this morning. This is not something that ignoring it will make it go away.
Gui has said to me repeatedly that the biggest battle I have left to fight is in my head, but I never saw that as dealing with fear, now I wonder if that is actually the issue he was pointing at all along. If all my obsessing is just desperately trying to hold on to those things I fear losing more than anything.
For whatever reason, still not totally sure what triggered it, I woke up this morning in a really lousy mood. I couldn't seem to get moving and once I did I was faced with my daily battle with breakfast. This is always the hardest meal for me, but today it seemed to up end me. Despite the immense Israeli buffet breakfast available I barely could find anything that looked appetizing and even after I did I was barely able to eat. Nothing tasted good and I just wasn't hungry. But of course the less I wanted to eat the more upset I got over it, and left breakfast fighting tears. My mood was totally not kosher!!!!
My first reaction was to curl up in bed and hide from the day, but decided I was not wasting the day so reached out for help from someone back home. Unfortunately at the time (fortunately looking back) the response I got was more a kick in the butt than the comfort I was hunting for, but either way it got me moving and I decided to take on the day, I am so glad I did (and grateful to the person who kicked my butt, we may not agree but at least it shook me out of my funk....irritated is a motivator for me at times).
As part of the response I was given, I was also asked a very interesting question, why am I so paranoid about gaining weight, especially since I know it will come back off in a day or two? It is a question I have been asked before and always came up with a lame answer for. Today I didn't even bother to answer when asked. Ok truth, I shot back with a bitchy response (sorry about that still) and moved on. I wasn't ready to be fixed, I just wanted help coping with where I was at, but I got more fixing than I realized at that moment.
Not answering the question didn't remove it from my mind, it never does. I chewed on it threw my totally non-kosher shrimp lunch at the namal (old port of Tel Aviv) and as I walked back along the Tayelet (the boardwalk that runs the length of Tel Aviv along the sea). As I walked the mile or so I was becoming more and more amazed with each step that I was taking that walk without struggling, stumbling or even the least effort, that I was able to walk on the beach with trouble (something I found incredibly difficult in Hawaii a year ago) and just how carefree the walk was. The ability to use my body now is something I far from take for granted and which leaves me shocked and stunned every day. it is just such a different world for me.
As I was standing in awe of how things have changed, the answer washed across me like the waves on the sand. I don't trust that this is all real, it is too good, too fast and I fear losing it. I have tried for 30 years to lose weight, I have tried for 15 years to walk again, and have had it fail on me at every turn. In the last 4 months I have done what I had long written off as undoable and while I have moved past not believing it can happen, I still fear it not lasting. And it is a level of fear that is visceral. It is driving my thoughts and my actions and I didn't even know it was there. I fear returning to where I was a year ago so much that I am missing out part of enjoying having it now.
This is another one of those posts, where I feel like I should have some profound answer I found, about dealing with that fear, about how I am going to get past it. But I don't know that answer yet. Just realizing that was what was going on is still settling in with me. Fear is a weird emotion for me, it is one people dont expect from me (I get told all the time how brave I am, boy do I have the world fooled on that) and one that I dont appreciate in myself. I see fear as weakness, as something I should be beyond. But I realized today that this is a really deep seated fear and something I need to figure out or I am going to keep coming back to the place I was at this morning. This is not something that ignoring it will make it go away.
Gui has said to me repeatedly that the biggest battle I have left to fight is in my head, but I never saw that as dealing with fear, now I wonder if that is actually the issue he was pointing at all along. If all my obsessing is just desperately trying to hold on to those things I fear losing more than anything.
Monday, April 12, 2010
My next trip here...
Sitting watching one of my last sunrises here *sniff sniff*. I am so going to miss this view! I am so going to miss the hebrew, the people, the energy. But I have to admit as much as I love it here, I am kinda ready to go home. There are great things and people here I wish I could hang on to, but I am reaching that point where I want to not be in a hotel. I want a kitchen, I want my car, I want to feel like I have more control of my life. I am tired of restaurant food, I am tired of taxis.
With that said, I can't wait to come back here. I love it here, my heart is here. But I think one of the lessons this trip has taught me is that for vacations I need to start thinking differently in how I plan and where I stay. My life and needs are very different than they were on my last vacation over a week long and it has changed how I want to stay.
