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1STATEOFDENIAL's Recent Blog Entries

Some doctors blame us to save their egos

Saturday, April 16, 2011

www.doctoroz.com/blog/lazy-stomach

Sometimes doctors really don't know what's going on. That's okay - you can't expect everyone to know everything. Yet when someone who doesn't know what's going on decides to claim that 8 million people are being starved by their own malfunctioning bodies because they are just lazy, that is detrimental to our entire society. To have a "doctor" blame people for something that happens for any number of causes or none at all shows that we really need a change to our health care system.

Some children are born with gastroparesis and have to be tube fed for years or their entire lives. Are they lazy? Did they not do enough exercise while they were in the womb? Or could it possibly be that things happen to the body that we haven't been able to explain yet, and by blaming people instead of studying the disorder, we are condemning MILLIONS of people to a life of continuous pain and suffering, just so a doctor (or a few) can attempt to save face and their egos.

For anyone who reads this who knows anything about gastroparesis and pseudo-obstruction, please comment on the blog and let Dr Oz's people know that having a member of his team spreading falsities will not be tolerated. Those of us who suffer from this disorder will be grateful.

  
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MOM2ACAT 4/17/2011 3:49PM

    emoticon Agreed!

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Diagnoses #8 & #9 w/ more coming - tough read

Friday, April 08, 2011

Anyone who hasn't read several weeks worth of my blogs will have no idea what's going on.

For my sparkfriends, this is not good news. Be warned.

I've felt horrible all day. Started thinking about going to the ER tonight, but considering too many doctors are severely prejudiced and one look at me they say there's nothing wrong, or one look at my records and they throw pills at me and refuse me any other treatment. So I called my endocrinologist's office to ask if they can give me any test results so I can tell the ER doctors... they didn't call back. 3 hours later I called and they put my doctor on the phone. He gave me 2 diagnosis (#8 & #9 since Feb 2010) though he still doesn't know WHY it is going so wrong... but there are most likely more diagnoses coming. He said my blood tests were pretty much all very off, and he will be giving me all the diagnoses and several medications on the 18th, but in the meantime, he's putting me on an incredible dose of vitamin D (in December, my vit D was normal, now it is severely low) and is going to get me set up to get an abdominal CT scan to look for tumors on my pancreas and/or other organs. He also told me to eat 6-7 small meals a day... just one problem - I already do beyond that. I pretty much eat little things every 1-2 hours during the day - as much as I possibly can. It isn't helping. So I'm ready to give up on food completely. Pretty much I need to be on a low fat, low fiber, low carb, and moderate protein diet. What can I eat then?!?! My body obviously can't handle food, so I would rather spend the next 10 days not eating than have my body freak out every couple hours. Heck, I spent most of August and September last year barely eating or not eating at all. Not eating will do less damage than what is happening right now. (Don't argue with me unless you're willing to read several hours of explanations about everything that has happened to me in my life that proves this.)

Hankenstein has pointed out several times about how people here tend to tell things they wouldn't normally, since there is an anonymity. So I'm going to go along with this - feel free to stop reading here if you wish. Warning: what follows is a very very difficult read for anyone and everyone.

As I'm sure you can figure out, I hold out little hope of my health turning around with these new diagnoses. The problem with this is that I can't die. (Again - don't even argue - you have no idea.) I should have died over a dozen times in my life... not a 'near miss', but most people, if they had gone through it, would have easily died. I've attempted, several others have attempted (without my consent), several forms were attempted, but I always came back. Once I was choked until I had stopped breathing for several minutes and my heart stopped for at least a minute (I lost the ability to count the seconds around 30) and without any attempts to revive me, and with me fighting to NOT breathe, I still couldn't die.

The irony here is I haven't wanted to live nor had real hope for my life since I was about 8 - that's over 20 years of wishing I could just die. But when I realized I couldn't die I also realized there was no point in trying. So now I wonder, as my body malfunctions and shuts down, will this finally kill me? Or will I be forced to continue the daily torture that has been happening from myself and so many others around me for most of my life?

