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Good things today

Wednesday, December 21, 2011

I saw my primary care doctor today. She was open to the condition I brought to her condition that almost exactly matches my symptoms and issues (I showed her and explained the symptoms/signs I have before telling her the name of the condition). She referred me to another specialist as a next step towards proving the diagnosis. Once I get a little closer to getting this proven I'll talk about the condition and what it means. I don't want to scare everyone until I have a better idea that I do have it.

Also she signed off on FMLA so I can have my job protected as I go to all these doctor appointments and for any days that I just can no longer stand the pain and problems and need to leave work to rest. Plus she signed off for me to have disability parking for a year. This will be a great help for me when I'm exhausted, since I'm pretty unsteady on my feet lately and with MN winter upon us and the horrible fatigue and pain continuing to get worse if I have to run errands it will save me some time, effort, and steps. Of course I'll only use it when I need it, but I'm glad to have the option now. I took the paperwork right to the DMV and got a temporary permit until the placard comes in a few weeks.

Earlier this week I bought some shapewear - for most people it 'evens out the lumps and bumps' for a smoother body shape. For me, it seems my organs are not where they should be and the more I sit and stand the worse the tearing pains are in my abdomen. I've worn this shapewear (looks like a swimsuit except it doesn't cover the chest) for 2 days now while at work and it has dulled the worst of the pain (even though it's creating a few new pains) and is making it a little easier to make it through the days. It's helping me to eat just a little more calories in the evening/night so I can get more like 1000-1200/day instead of 800-1000/day. Nowhere near what I need so I can stop losing weight, but it's better than nothing! And yes, I realize the irony of having to wear shapewear when I'm underweight to attempt to slow my weight loss.

My parents are coming up tonight to stay with me a few weeks and help out. In the next few weeks work is going to be horrible and I'll have to put in overtime while also trying to deal with doctor appointments and my quickly deteriorating health.

Tomorrow I have an appointment with a different GI specialist to review the problem with my liver - and hopefully give more proof for the condition I'm working towards getting diagnosed.

One last thing - don't forget to check out my new sparkteam:

This team is about figuring out the little things we can do each day to get a little closer to our goals. We are supporting each other no matter what each person's goals are or what challenges we're dealing with. It's all about choosing just 1 thing (or a few things) that you can do for today that won't overwhelm you but will help you get closer to your goals. No one is perfect, but small changes do help move us forward!

  Member Comments About This Blog Post:

MOM2ACAT 12/23/2011 10:40AM

    I'm glad you have the FMLA time to use.

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AYLEA56 12/22/2011 4:02PM

    I am glad your parents are coming to help you out, with all that is on your plate right now. I am currently bot working and glad my husband is okay with that. Though the extra $ would be nice.

Hope your Holiday time is still lovely if you celebrate.

I will definitely check out your new team. Though it may seem daunting to me at times. It would probably be very good for me.

emoticon for all you do!

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Check out my new sparkteam!

Sunday, December 18, 2011

I'm still working on setting it all up, but I just created a new sparkteam I'm hoping some of my friends will join in on.

The point to the team is to encourage everyone to do a little better every day; do small things to get closer to your goals and to help others. It's amazing how quickly the little things can add up.

It will take a little while before I can get the team all set up, but I'm hoping my friends will come join in and help me grow it into a great and supportive sparkteam.


The exhaustion just keeps getting worse.

Tuesday, December 13, 2011

I think I'm getting more exhausted every day. I'm desperately wishing I could stop working for a few weeks//months while my health issues get figured out. Within 2 hours of getting to work I'm already fighting to not fall asleep or collapse from exhaustion. But without a job, I have no income and no health insurance. It's really sad that in America a person has to fight the medical community and still keep working full time when their health is so bad they can barely move without falling over or being in serious pain.

There is non-stop stress in my life. The hospital I went to the day before Thanksgiving billed the completely wrong insurance company. My current insurance company wants to charge me $260/month for the dexlansoprazole that the doctor in Philly just prescribed for me (I was less than $50 away from my out of pocket max, but starting 1/1 I'm on a new insurance and will probably have to pay $200/month for it, or convince him I need a different medicaiton). At work today someone decided that everyone has to have the same email signature... and no one thought ahead, nor did anyone understand how to set it up... except me. So I did it for 15 people plus myself. My parents need to go home, so starting tomorrow I'll be alone again. Etc, etc, etc. Plus my digestion is getting even worse, so I'm about ready to give up eating entirely, until I can get the domperidone in me for several days. But...

Today at work I was thinking. The tests at Temple showed that my intestines are crammed low in my pelvis, which probably means other organs are sliding lower too. I have a genetic defect where my joints are too loose, which might mean the connective tissue holding my internal organs in place is stretching, hence why everything is getting out of place. This would explain so much, including the tearing and squishing pains in my abdomen and chest. It also explains why after I eat my lower abdomen sticks out ridiculously far. If I'm right, that means I must have surgery to put everything back. But unless Dr Parkman considers any of this being a possibility, it won't be addressed. I don't know... everything about me is so abnormal and I don't know what to think anymore.

What I do know is that I have no interest in doing anything but laying in bed or on the couch where I can sleep as much as possible, minimize the pain, and get rid of some of the horrible stress of my life. Of course, at this point, the only way that will happen is if I literally collapse at work and they can't wake me up.

Sorry if this is a little depressing. The exhaustion has taken a real toll on me.