In the past the thought of cooking on vacation would never have crossed my mind, truth, it would have made me laugh. But now, I want that ability. I want better control of my food. I don't want to eat out and be stuck with what is on the menu or in a restaurant. Yesterday being a holiday and the restaurants outside the hotel being closed brought this into sharp focus for me.
My plan for my next trip here or anywhere over a week long is to look at the option of vacation apartment rental, or at least hotels that offer a kitchen option. It will give me better options and more flexibility. Not to mention many of them are cheaper in the long run.
Beyond feeling out of sorts with food again, I had another wonderful day yesterday. I spent it doing very little *grin*. Sitting by the pool/beach soaking up the sun, reading a book, just enjoying being here!!!! Got a little "toasty" doing it, but that is my norm for here, or anywhere with sun. I tend to be white or red.
With that said, I can't wait to come back here. I love it here, my heart is here. But I think one of the lessons this trip has taught me is that for vacations I need to start thinking differently in how I plan and where I stay. My life and needs are very different than they were on my last vacation over a week long and it has changed how I want to stay.
In the past the thought of cooking on vacation would never have crossed my mind, truth, it would have made me laugh. But now, I want that ability. I want better control of my food. I don't want to eat out and be stuck with what is on the menu or in a restaurant. Yesterday being a holiday and the restaurants outside the hotel being closed brought this into sharp focus for me.
My plan for my next trip here or anywhere over a week long is to look at the option of vacation apartment rental, or at least hotels that offer a kitchen option. It will give me better options and more flexibility. Not to mention many of them are cheaper in the long run.
Beyond feeling out of sorts with food again, I had another wonderful day yesterday. I spent it doing very little *grin*. Sitting by the pool/beach soaking up the sun, reading a book, just enjoying being here!!!! Got a little "toasty" doing it, but that is my norm for here, or anywhere with sun. I tend to be white or red.
Sunday, April 11, 2010
Yom Huledet Same'ach Li! Happy Birthday to me!
"We call them strong
Those who can face this world alone
Who seem to get by on their own
those who will never take the fall
We call them weak
Those who are unable to resist
The slightest chance love might exist
and for that forsake it all
They're so hell-bent on giving
walking a wire
Convinced it's not living
if you stand outside the fire
Standing outside the fire
Standing outside the fire
Life is not tried
It is merely survived
If you're standing outside the fire "
What a difference a year makes! I know I keep coming back to that phrase, but I feel like every day the contrast gets greater and greater, and I stand sometimes truly in awe of not only how much life can change in 12 short months, but how much a person can change in 12 months. Of how much I have changed
One year ago I weighed 330 plus pounds, I was barely able to walk more than a few steps without resting, I shyed away from engaging in anything that was physical or where I might be challenged with my walking or balance. I was not living, I was existing.
Today I am 70 lbs lighter, I can take on the stairs and the hills of Israel without a second thought. I am living! I control my body, not it controlling me.
But the physical side of my changes is minor compared what was going on inside.
I have spent the last 39 years of my life convincing myself that being able to make it solely on my own, not letting others close enough to hurt me, not depending on others enough to get hurt was the smartest way to live. That by depending only on yourself you didn't risk the pain and hurt that comes with loving others and more importantly allowing them to love you. That the cost does not equal the benefit when it comes to being vulnerable and letting others in. But somewhere in there I lost track of that being my choice and came to believe that no one wanted in. That I was really alone in the world. I had carved out an existance of being along, but again it wasn't living. I gave a ton to others, but never allowed others to give to me. And now see that was a high price to pay for safety.
In the last 12 months as much as I have changed my body, my walking and my health, I have gone even further to change my heart and my head. I have allowed others in. I have allowed others to see my weaknesses as well as my strength, I have learned that I am ok to love regardless of my imperfections and my failings. I have learned that people who love you stick around decades waiting for you to be ready for them. I have learned that scars of the past are never as bad as we remember them to be. I have learned that you don't have to be perfect to be deserving of the love of others, and that you don't need to live in fear that every imperfection will drive them away. That those who matter love us for who we are, good and bad, and those who leave over the imperfections weren't worth having around in the first place. I have learned that letting others in makes us stronger not weaker!
