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Took pictures for evidence

Sunday, September 11, 2011

One thing I didn't mention about my last Endo appointment was that he wanted me to take a picture of my distended abdomen. Not sure why, since a picture won't really do it justice. I decided to take it a step further and I've taken multiple pictures all day today to show the progression. Most Saturdays I spend the day laying on the couch and relaxing. Instead, I spent today moving around, doing some cleaning and laundry, and didn't lay down at all. I did this on purpose - my body seems to not be able to digest when I'm standing and moving around or at least sitting up. I also ate foods that my body doesn't really like right now. Throughout today I've been taking 4 pictures in a set about a half hour after each meal. 2 are side views and 2 are front views and each set has one where I'm tensing my abdominal muscles and holding my breath and one where my abdominals are relaxed. The scary thing is you can seriously tell the difference from the first pictures to the last! And today wasn't even one of my worst days!

I'm incredibly exhausted though, after doing an hour of cleaning my bathroom and not laying down all day. I took the meds that knock me out so I should sleep through the night (except on Sundays I have to get up between 6-8 to get my paper before my neighbors steal it, so I'll have to wake up for 5 minutes to do that). Hopefully when I wake up I will have digested everything that's been sitting in my stomach all day.

The homeowners association meeting was completely stupid. Very few people even came and they spent time lying to us about how great they are. Then this afternoon I got pictures of my neighbor once again taking her dog out without a leash, so I emailed that to the association and the city. She should be fined by both. Then at 1130pm that same neighbor's 30 something son (they live together, just the 2 of them... yes those disgusting thoughts you might be having are probably true) was dropped off by a couple buddies, and he and at least the passenger in the car were absolutely beyond trashed. They were yelling and screaming, trying to break into his car, pounding on the garage door, hugging and rubbing each other, and then when the car tried to drive away he jumped on the hood of the car before getting off and spinning in circles and dancing. I called 911 to give the license plate and information because with as trashed as those two were there's a chance the driver was impaired as well. At first I thought they were just breaking into the car, but as I was talking to the dispatcher I relayed all that was happening and when he tried to get into the house (but couldn't figure out how to use the door handle) and had the door opened from inside I realized it was him. Honestly I have the worst neighbors.

Well, I can't handle this stomachache and headache any more. I have to lay down and get this food to start digesting before my belly bursts. Let's hope I can spend most of the day tomorrow laying down!

  Member Comments About This Blog Post:

KKSTEIGERWALD 9/13/2011 10:17PM

    Sorry to hear about the neighbors - they don't sound pleasant. I'm still hoping all goes well with your appt at the Mayo clinic, and I hope you got some rest!

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ANDREWS_MOM 9/13/2011 4:26PM

    Hope you're feeling better!
I took pictures of my distended tummy too to take w/me when i went to temple. Plus I just wanted them for myself - it's sad that i feel i need to have "proof" that this really does happen / exist.
I think you're appt at Mayo will go unlike any other appt you've ever had. They used to dealing w/ complex cases other dr's couldn't figure out.
Wishing nothing but the very best for you.
I know how painful it is to be going through this.

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SWEETBEETL 9/11/2011 1:50AM

    Feel better and most neighbors do stink:)

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The cravings for normal food got to me.

Friday, September 09, 2011

One huge annoyance: seeing food that makes me want food and knowing I can't have it. There are plenty of times when I say I just want to eat a normal meal no matter how much it hurts me, but I know it's a horrible idea. I was watching the Supernatural episode Swap Meat and Dean orders a bacon cheeseburger "and fry an egg on top of it". I could almost taste the bacon and the cheese and the grease... it totally made me want it! Of course eating it would mean I'd probably not eat anything else for a week because it would be stuck in my stomach and intestines for at least that long. Though sometimes, just for a few minutes, it seems worth it.

Earlier this week when my Mayo appointment got set up, I sat down with my boss and told her a little bit about my condition. Of course, she seemed like she didn't believe me. I got the typical "I've never even heard of that" with the cocked eyebrow. Well today she ordered jimmy johns and had to show me the huge amount of onions they put on there. I don't like onions yet I couldn't stop staring at her sandwich. She even offered me half, but I've been on mostly liquids, smoothies, and yogurt for half of each of the past 3 weeks, so there's no way I could've. I showed her the bottle of Ensure I had had for lunch.

