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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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In a holding pattern

Tuesday, September 06, 2011

I've been considering what to say in this email to the Ellen show. I just don't even know where to start! I can be such a windbag sometimes, and having a 1500 character limit will make this difficult on me. I've set it aside for the past few days but I'm still thinking about it. Reading my horoscope in the paper yesterday reinforced this though, as it said something along the lines of if you have a big project that's overwhelming to set it aside for a few days and regroup then go back at it.

I've been so set back lately - 2 GP/CIP flares in 2 weeks has had me thinking about heading to the Mayo clinic for a consult for a possible G/J tube. No, I don't really want it, but the more flares I'm having the more I want to make this easier on myself. But once I get those, there's a good chance I'll have to give up working full time and that means giving up my house. I'm so completely torn between making my health easier to handle and continuing to live my life.

Anyways, I spent a large part of the 3 day weekend watching dvds. I did things around the house and even read a book while watching tv (I'm trying to give my brain a workout lately to attempt to get it back into 'shape'). I really want a vacation; no that won't happen.

Ugh I just feel so down lately. I've been asking the 'why' and 'what' questions a lot lately. My body is so drained from everything and I just don't know 'what' to do about the 'why'. I desperately want a break from all this, but now that winter is coming back, things are only going to get worse. Of course it doesn't help that it seems my Tubie Duckies have either been lost or denied up in Vancouver. Since I'm not on twitter, it's not like I can even ask Clif if he's seen them.

Well, off to bed, I need sleep.

  Member Comments About This Blog Post:

LIVINHEALTHY9 9/6/2011 8:47PM

    I hope you are feeling better.
I will have to read some of your older blogs to learn about your Tubie Duckies.
Please keep us posted.

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    I'm so sorry to hear how down you're feeling. I really hope that you have a better week and no flare ups. The G/J tube is such a drastic step - do you really feel that you're at that point? I know it's hard to really decide something like that when you're feeling down, so maybe some time to think about it more. At least going to the Mayo clinic you would have some of the best people to talk it over with. And sorry about the tubie duckies! Did the person in Vancouver at least let you know what happened with them or if he even got them? Hopefully they're not lost. I hope you were able to get a good night's sleep, and I really do hope things are getting better. Thank you for always being such a great support for us - I hope we can all return the favor.

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ANDREWS_MOM 9/6/2011 8:21AM

    I'm so sorry you're having these flare ups. This is an awful condition to have to live with. My gp has been ok lateley but about 3 weeks ago my delayed colon seized up and I'm taking the equivalent of a colon prep for a colonoscopy every 3 days and the 2 days in between is 3-6 doses of miralax....needless to say a pretty sick feeling all the time; I had to put in a call to the dr at Temple and waiting to hear back from him this week.

If you decide to go to the May Clinic- you are in great hands and they will be able to do whatever is possible to help give you the best chance at living your life in the most "normal" (or i should say as normal as possible for us) way avaialable.

If you do need atube- you may not have to give up your house. If you can't work- get a good lawyer (most would take on contigencey) and apply for social securit disability. It is a real life altering condition.

In all honesty, who in their right mind would hire me when/if i have to go back to work when my son's older? I'm in the bathroom a million times a day either when the gp is flaring to vomit or at the bathrrom after taking mega doses og laxatives for the colon?

I'd talk to a good lawyer. I have seen on the Inspire site's boards of quite a few who have gotten disability after the ususal long struggle they give to every new case.

I wish you the very best & a pain free day.


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My sparkfriends, please give me your opinion

Thursday, September 01, 2011

I've been debating something, and I don't know if I should...

My Tubie Duckie project can't move forward until I figure out how to make the ducks safer. I had used pieces of a thin cocktail straw with a piece of a twist tie inside it to hold it up (so it didn't stick straight out) then held in place with super glue inside the straw and around where it goes into the duck. That's not really safe to give to kids, so I need to come up with some way to do it safer. I know the best way is if I can design a duck where the tube is part of the actual mold of the duck. But I have no idea where to find a company that can make the ducks where it won't cost me thousands of dollars.