BTW, if you think that is depressing and sad, it is only a tiny piece of what haunts my every waking moment. My therapist is completely out of ways to help me, as she's completely overwhelmed and seems to have problems even hearing what's happened to me at this point. She didn't believe me when I told her I was a tough case... she gets it now. She now understands why pretty much everyone in my life gives up on me.

Lastly: please don't say that I haven't died because I must have a reason to be here, something I need to do. I think that is the most ridiculous idea ever, because how often do you hear about how 'the good die young' or 'it is such a shame to lose him/her'? Then how often do you hear 's/he got what s/he deserved' or 'the world is better off without him/her'? People will not mourn me when I'm gone. I've known for years that I do not want a funeral or a wake because the handfull of people who might come would be patronizing me by pretending they will miss me, when they haven't cared for years. I'd rather be ignored and/or used (for research) in death the way I've always been in life. Of course, whatever is out there that chooses who lives and who dies first needs to be persuaded.

  
  Member Comments About This Blog Post:

IVORY1825 4/12/2011 8:19PM

    I think I understand why you are a Supernatural fan.

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ANDREWS_MOM 4/10/2011 4:27PM

    I can say & do believe you do have a purpose & are so worth it- but until you believe it, it probably won't mean much- so I'll just echo what the others have said.

Praying the doctors can get it together for you and give you an outcome that gives you hope & something to hang onto.

Know that you're in my thoughts and prayers & even tho' we don't "know" each other in real life- know that you do matter to me & i'm proud to call you my friend.

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MOM2ACAT 4/10/2011 4:09PM

    emoticon

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SUNNYBUNNY112 4/9/2011 8:08PM

    honest and frank..can't argue with what you are saying...you wrote what you feel...and I admire that...I do...so I won't touch on that part...I could say all day that I do believe you have a purpose, but you have the right to feel how you feel :)

about the eating...I am there with you...we share a common denominator...and I go as long as I can without eating...I have drank more...I am up to abut 20 ounces...funny cuz I can drink an entire bottle of wine...I and my doc still haven't been able to figure out that one...lol
listen to your body...nibble, but yes, there ain't much to eat...from march 2008 to july 2008..i ate only altoids...i ate 16 boxes a day...nothing would empty at that point...so I know how you feel...just gotta say hang on...just hang on :)

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CHICSINGER 4/8/2011 7:56PM

    You're absolutely right. I don't know your past. I have not read any of your blogs. But I will say this... I'm so sorry you're going through such a rough time for so long. There are so many people here at Spark who DO care. Who have been in similar situations where you get a little helpless. Maybe even hopeless like you. Because this is how you sound to me...
It's good you wrote this all down. I can't help but wonder that if you don't want words of encouragement, why did you write this blog? I think it's because you want SOMEONE to know what you're going through...
Thing is, you're still here. Alive. I will pray for you... Because I know for a fact that when you think positive, positive things start to happen. Plus the power of prayer is amazing. I will be hopeful for you. I hope things turn around for you. I hope you find better Doctors that can really help you. So what you're saying is that it's a miracle you're alive right? Again, I will pray for you sweetheart...

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My appointment was rescheduled

Tuesday, April 05, 2011

Got a phone call from my endocrinologist's office today. They cancelled my appointment on the 11th and moved it to the 18th. I was already worried, now I'm freaking out. I'm scared to eat. I'm scared to move. I'm just scared. Now I have to wait a 2nd week to get my results and/or any recommendations about what I can do to deal with everything my body is going through. I asked that if there is anything he can tell me before the appointment to please ask him to call me because I'm just freaking out.

So in the meantime, I'm realizing when I eat is when I feel like horrible. So I'm cutting back on eating. This may mean I will start losing weight again, but I guess I'll deal with that if it means I can have a little less pain through the day.

  
  Member Comments About This Blog Post:

1STATEOFDENIAL 4/7/2011 7:51PM

    I do have Ensure, as that is my best bet when my GP acts up. Though it has 6g fat and 40g carbs, so with all my issues, who knows what it could do if that's all I 'ate'.

Right now I'm just trying different things to see what happens. Then focusing on work all day (I'm getting overloaded right now, so it isn't tough to focus my entire halfway-working brain) and pretty much collapsing on the couch when I get home is somewhat helping to keep me from freaking out non-stop over this.