After all of these temptations today, I couldn't help myself and I gave in. My stomach didn't want much for food all day until I saw that freaking bacon cheeseburger in Dean's hands. I ended up having 3 cheesecake middles cookies and a cup of chex mix and a few other things that are okay only when my stomach is at least halfway working. It was too much for my stomach but I'm so sick of feeling empty and knowing I can't get full without making things worse. So now my whole abdomen is cramping in pain, my back and neck are in throbbing pain, and my head feels like there's a campfire in my skull and someone is throwing in full beer cans to explode them. My entire body now hates me and I just want to collapse.

As for my blog yesterday, I know I need to go to Mayo. I really hope they don't throw me out the door or shut me up with psychotropic drugs, though I am really afraid they will. I can't keep going like this, yet if they can't or won't help me I'm out of options. I'm really trying to hold on right now, but honestly it is incredibly difficult being positive or hopeful when you can't eat!

I have a pathetic homeowners association meeting tomorrow morning that I absolutely don't want to go to. Last year I was in the hospital when they held the meeting and now with the way I feel I don't know that I want to go listen to that absolute bullcrap. grrrr

So I'm going to go take the meds that knock me out cold for 12 hours and see if I can be awake in time to get to the meeting. *headdesk*

  Member Comments About This Blog Post:

GUTHRIESM 9/10/2011 7:26PM

    I was right there with you this week and I ate buffalo wings. Just 6 of them. They sure did taste good... but the effects were not so good. Feel better!

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ESMERM 9/10/2011 12:36AM

    Hang in there!

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Got the first set of records to go to Mayo - now reconsidering

Thursday, September 08, 2011

It's simple: about half of the records from my current primary clinic and the affiliated hospital keep saying 'need psych consult', 3/4s show doubt in most of what I've said, too many basically say 'can find no cause for the symptoms, nothing wrong'.

Now I'm doubting this Mayo trip. Reading these records will negate most everything I say - no matter what I say. This just shows that either everything wrong with me really is all just psychosomatic and due to mental health problems or pretty much every doctor who has seen me in the past couple years had no capability of listening to me. Will other doctors believe me or their colleagues?

My entire life I'd had to learn to live with whatever symptoms I have because there seems to be no way to find relief. Now I'm debating if I should just continue that. I'm so doubtful of everything now after reading what all those doctors said!

I so want to believe that Mayo could be my answer. I want to hope that they'll figure it out. What if they can't? I will have no hope left. If I go and all they do is request another psych consult I don't think I'll be able to handle it.

Back to the 'why' and 'what' questions, so I guess it's bedtime.

  Member Comments About This Blog Post:

BZARCHER 9/11/2011 8:15PM


I saw this through a friend's feed and felt I should comment.

My sister recently returned from an intake visit to Mayo. She's been dealing with Ehlers-Danlohs syndrome (and a lot of other related issues) for most of her life, and had a lot of the same experiences - Doctors saying it's in her head, misdiagnoses, or a constant stream of tests and medications that did nothing to make her feel better.

After just under a week of tests and interviews, she's been given a great deal of support, provided with a plan on additional treatment and followup visits, and finally feels like she's getting direction and ANSWERS for the first time since she was a teenager. It's made a huge difference and taken a massive weight off her shoulders.

It's very, very, very worth going. Please give yourself a chance.

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IVORY1825 9/10/2011 8:44PM

    Hopefully, Mayo will be smart enough to realize that kind of thing happens pre-diagnosis all the time, and they will ignore it. Usually, even if you catch one doc who falls back on that, others won't. I have fibromyalgia, and every once in a while I'll get a doc for something that ignores me, like the one that said my digestive issues were "stress". yeah, well, I ignored him and kept going and 3 years gluten-free later, I know that he was an idiot. I bet Mayo sees that all the time considering the kinds of things they deal with!

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JENNA-P 9/9/2011 3:23PM

    I think you made a great decision to go. I doubt that the doctors at the Mayo clinic would be quick to listen to other doctors. Most people who go there are second 2nd, 3rd, 4th (you get what I mean) opinions because they do not agree with what the other doctors have said. ALL of my friends that have been to the Mayo clinic, regardless of how many previous opinions they had were taken seriously and really did everything they could to investigate the symptoms. They are used to these things and they are fantastic doctors from what I have heard.