There are a million reasons I could list why this was the best birthday I have had in 40 years, but I realize now there is only one reason that matters...its because this year I know the amount of love and caring I have around me and for the first time am able to see that and feel it!!!! I am letting people into my life who are helping me better myself and cedeing control and trust to them in ways I never have before and it feels amazing.
I have to say, it is rather ironic to me that my birthday ends in the start of Yom HaShoa (the day of Mourning for those lost in the Holocaust) tonight. It somehow makes it all the more poignant. Sitting here thinking of all the people who never got to enjoy their lives, who never made it to 40, who had their lives stolen from them, just makes me all the more grateful for the life I have!
Thank you all for the birthday wishes, for your love and support, for loving me on my good days and my bad and for making this the best birthday of my life!!!!!
Lots of Love from Tel Aviv!!!!
Those who can face this world alone
Who seem to get by on their own
those who will never take the fall
We call them weak
Those who are unable to resist
The slightest chance love might exist
and for that forsake it all
They're so hell-bent on giving
walking a wire
Convinced it's not living
if you stand outside the fire
Standing outside the fire
Standing outside the fire
Life is not tried
It is merely survived
If you're standing outside the fire "
What a difference a year makes! I know I keep coming back to that phrase, but I feel like every day the contrast gets greater and greater, and I stand sometimes truly in awe of not only how much life can change in 12 short months, but how much a person can change in 12 months. Of how much I have changed
One year ago I weighed 330 plus pounds, I was barely able to walk more than a few steps without resting, I shyed away from engaging in anything that was physical or where I might be challenged with my walking or balance. I was not living, I was existing.
Today I am 70 lbs lighter, I can take on the stairs and the hills of Israel without a second thought. I am living! I control my body, not it controlling me.
But the physical side of my changes is minor compared what was going on inside.
I have spent the last 39 years of my life convincing myself that being able to make it solely on my own, not letting others close enough to hurt me, not depending on others enough to get hurt was the smartest way to live. That by depending only on yourself you didn't risk the pain and hurt that comes with loving others and more importantly allowing them to love you. That the cost does not equal the benefit when it comes to being vulnerable and letting others in. But somewhere in there I lost track of that being my choice and came to believe that no one wanted in. That I was really alone in the world. I had carved out an existance of being along, but again it wasn't living. I gave a ton to others, but never allowed others to give to me. And now see that was a high price to pay for safety.
In the last 12 months as much as I have changed my body, my walking and my health, I have gone even further to change my heart and my head. I have allowed others in. I have allowed others to see my weaknesses as well as my strength, I have learned that I am ok to love regardless of my imperfections and my failings. I have learned that people who love you stick around decades waiting for you to be ready for them. I have learned that scars of the past are never as bad as we remember them to be. I have learned that you don't have to be perfect to be deserving of the love of others, and that you don't need to live in fear that every imperfection will drive them away. That those who matter love us for who we are, good and bad, and those who leave over the imperfections weren't worth having around in the first place. I have learned that letting others in makes us stronger not weaker!
There are a million reasons I could list why this was the best birthday I have had in 40 years, but I realize now there is only one reason that matters...its because this year I know the amount of love and caring I have around me and for the first time am able to see that and feel it!!!! I am letting people into my life who are helping me better myself and cedeing control and trust to them in ways I never have before and it feels amazing.
I have to say, it is rather ironic to me that my birthday ends in the start of Yom HaShoa (the day of Mourning for those lost in the Holocaust) tonight. It somehow makes it all the more poignant. Sitting here thinking of all the people who never got to enjoy their lives, who never made it to 40, who had their lives stolen from them, just makes me all the more grateful for the life I have!
Thank you all for the birthday wishes, for your love and support, for loving me on my good days and my bad and for making this the best birthday of my life!!!!!
Lots of Love from Tel Aviv!!!!
Saturday, April 10, 2010
Another night of struggling
I have been here multiple times, and never before have I had a hard time adjusting schedule wise. For some unknown reason this trip is really kicking my butt on that front. Not sure if it is because of other changes I have made in my biological clock lately (my older late night appraoch may have lined up better) or what, but I realized when I was up wanting to eat at 3am again that this was the issue and part of what lead to the chocolate cheat and why I am not eating when I should be.
