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I didn't realize it was that many.

Monday, September 26, 2011

Today I started writing a list of symptoms to show the docs at mayo. Anything that is clearly not ordinary, has lasted for more than several months, and has been detrimental to my life is going to be written down. I also hope to give a general idea of when each symptom started (if possible - at least what decade of my life they started).

So far, my list is 38 symptoms. At least half I've had for more than 10 years and several for more than 20 years (I'm 30 btw). Yeah, there's no doubt why most doctors have no intention of listening to me give my list of symptoms. They only want to know what's new, but how can you diagnose what's new when the older conditions were never taken care of? What's carry-over or something worsening and what's really new? I don't think it's possible to separate them all at this point.

This again brings me back to wondering if Mayo will help. No doctor wants to deal with 38 (and probably more) symptoms in one person! No human brain is equipped to handle that many issues all at once. No computer program can take that many symptoms and separate what goes with which condition. This is why I've given up getting help for most of these - because doctors stop their patient's story (including symptom list) after an average of only 18 seconds. There's no way to even get through a portion of my list in 18 seconds. But now that I'm making the list, I'm going to have to prioritize it with which symptoms make my life the worst and which I've learned to live with. Numb hands and feet I can live with. Massive heart palpitations I can live with. Random shakes I can live with. Constant headaches since I was a kid I'm sick of. Debilitating fatigue, random blackouts, and fainting spells are dangerous. I'll save you the time and exhaustion from reading all of my symptoms.

38 - I knew the number was high but I didn't realize it was THAT high. And it will go higher once I start ranking and dating them.

  Member Comments About This Blog Post:

ESMERM 10/2/2011 7:08PM

    I understand your desperation. Since I have memory issues, I usually start writing down all my symptoms before going to the doctor and then hand the doctor the whole list.

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ANDREWS_MOM 9/28/2011 9:57AM

    You are going to the best there is and they are the best for a reason. I have no doubt that they will take the time and do everything possible to get some answers for you. My experience at Temple was unlike any other doctor's appt I've ever been to- nothing i said was doubted or negated. I wasn't looked at or treated as if i were crazy- which is how i felt after leaving my reg gi's office many times. They are there to provide services other dr's can't and i am wishing for the very best possible outcome for you and some relief from your pain.

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KKSTEIGERWALD 9/27/2011 7:25PM

    I know that I've already said this before, but try to stay positive that they can help you. My Mom went there a few years ago for a problem that she's had for years, and she finally got some help from the Mayo clinic. Her medical issues were not as substantial as yours, but they did take the time to listen to all she had to say and read through all of her medical records. I know it's hard, but try to saty positive.

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REBHACK 9/27/2011 3:58PM

    Wow! That sounds rough. Good luck!

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ELLSKI85 9/26/2011 10:50PM

    I'm sorry to hear about your condition (or I guess lack of diagnosed one). Have you ever heard of Wolf Parkinson White Syndrome? I had it, but thanks to 2 unsuccessful surgeries and 1 final successful one I don't any more. Some of these symptoms sound like W.P.W. :Numb hands & feet, palpitations, dizziness. I got my first symptom (sudden palpitation) when I was about 13 (I am now 26). They put me on Beta Blockers to control the palpitations. I hope you find the answers you're looking for, as well as a good doctor.

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GETFIT1126 9/26/2011 10:46PM

    You're going to the right place. I'm sure you'll get the help you need there. I hope everything goes well for you.

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This condition takes so much away from me.

Saturday, September 24, 2011

Tonight I was so hoping to go out. I have some acquaintances who are a cover band. The lead singer's 40th birthday was earlier this week and they're celebrating with a show tonight. I really wanted to go, but throughout the day I've been feeling worse and worse. I've nearly hit the floor from passing out several times just by standing up. Everything hurts. I'm having a hard time breathing. It's just a really bad day. So there's no way I can go. I HATE THIS!

Beyond feeling better just to feel better, I want to feel better so I can go out sometimes. It'd be nice to do something besides work, errands, and sitting at home. This condition is making the lonliness I always feel become even more true than ever. And the Mayo trip... I'm terrified that they can't or won't help and they're my last hope, but right now I'm desperate to get some kind of help/treatment for this! Obviously I can't not go, but that doesn't mean I believe it will be a happy outcome even if they want to help.

Back to the couch I go to lay in agony until I can sleep.

  Member Comments About This Blog Post:

KKSTEIGERWALD 9/27/2011 7:19PM

    My goodness, you've been having such a hard time. Are you able to at least rest well? I hope so. And I hope your time until the appointment at Mayo passes quickly. I know that this is cliche, but try to stay positive that they can help.

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I want to share something.

Tuesday, September 20, 2011

(If you stop reading after the first sentence then you are probably illustrating the point of my blog.)

I've never been overweight; actually I spent plenty of time in high school being underweight. Yet I was beaten up for being too fat, then for being too thin, all in the same week. Just because I've never been overweight doesn't mean I don't understand the plight of someone who is.