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ANDREWS_MOM 4/7/2011 3:44PM

    Would Ensure or Boost help you at all? The regular ones have 240-250 calories / then they have other ones w/ like 350 calories- they're complete balanced nutrition so maybe if you can handle a few of them a day at least you can maintain your weight and get some balanced nutrition.

Praying they can get you in sooner & at the very least can call and give you some info/advice.

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1STATEOFDENIAL 4/6/2011 5:59PM

    There is a small chance there could be a cancellation, but VERY small. He is going to be out of the office for half of next week and I can't just leave work so unless it is a late in the day appointment, I couldn't make it anyways. So I can't count on that happening.

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MOM2ACAT 4/6/2011 5:55PM

    I'm sorry you have to wait longer for your appointment! Any chance they might call you in sooner if they if have a cancellation?

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Fighting yesterday

Tuesday, April 05, 2011

While it was a good thing to have someone with me during my hellish test on Saturday, as I expected, Sunday brought a HUGE fight with my mother. It was over an hour of fighting, then an hour of me just saying some things I wanted to say, then an hour of her crying and defending herself then getting pissed at her life, then finally an hour and a half of finally getting to talk. All in all, it was good that she finally shut up for once and actually listened... BUT did this really need to happen NOW?!?! She went home today - so now I've gotta get back to my routine.

I found out I won't get any test results until I see my endocrinologist in a week (11th). Which means I have a week of fighting myself to not dwell over this or try to figure it out on my own - this is going to suck. In the meantime, I just feel terrible. From when I finish breakfast in the morning until when I go to sleep, I have a headache, my entire abdomen and back hurt, and I can't concentrate or think straight. My work is definitely suffering, but I can't just not work while they figure this out. That would mean giving up my job. So I fight my body all day at work and when I get home I just want to collapse - and I often do just lay on the couch and fall asleep or at least doze.

Time for me to head to bed and see what tomorrow brings.

  
  Member Comments About This Blog Post:

ANDREWS_MOM 4/5/2011 7:42AM

    Wishing you the very best the day could offer.
Hoping you get some answers soon - answers that can heal your pain.
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MEANCARLEEN 4/5/2011 12:30AM

    emoticon

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Glucose tolerance test... how it went

Sunday, April 03, 2011

I'll be honest, I'm scared. I had my glucose tolerance test today and it was just bad all around. I'll try to give a rough rundown of what happened. (FYI: glucose levels should be between 65-99 to be a normal range.)

I was taken in back to have my blood drawn (5 or 6 tubes) and was going to be given the glucose before going back out to the waiting room to sit for an hour. Unfortunately, that didn't happen. As she finished drawing my blood, I collapsed to the floor. My brain was just shutting down and my hands went into a seizure-type rigid state and I couldn't even move them - that lasted for probably 5 minutes. They wanted to cancel the test - NO WAY! I need this figured out! They tested my glucose and it was 75. They took me to a room with an exam table so I could lay down. After a few minutes they gave the the glucose drink and then I sat up in a chair to play sudoku (use my brain). I felt the symptoms coming at a little over 30 minutes, and ended up being put back on the exam table to lay back down. At an hour she drew my blood again (2 tubes) and my glucose was 236. Shortly after I went into seizure-like shakes - though I was awake and alert and telling everyone I don't need to be comforted because this is my body (over) reacting, and I'm not freaking out. I pretty much spent the rest of the time laying on the exam table. At an hour and a half I started feeling better, but at 2 hours my glucose was still 236 (3 more tubes of blood drawn). During those first 2 hours I was all over the board from seriously freezing cold to hot, a little hyperactive and talking a LOT to so out of it I could barely talk, shaking uncontrollably to unable to move. At the last blood draw (2 tubes) my glucose was 203. After that draw I all but fell asleep as I could barely move and couldn't really talk. They had to get me to my mother's van with a wheelchair because after 3 hours of this I was in so much pain and could hardly move.

So when I got home, I ate a few things I knew I could digest well. 3 hours after I got home I tested again (they sent me home with a glucose meter to try to get more information before I see my endocrincologist again on the 11th) and I was at 58. Grabbed some dinner at Wendy's then went to Kohls because my mother wanted to get some things. After about 30-40 minutes walking around in there I was really weak so I ended up spending the last hour in the store in a wheelchair. When we got home, I tested again (2 1/2 hours after eating) and got a 116.