So I had an idea, but I don't know if I should go with it. Oprah might not be on the air anymore, but Ellen is making her way into the spotlight. I was thinking about sending an email to the Ellen show and asking if she would be able to help me find a company to do this project with me. I just don't know if this would get the attention of her staff.

I know I can't afford even a few hundred dollars to make these ducks. I have a single modest income, a mortgage to pay, several difficult medical conditions, I need to replace my car before winter (it was not running great last winter and didn't heat up enough to battle negative teens temps), my house has several problems that I can't afford to fix, and my paycheck gets me just enough to cover my basic bills, but the several thousand in medical costs so far this year has dwindled my savings (though I do have health insurance from my company or it would be much worse!), so adding anything else would put me in financial trouble. (I don't even know that I can afford to replace my car at this point, but I have to because of my medical conditions.)

Do I dare ask? Do I really think I could show enough need to have her and her staff help? I question it. Yeah, I do what I can to help others, but others do more. I just don't know.

Thoughts? Do you watch the Ellen show - do you think she would help me? The email page on her website only allows 1500 characters for your story, how would I condense the story to that? This blog has 2177 characters.

  Member Comments About This Blog Post:

SCOOBADELIK 9/4/2011 11:30PM

    I agree with the others. You don't know what can happen until you ask, and it doesn't hurt to ask. You don't want to ask yourself later, "what if?" Let us know how things go. :)

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LIVINHEALTHY9 9/4/2011 9:26PM

    I agree, what do you have to lose? It won't hurt to ask anyway.
Best of luck to you!

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MOM2ACAT 9/2/2011 2:59PM

    I think asking Ellen is a great idea! I would go ahead and ask, the worst thing that would happen is that you would not get a response, but if she says "yes", you won't know until you ask!

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Horrible night turned into a very trying day

Wednesday, August 31, 2011

If you read my rambling blog from the middle of the night, here's the update.

At midnight I called the plumber and left a voicemail. I was so worked up I couldn't get to sleep so at 2 am I called work and left a voicemail that I wasn't going to make it in. I laid down in front of the tv to try to relax (I fall asleep better in front of the tv but stay asleep better in my bed) but it wasn't until I was halfway through The French Mistake episode of Supernatural that I finally dozed off - about 4 am. Unfortunately, I forgot to turn off all my alarms so at 6 am I was woken up. Plumber called at 715 am to say he'd come about 9-10 am - I asked him to call and wake me up when he was almost here. I finally dozed off again (with bad dreams about all this) about 9 am, then was woken at 930 am that the plumber was almost here. Yes, that means I'm going on only about 2 1/2 hours of sleep. Yes, that means my DTP is going to flare.

He spent a couple hours dismantling and tearing apart the machine to get it out of my house, then since I can't afford to replace it, he just looped the pipes so I can replace it later if I choose to, or not. He got out of here about 1215 pm, but the final inspection/approval of the sump pump work from Monday was at 3 pm so if I went to bed I might not have woken up. I did some things online and read a little bit of a book. Once he was done I turned in the paperwork right away so hopefully I can get a refund check back from the city faster (they're paying me back about half of the sump pump work). Now I'm back home trying to have some form of dinner and hoping to be in bed very soon.

Since I know a lack of sleep causes my DTP to flare and eating during a flare will just make everything so much worse, eating solid food is pretty much out of the question today. I've been playing around with tossing stuff into a cheap blender and having smoothies instead, so when I first ate after the plumber left, my lunch was a banana, mango peach frozen yogurt, applesauce, fat free plain yogurt, and french vanilla instant breakfast powder. I'm finishing what will be my dinner now - banana, applesauce, fat free plain yogurt, and chocolate malt instant breakfast powder. I've also found my stomach doesn't really fight rice krispie treats, so I had 2 of those in between as a snack. That's 956 calories and my stomach is hurting, so if I can sleep at least 8 hours tonight I will probably drop 2 lbs by the morning. DTP sucks!