I have a work friend who is an incredible person who I really enjoy talking to and care about. She's a single mother taking care of 2 kids while working 2 jobs. She can't spend a lot of time working out or planning meals. She always has a smile on her face and I'm glad to know her. She's also obese and doesn't attempt to deny it. I couldn't care less how she looks beyond the fact that I'd feel horrible if her weight took a serious toll on her health. Still, she knows if she wants some help figuring out how to lose weight, I'll help her but never push her into it. Every week I get the newspaper, clip out all of the coupons, and after I take what I want she gets first dibs before other coworkers. I can't do much to help her out, but that's one small thing I can do - help her save a little money.

There's a new girl at work that I've just had a bad feeling about. She's young, naive, and really enjoys interrupting everyone else's work to rant about how horrible her workload is. On Friday, she and I were the last to leave our section and she took the time to go off on a rant about the woman I consider a work friend. She made comments about how she's so fat, says she's 'trying' weight watchers, but then eats a whole bag of chips and 4 brownies before eating a lean cuisine. This rant just kept going on and on, even though I kept trying to tangent her off into a different direction, but she kept going back to bashing this woman. It was absolutely clear this was the girl's issue with her prejudices and only seeing what she wants to see, not the truth. I felt so uncomfortable, sad, and disgusted. Plus her voice was so loud that anyone in our cubicle land could've heard her and mistook it to think I was partaking in the conversation. It has been bothering me all weekend, worried that someone would tell my friend that I was a part of this conversation and so upset that I had to hear it in the first place.

Today I went into work and talked to her briefly about it. My friend never heard anything and she says she doesn't care. She doesn't know who the girl is and has never spoken to her. She laughed it off and made jokes about it. I'm not sure if she's just that incredibly strong or if that's her coping mechanism, but I gave her the chance to talk to me about it if she wants/needs to. I also spoke to my boss (who is overweight) and told her while my friend said she wasn't upset, I really was. It was a very uncomfortable position for me in addition to it being tasteless and unprofessional.

Of course I didn't feel much better when my boss made the comment of 'well you're so skinny...' what does my size have to do with this? Is it impossible to believe that I have a big heart and know what it's like to be humiliated and criticized because of how I look just because I'm thin? For krikies sake, I have a severe medical condition that most people and too many doctors don't believe exists and have people constantly judging me and making disturbing comments about me based on their own prejudice. So yes, talking to my boss kinda made me just as upset as hearing the girl's comments.

I wanted to share this because too often I get the feeling that SOME people choose to take the stand of 'overweight people versus skinny people' and believe that those of us who are a healthy weight can't possibly understand what it's like to be overweight. I've seen it said that when you're overweight everyone is staring and making rude comments. I don't believe it because over half of Americans are overweight, so if someone has to be overweight to 'get it', then more than half the people around you should 'get it'. Then there is a ridiculous number of people (10s of millions) who have invisible illnesses so that removes another group of people who probably won't be so judgemental. Then there are people like me who have a heart and the capability of understanding, even if we look like the 'enemy'. I've had too many overweight people make horrible comments about me being too skinny and needing to have a cheeseburger crammed down my throat to believe that overweight people aren't doing the same thing to everyone else that happens to them. A severe lack of self esteem isn't reserved for people who are overweight - there are MANY others who have the same exact problems but have different manifestations of those issues. So why is there this 'us against them' mentality? Why do some people believe EVERYONE is staring and making comments when it is probably only a couple of moronic jerks who need to hurt others to feel better about themselves? What's the point?

Consider this: sometimes when I look at a person who is overweight I'm a little envious of them; I don't have a properly functioning digestive system so I have to fight every day to get enough calories in to not lose any more weight while that person can eat whatever they want - good or bad - without getting incredibly sick. On days where I'm using every ounce of energy just to get through a workday to come home and collapse on the couch in utter agony and exhaustion, I know I would willingly put on 50 pounds if it meant I could eat vegetables and fruit and cheese and nuts again without doubling over in pain!

If you're overweight and feel everyone is staring, remember this blog and realize that some people are looking because they remember being in the same boat, or they wish they could do something to help you but are too afraid of being deemed inconsiderate, or maybe they're envious like me. Heck, maybe they love your necklace or belt but are too shy to ask where you got it. But the odds are the majority are not thinking all the bad things you might think they're thinking.

  Member Comments About This Blog Post:

LIVINHEALTHY9 9/21/2011 7:44PM

    It's sad that some people feel the need to put down others because somehow it makes them feel better about themselves. Usually it's about their own insecurities.
Sorry you had to be in the middle of it.

Hope the rest of your week goes better.


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KERSTIN814 9/20/2011 7:40PM

    So true. You should checkout WildfireKristin's blog on just this topic.

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KKSTEIGERWALD 9/20/2011 7:21PM

    It's sad, but some people feel a need to talk down about others for whatever reason. It would be great if we didn't, and if we didn't assume to know all about someone just by looking at him or her.