This test went completely wrong from anything I was expecting/hoping for. I can't figure this out - and I hate that. I like to have a plan and/or be figuring things out. Now I just don't know what to do, because my body just can't seem to figure out how it is supposed to work, and it really has no clue what to do with food. I am really scared about what is going to happen from this. While they drew like 13 tubes of blood, if they can't find anything, I will be put through another test like this, only more complicated.

Another complication to the test is that while I drank 9 cups of water yesterday, I didn't get much chance to drink water until after the test, so during the final blood draw, my blood was incredibly thick. I didn't think you could go that dehydrated that fast.

Now tomorrow I have to try to figure out how to put my fear aside and go back to forcing my body to function just enough to make it through the hellish days at work. I honestly hate this.

One last thing, my mother said today that she never thought her kids would have more health problems than her, but she's now viewing her diabetes, back surgeries, and breast cancer as easier than what I'm going through. I tried to crack a joke: this isn't a contest... but I'm winning. I definitely don't want to be, but this is apparently just the way it is.

  
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1STATEOFDENIAL 4/7/2011 3:07PM

    Blood can be thick - mine went from flowing just fine at the beginning, to barely flowing out of my vein by the end so that it took 3+x as long to fill a tube.

I have no problems with my anxiety level - it is normal to be worried about your health when you're in the process of figuring out your 8th diagnosis in a year. I've been going to a therapist because of the horrible health problems I've been dealing with and by now she is incredibly worried for me as well!

Also, I have no other symptoms of diabetes, and not a single risk factor for diabetes. My mother is insulin resistant due to her being obese, not exercising, an alcoholic, having untreated mental issues... etc - I am the opposite of her. Plus, since this test, I've been testing my blood sugar several times a day, and for the most part it has been reacting to what I eat in the way it is supposed to be... just sometimes it is going way too high and others it is going WAY TOO LOW - and no, I'm not taking insulin. This shows this is most likely not diabetes, but something much more difficult to handle.

Lastly, if I start eating a low carb diet, I WILL HAVE TO STOP EATING! I am already on a low fat, low fiber diet - with a lower amount of protein otherwise it will shut down my kidneys. If I start eating low carb, I will not be able to eat even 750-1000 calories a day... which means I will probably lose what little weight I have above being underweight in a very short amount of time... especially since if I'm under 2000 calories a day, I lose 1/2 to 1 lb a day.

Yes, I'm a little upset. It seems you didn't take the time to read any of my other blogs to find out what is really going on, just making a judgement based on 1 blog and the fact that I'm on what is predominetly a weight loss website. That is not what I'm here for though.

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CHARMIAN2 4/7/2011 5:25AM

  Just an FYI-blood doesn't get "thick". If you are super dehydrated your hemoglobin level will be slightly higher than usual but that is a test result (not performed during your GTT) and is not reflected in your blood "thickness". I recommend you see someone about your anxiety level and try to relax and let people who know their job do the rest.Based on your blood test results you probably have diabetes. AFter drinking the loading dose of glucose your glucose went to where it should be-then it is to come down to normal range (about 100) within 3-4 hours. This happens when your body insulin is produced and metabolizes the glucose.Usually due to insulin resistance-means your cells do not allow the insulin to do its job-from years of too many carbs, fats etc-they are just worn out!! If it doesn't happen (as yours did not) it is usually a diagnosis of diabetes. Start eating the ADA diet until your appointment-it won't hurt you-its a perfect diet we should all be on. Look up type 2 diabetes and follow that. A lot of people can totally control type 2 with diet and exercise. Best of luck.

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ANDREWS_MOM 4/4/2011 3:33PM

    I am so sorry for all that you are going through.
I agree w/ MOM2ACAT & hope that the doctors can now figure out what's going on and how to proceed to get you on the path to health & wellness.
You're in my thoughts & prayers.
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MOM2ACAT 4/3/2011 4:03PM

    emoticon I hope the answers can be found from that test so that you do not have to go through that again.

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