My body is not switching over to the time zone I am in. So I am wanting to eat at dinner time at home (which is 3am here) and don't want to eat during the day (when I would be sleeping at home). I am also not getting enough sleep (2-3 hours a night) and am ready for bed when the sun is coming up (which is bedtime at home). I am purposelly not napping during the day to try to get on a better schedule, but I am still up all night it seems.
The good news from last night is that when I gave in to the hunger, it was something much healthier. Thanks to Laura's fore thought and insistance I brought some of the pumpkin "muffins" back from her house and that is what I reached for at 3am. Super healthy and much better on calories. Thanks Laura!
My body is not switching over to the time zone I am in. So I am wanting to eat at dinner time at home (which is 3am here) and don't want to eat during the day (when I would be sleeping at home). I am also not getting enough sleep (2-3 hours a night) and am ready for bed when the sun is coming up (which is bedtime at home). I am purposelly not napping during the day to try to get on a better schedule, but I am still up all night it seems.
The good news from last night is that when I gave in to the hunger, it was something much healthier. Thanks to Laura's fore thought and insistance I brought some of the pumpkin "muffins" back from her house and that is what I reached for at 3am. Super healthy and much better on calories. Thanks Laura!
Shabbat, a day of rest and rejuvination...
The world has a lot it could learn from Israel, even if it doesn't see that. Work hard, fight hard, love hard and play hard. This country is all about giving it all you have. But what amazes me is how no matter how hard the work or the play, how important things seem Sunday through Friday, when Shabbat rolls around the country just stops. For 24 hours life is suspended for a day of rest. The difference was no where as noticeable here in Tel Aviv as it was to me in Jerusalem on my last visit, but it was still obvious. The food changes, the people change, the traffic changes. Shabbat truly is separate from the rest of the week.
I took my cues from the rest of Israel today and did very little. I slept in, I spent the day by the pool reading, I didn't work out. I just was...! I really needed that after the issue with the chocolate last night. It felt good. I ended up a little more relaxed than I started the day and a lot more sunburned. I am such a pasty white girl from MN *smile*. But at least I have some color and it isn't to the extreme that some of my previous visits here have ended up with. My first trip here I ended up with blisters. And YES that was with SPF 50 sunblock (which I also used today). I don't tan I just bake!
Food was a struggle today. I ate good things, I don't regret any of my food choices. I had 3 meals, I had 2 snacks, but I know my calories were way down from what they should have been (which was another reason I opted not to work out). I just wasn't hungry and so my meals were small. I don't think it had to do with the chocolate cheat, I tried to put that out of mind, or any hang ups with food. I purely wasn't hungry. I remember feeling that on my last visit in October too. That very little food filled me very quickly and eating less than normal, even for me. Oh well, I made sure I supplemented with protein powder so I at least know I am getting what I should on that front, which is an improvement over the last visit. And I had my pumpkin "muffins" (thanks Laura) so more healthy food!
Tomorrow is the big 4-0 day. Friends are coming to visit from Ma'aleh Adumim, and think the plan is beach time. The weather has been gorgeous so far, I hope it continues to hold out.
I took my cues from the rest of Israel today and did very little. I slept in, I spent the day by the pool reading, I didn't work out. I just was...! I really needed that after the issue with the chocolate last night. It felt good. I ended up a little more relaxed than I started the day and a lot more sunburned. I am such a pasty white girl from MN *smile*. But at least I have some color and it isn't to the extreme that some of my previous visits here have ended up with. My first trip here I ended up with blisters. And YES that was with SPF 50 sunblock (which I also used today). I don't tan I just bake!
Food was a struggle today. I ate good things, I don't regret any of my food choices. I had 3 meals, I had 2 snacks, but I know my calories were way down from what they should have been (which was another reason I opted not to work out). I just wasn't hungry and so my meals were small. I don't think it had to do with the chocolate cheat, I tried to put that out of mind, or any hang ups with food. I purely wasn't hungry. I remember feeling that on my last visit in October too. That very little food filled me very quickly and eating less than normal, even for me. Oh well, I made sure I supplemented with protein powder so I at least know I am getting what I should on that front, which is an improvement over the last visit. And I had my pumpkin "muffins" (thanks Laura) so more healthy food!
Tomorrow is the big 4-0 day. Friends are coming to visit from Ma'aleh Adumim, and think the plan is beach time. The weather has been gorgeous so far, I hope it continues to hold out.
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