  Member Comments About This Blog Post:

PETUNIABETH 12/14/2011 11:06PM

    Stopped in to read you blogs by request of a common friend - andrews_mom. I am so sorry to hear of you pain and struggles. I am praying for you! Noone should have to endure the hardships that you have been through, especially during the holidays.. I pray God will bless you and your family with mercy and grace through these hard times. Don't give up hope! You will find answers and a cure soon. Bless you! emoticon

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MOM2ACAT 12/14/2011 12:50PM

    emoticon I am exhausted too, even though mine is for a different reason, I know how frustrating and depressing it can be.

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IVORY1825 12/14/2011 11:42AM

    Yeah, US Medical System is all f-ed up.

Hey, from a scientific perspective, I'm totally interested in this genetic condition where your joints are loose, and how that might affect other connective tissue in the body. Does it have a name or do you know more about it? I teach Human Life Science and I'm always looking for interesting examples for my students.

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A few results are back and I'm starting treatment.

Friday, December 09, 2011

Quick entry: got some results today. Doctor added yet another test, but they were able to get me right in today (even though the test took a long time). This one was drinking barium and having them take pictures and watch it flow through my digestive system. (They found my intestines are cramped into the bottom of my pelvis - kinda explains a lot.) More results will trickle in over the next 2 weeks, but he's confident enough that I have gastroparesis because my emptying study showed delayed emptying. (After 2 hours I still had food in my esophagus and at 4 hours I still had over 1/3rd of the food in my stomach - it should be less than 1/10th.) So he's putting me on Domperidone and a stronger PPI. I have another appointment for 1/23 for follow-up.

I'll post more soon. Tomorrow the awesome gal at the hotel is sending my dad and I on a tour of Philly, so not sure if I can type out more after that.

  Member Comments About This Blog Post:

NIKI778 12/12/2011 10:24AM

    So glad someone finally listened to you, and that you are starting a treatment!!! Hoping that things start going better for you now.

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IVORY1825 12/11/2011 5:53PM

    So so so glad to hear that things are going well!! Hope you are enjoying Philly, and too bad that you probably can't much enjoy a Whiz wit cheesesteak.

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ANDREWS_MOM 12/11/2011 5:35PM

    Good for you! I knew that they would be able to help you. Dr. Parkman is the best. I am so happy you are finally get some answers and treatment.

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LIVINHEALTHY9 12/10/2011 8:58PM

    I am so glad to hear that they are actually getting some answers from the test results.

I hope this is the start of your road to health.

emoticon emoticon

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BYEPOUNDS 12/10/2011 12:05AM

    Best to you!

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I'm unique, but I'm also abnormal

Thursday, December 08, 2011

Today I had an esophageal manometry (manometry is testing the muscles and pressure in an area of the body) and rectal manometry. Both were difficult and very painful for me. Still I kept trying to crack little jokes and keep my spirits up. Then I laid on a stretcher for 2 1/2 hours waiting for my endoscopy and to get my pH meter placed. When they took me back it was a flurry of activity but I was still awake... then suddenly I was waking up. I had to have extra anesthesia to knock me out, so it took almost 2 hours (from what I was told) after the procedure was done before I was even semi-awake. I've been in non-stop pain since then. The pH meter is a thin tube that goes down my nose and into my esophagus. My throat and esophagus are HATING it and keep trying to reject it. I tried to eat a little, but it just hurts too much. I barely got back to the hotel and I had already lost my voice. My body just does not like foreign objects!

When we got back to the hotel I looked at the results of the endoscopy and to be honest I'm partly relieved and also quite worried. Both my pylorus (opening from the stomach to the duodenum) and the 2nd half of my duodenum (which feeds into the top of the small intestine) are deformed. The findings also say "The second part of the duodenum appeared to be abnormally located." The bad part is obvious: there's clearly something wrong. The good part is they found something wrong that all those other doctors missed or didn't care to find! The procedure notes say: "The upper GI endoscopy was technically difficult and complex due to unusual anatomy." I want to go to a few previous doctors and say "na na I told you so".

Everyone there has been so great to me, doing little extra things to help me and being kind. I asked my dad to stop on the way back to the hotel to get a thank you card that I can give to the department tomorrow. It's not much, but I wanted to show my appreciation.

The people at the hotel have been really great too. If you're ever going to be in Philly near city hall and the convention center, the Hampton Inn at 1301 Race Street is a great place. See if you can meet Stephanie Stephens - she's been absolutely incredible to us. Many others have been kind and taken a few minutes out of their day to help me out as well. (If you're in town to go to Temple, it's 3.5 miles away and almost a straight shot.)

Tomorrow I should get at least most of the results (biopsies from today's endoscopy will take about 2 weeks). I'm curious to see what the doctor's take is on all this and how he wants to treat it. Though I'm also scared to find out what will happen. I have all the worst possibilities staring me down but I'm trying to ignore them until I know for sure. With all of the knowledge I have I can scare the heck out of myself with what is 'possible', but I don't have quite enough knowledge to know what is 'probable'.

  Member Comments About This Blog Post:

LOLADUVALL 12/9/2011 3:52PM

    Finally. At least now they can chose a direction in which to go and hopefully a helpful treatment. I'm so glad you may have some relief in your future.

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MOM2ACAT 12/9/2011 3:41PM

    I'm glad that you have found someone who believes you and has taken your condition seriously; now I hope you are on the road to getting a treatment that will make you feel better!

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MANDI99P 12/9/2011 9:54AM

    It seems like a weird thing to say, but I'm so glad that they found something wrong. Its just that you have known that something was wrong for a long time, and now you have the test results that prove that. I know that I have said it over and over, but I am so proud of you for staying strong and fighting. Try not to get to stressed out untill you know all the results and treatment options. I'm sure there will be choices to make, but it sounds like you have finally found some great doctors that with help figure out the best treatment plan for you. And of course, I will be here whenever you need me.


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