I think you should keep the appointment. I have learned over the years to trust my body and my instinct. If you aren't comforted by what the other doctors have said I think you are making the right decision. It won't hurt anything by going.

Good luck. I hope you find an answer to your symptoms.

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MOM2ACAT 9/9/2011 3:16PM

    I agree! Keep the appointment; just because that stuff is in your medical records doesn't mean the Mayo doctors are going to believe it.

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ESMERM 9/9/2011 10:52AM

    Do not doubt yourself, you know your body better than anyone. You need keep your appointment!

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Mayo appt is set up

Thursday, September 08, 2011

Apparently my Endo doesn't want me putting things off any longer. His office called Mayo Clinic and set up an appointment for me. Luckily, I didn't have to reschedule because I'll be able to take off work that day. Here's the plan:

Tues, Oct 18th I'm making the 3 hour round trip to Mayo for a 45-60 min consult with the GI team. I have to gather as many medical records as I can (this is going to be difficult!) and hand-carry them to the appointment. I think I might need to take a shopping cart to carry all that. At that time, they'll decide what tests they would like to run and schedule it over as many days as needed the following week. If they choose only a few, I might be there one day - but if they choose many tests I could be there the whole week. Considering the absolute mess my body is (well beyond just the digestive tract problems), I'm thinking it may be the whole week involving several specialties. The good thing is by doing it this way, I won't have to 'play it by ear' and keep calling into work to tell them if I'll be there the next day or not. I should know after the appointment how many days I'll have to spend there the next week so we can try to plan for it at work.

Last night I had a freaky dream and woke up about 430-445 and absolutely couldn't fall back asleep. I just laid there tossing and turning, barely able to even close my eyes. After about an hour I just gave up and went upstairs to lay on the couch for about 10 minutes before starting to get ready for work. Of course, yet another night with little sleep means today started the 3rd flare in 3 weeks. I am so incredibly sick of this! I guess it's a good thing my Endo is making me go to Mayo, because this needs to figured out.

I'm a little disheartened that I called my sister and she seemed too busy to care much about this and my parents are on vacation so they're not really interested in hearing about it. Of course none of the so called 'friends' on facebook give a rats rear. Yes, there's a reason I hate the question 'what's your support system like?' because I don't have much of one. Pretty much it's all you awesome sparkers that are my support system.

Well, bed time. I've gotta attempt to get some sleep tonight.

  Member Comments About This Blog Post:

MOM2ACAT 9/8/2011 4:55PM

    I hope you get some answers and that they will lead to treatments that will work for you.

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KKSTEIGERWALD 9/8/2011 11:02AM

    This is great that you got in, and ( relatively) soon! I truly hope that they can give you not just some answers, but help you get more control over your life and your condition. This has got to be such a trying experience over and over. I hope the day doesn't go too badly and that you can get some rest tonight. emoticon emoticon

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ANDREWS_MOM 9/8/2011 8:09AM

    I am so happy you got into such a great place! I really really wish I lived close to Temple as well.
Your setup sounds similiar to what mine was at Temple- I had the initial appointment where they also had bloodwork, ekg & full obstruction series done that day & then was scheduled to come back for 4 days of testing and then 2 weeks later a follow up.
That was all great BUT now trying to get back in touch with the dr is seeming to be quite a difficult task. I understand they're busy but I left 2 messages a week ago & haven't heard anything yet....guess it's time for another call.
I hope you find hope, relief & results from Mayo!

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Should I celebrate or should I cry?

Tuesday, September 06, 2011

The next time you go to the doctor for an illness or issue (not a healthy checkup), see how long your doctor allows you to talk about your symptoms before s/he interrupts you. On average it is 18 seconds before you're stopped and expected to listen instead of talk. Does your doctor examine your body besides the normal heart/lung check? There's a good possibility that answer is no. Many doctors have lost the ability to perform a thorough examination of the body and instead expect expensive and difficult tests to tell them what's wrong when they could've found it in a matter of minutes instead of hours or days. Who should be blamed: the doctor with a lack of empathy, the schools not teaching the doctors how to do anything but spout test results, insurance companies who stipulate patient time limits and minimum daily counts and expect multiple tests before any treatments can begin... or patients for allowing this? Maybe none, maybe all of the above. My point is: do we really get the best health care for our money?