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EVWINGS 9/20/2011 6:49PM

    Boy can I relate to your work friend!! You are the kind of friend I would like to have!! I have always been big for my age until graduation. But in 1st grad I was called elephant rather than Evelyn. Then I went from 215 to 160 amd was still called "heavy Evie". No, it isn't fair and ues it can hurt self esteem, but being healthy is most important. Thank you for your most thoughtful post.

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MOM2ACAT 9/20/2011 5:16PM

    I was underweight in high school, and all through school, even though I could eat like a horse. I was picked on for being too thin among other things; I wasn't so thin that I was unhealthy, just on the small side for my age.

There was a country music song, I don't remember who sang it or the title, but the chorus went; "work your fingers to the bone, what do get? bony fingers....." Well, the kids in grade school called me Bony Fingers and that really hurt at the time.

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MANDI99P 9/20/2011 9:17AM

    The truth is, some people just make rude comments and put people down to make themselves feel better. I have heard overweight people making fun of other overweight people, and I have to wonder "do you have room to talk?" I honestly believe that if everyone just worried more about themselves then talking crap about other people, this world would be a much better place. I do love how big of a heart you have and that you care so much about everyone else. You truly are an amazing person!

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I need to get writing

Saturday, September 17, 2011

Awhile ago I was talking about emailing the Ellen show. I keep telling myself to do it, but I keep putting it off because I really don't know what to say. I keep asking myself 'what about my Tubie Duckie project and my own struggles will draw attention?' and I end up in this long tangent. I can't seem to nail down in just a few words what is so important about the project and why I'm someone who should be helped.

It also doesn't help that I don't believe in myself, so I feel horrible when I try to say good things about myself. I can't ask for help if I can't give a good reason for deserving the help without feeling like I'm lying!

Maybe tomorrow I can sit down and try writing something, anything, just to have a starting point.

  Member Comments About This Blog Post:

KKSTEIGERWALD 9/19/2011 2:07PM

    I'm sorry you're having trouble figuring out what to write, but I'm rather sad to see you write that you don't believe in yourself. It's amazing that you feel that way, because in your writing online you seem just the opposite. Whether your're posting a blog or commenting on one, you have such insight and clarity of thought. You come across as someone who has a great deal of knowledge that you enjoy sharing wih others. You're such a passionate promoter of self-advocacy; don't you think that's a great place to start? I think the Ellen show (or any talk show) would want to hear about your struggle with your diagnoses, your drive to be your own medical advocate, and why other people should be doing the same and what you've learned in the process. Don't be down on yourself - you have a LOT to offer! I really hope you decide to move forwrad with the letter.

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Same story, different day

Friday, September 16, 2011

I haven't been blogging lately because there isn't much to tell. I've spent half of each of the last 4 weeks in DTP flares. I feel like I'm falling apart as this keeps getting worse. I'm still scared about going to Mayo and leaving without getting help. Work has me stressed out, my house has me stressed out, my car has me stressed out, the upcoming winter has me freaking out, my health has me incredibly scared, my loneliness keeps getting worse, and sometimes all I want is to curl up in bed and stay there for a week.

During these flares my dinners have been consisting of smoothies that have a base of 1 banana, 1/2 cup no sugar added applesauce, and 1/2 cup low or non fat yogurt, with a 1/2 cup of either low fat ice cream, low fat frozen yogurt, or carnation instant breakfast powder for flavor. I hate that sometimes that's the best I can get into my stomach for dinner. But after that I lay on the couch for an hour or two (if I can), then try to cram in something higher in fat like cheese, ice cream sandwiches, or something like that just before I go to bed. I've found I can't sleep without a full stomach.

I'm starting a 12 hour fast to head to my Endo's office for a quick blood draw - most likely to check my fasting glucose. So I just crammed a heck of a lot of food that I shouldn't be having right now into my stomach so I can attempt to go to sleep in a little bit and hopefully sleep through part of the night.

Unfortunately my issues will probably stay this way until (and if) the doctors at Mayo get all my diagnoses and get me going on some type of treatment(s). Course that won't fix the lonliness, but maybe then I can actually eat enough to keep me awake and functioning all day.

  Member Comments About This Blog Post:

KKSTEIGERWALD 9/19/2011 2:18PM

    You have been having such a rough time lately. I know it doesn't do much to say that I hope it gets better, but I really do. I know it's hard, but try not to let the lonliness get to you. Your conditions probably make it difficult to go out and spend time with friends and interact with people. I have the same problem, but not because of the GP. Mine is because of the migraines. Funny, but most people can't comprehend when you have to keep cancelling plans because you have a migraine and can't get out of bed (again). After awhile I usually lose my friends because they don't believe me and think I'm just blowing them off. It's not easy, and it does get lonely. I hope that you have someone who understands and that you can talk to, even if it's not too often. But you also have all of us here. I know it's not quite the same, but I'm here and I know that Amy is as well, and we're ALWAYS here for you. I might miss a few days checking in (like I did this past weekend), but I won't be gone long and you can ALWAYS leave me a message if you want to chat. Be well and take it easy.

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