I can say 2 good things here: 1) it is lucky that I decided to put my bedspread back in the dryer for 20 more minutes before going to bed otherwise it could have been days or weeks and a lot more damage before I saw the leak 2) I'm glad I found a decent plumber who is willing to come out quickly and who isn't looking to shaft me on the cost.

Lastly, Clif just posted more pictures of the ducks and I still don't see my Tubie Duckies. The tracking showed it was delivered yesterday late morning... I'm starting to wonder what happened to them.

  Member Comments About This Blog Post:

MOM2ACAT 9/1/2011 3:41PM

    I hope you were able to get some good sleep! emoticon

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KKSTEIGERWALD 8/31/2011 9:44PM

    SO happy things worked out well with the leak and the plumber. Get some rest and i hope you're feeling better tomorrow (and have a better day).

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A good day just turned horrible! :-(

Wednesday, August 31, 2011

I was having a really good day today. I was relaxed, I got things done, I was okay with going back to work tomorrow. My bedspread was finishing up in the dryer so I could go to bed. Of course things were going too good to be true.

I go in to grab my bedspread to find water all over the floor (this is in a room the size of a medium bathroom that has all my mechanicals in it). The pipes going into the water softener are leaking like crazy. I turn off the main water supply and try to push the 'push here to bypass' button. As it gives in and moves the pipes exploded! Water went flying everywhere and I can't find all the plastic pieces. I own my house and the softener was installed by the *expletive* previous owners and is owned so it's not like I can just call a company to come fix it.

The plumber was just here on Monday to fix the code violation from when they built the townhomes, cutting a hole through a wall into my closet and another outside to have my sump pump drain outside - $750 I can't afford (the city will refund me $347.50 in a few weeks because they forced me to do the work). The inspector is coming tomorrow to approve the work. So I just left a voicemail for him to ask when he can come back and see if he can help with this problem. Another several hundred bucks I definitely can't afford!

This house is an absolute NIGHTMARE! But more than that, this is just another example of my curse that I can't get one problem handled before several more fall in my lap. This has been going on my entire life - people often think I'm exaggerating... well after just a couple months my therapist realized I was serious and after a year she's so dumbfounded with how it just continues on and on that she can't even keep up with the problems let alone have any advice of how to handle them!

I can't even sleep now because I'm so upset and I have to be up for work in less than 5 hours. I've already taken 2 days off, and I think I'm going to have to call in and not go in because I'm so rattled I'm not going to be able to get to sleep for awhile which means I will end up in yet another GP/CIP flare (I just stopped one this weekend!). Honestly, why in the hell am I cursed like this?!?!

Anyone out there thinking I should trust God or that he won't give me more than I can handle, please save it. I've spent years asking, begging, praying for God or the angels or whoever to help me and all I get is more hell. When I was being killed I asked him to take me - yet I had to live through something you couldn't even handle to hear about that has destroyed so much of who I am and my life. Trusting in God and praying for help only makes things worse. I do many things to help others, I donate time, support others, help my friends as much as I can, but it seems no matter how much I do I get kicked in the teeth. Putting good things out to the universe doesn't bring good things back to me, but I still do it because other people need help.

BTW, my Tubie Duckies arrived in Vancouver this morning... I looked at the picture Clif posted and didn't see my ducks. There is one that might be one of mine, but then where's the other? Why do I get the feeling in a week it will be showing back up at my door having been rejected for some ridiculous reason.
emoticon emoticon

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KKSTEIGERWALD 8/31/2011 4:14PM

    emoticon emoticon

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MOM2ACAT 8/31/2011 3:25PM

    emoticon I know what you mean about people saying "God only gives you what you can handle"; I hate that saying too!

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ANDREWS_MOM 8/31/2011 7:39AM

    emoticon emoticon emoticon

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RORYLYONS 8/31/2011 2:40AM

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