I'm 30 years old, have received 7 diagnoses in the past year (and I know more are coming), and have probably had most of them for most or all of my life. Several of these conditions can easily be fatal, but they were overlooked for decades... why? I was telling my symptoms and my stories, but I wasn't being heard. I was researching my symptoms and trying to help point the doctors in a direction, but was told 'there is no way that'd be possible'. Was that true, NO! Today I feel validated.

I saw my Endocrinologist this afternoon. This doctor has actually listened to me, realized I'm smarter than people believe, and gets that I'm not a textbook case. He paid attention to what I brought up and put things together: he's thinking autonomic nervous system issue. Thing is, I've brought that up before and was told it wasn't possible for that to be a problem! This accounts for issues with severe adrenaline spikes, possibly my digestive issues, problems with heart rate and breathing problems, how I have both reactive hypoglycemia AND type II diabetes at the same time, how my hands and feet can be ice cold while my chest and rear are dripping with sweat, etc etc etc! Of course, this is still suspicion at this point, as the tests need to be performed to back it up. I mentioned to him I was considering heading to the motility clinic at Mayo and he said he greatly supports that idea and is sending down a referral to get me in there. He said since this has been going on for years it probably won't matter if I wait a few weeks or months to go (since it's so difficult to get off work), but there I will be able to get people from many specialties all looking at my issues together, because many seem to fit together.

So, should I celebrate the fact that I was smarter than the moron doctors who have belittled me and thrown me away for years, or should I cry that if this is an autonomic nervous system issue that it could mean something as bad as a brain stem tumor or an immune system issue that my body is attacking my brain cells. Well, I left my Endo's office and started belly laughing! I mean I actually choked up a few times because I was laughing too hard to breathe. I have months and years ahead to cry when they figure it out, but I can only bask in how smart I am for a short time.

I feel like hell. I don't really know what to do. I feel totally lost and I don't know what kind of future I can have. But at this moment I know I am smart. I lost a TON of brain power and thinking ability last year when I had to give up eating for a month and I've been fighting to get some of it back. This shows I didn't lose everything and there's a chance I could get back the rest of my smarts at some point. Of course, that means getting my body figured out and somehow made better so I can be around long enough to get my brain back to what it was.

For anyone who is interested in learn how to be a better patient and help your doctor to be a better doctor, here are some books to read (they're easy reads): How Doctors Think by Jerome Groopman and Every Patient Tells a Story by Lisa Sanders. Maybe you can help keep yourself healthy instead of ending up like I have.

  Member Comments About This Blog Post:

ANDREWS_MOM 9/8/2011 8:14AM

I am so happy you found a doctor with a brain and the ability and compassion to listen and care.
I think you will find a whole different kind of experience than what you are used to when you go to Mayo. I know I did when I went to Temple- They did NOT doubt anything I was saying and since it's their speciality they had actually seen, heard and understood everything I was experiencing.
I WISH I lived close enough to Mayo as it is the TOP place to go for just about anything! :)
Hope you have better luck w/ follow up & questions after all tests & appts than I do with Temple....arrrgh
ng & praying for answers & relief for you!

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    I SO understand what you mean and how you're feeling about doctors! I'm very fortunate - I have the best primary care doctor's office. All of the doctors in the practice are really good doctors who actually listen to you, however long it takes for you to explain what you're feeling. They talk to you, not at you, and welcome the fact that I come in knowledgable and not just expecting them to figure it out. I've actually also been in the position of pointing the docs to the correct diagnosis (that's how we discovered that I have GP). It's imperative that we arm ourselves with knowledge and not go to doctors blind.

I seriously hope that your test results come back more favorable than you're thinking. I also hope that all goes well at the Mayo clinic. And keep smiling and being proud of yourself - you deserve to bask in that feeling!

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DYA177 9/7/2011 2:05PM

    Thank you so much for your experience. I sometimes do wonder myself what Doctors think while I'm in their office. And you should laugh. You know your body than anyone in this world, doctor or no, so I'm glad that you found a doctor that has actually listened. And I hope that you get to go to the Mayo clinic. I hear so many wonderful things are happening there in Regards to getting a clear treatment plan for your ailments. Keep us posted and keep up the good attitude!!!

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ESMERM 9/6/2011 11:17PM

    I am so glad a doctor is finally listening to you! I hope you are able to go to the Mayo clinic soon.

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