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A few updates

Wednesday, February 08, 2012

This weekend my mother and I got a caringbridge started for me. It's nice to see some extended family and my parent's friends interested in my health. Though, to be honest, I like the support here on SP and I'll end up telling more here than I will on the caringbridge because I've found several people here that understand what's going on, while most of the people there won't understand it.

Yesterday I talked to the Genetics dept at the U of MN. They can't get me in sooner, but I got more information about what's going on. If I'm willing to pay out of pocket to go to the U of WI for the initial clinical (physical) exam and they determine that the full DNA testing is necessary, U of MN should be able to get me in to a genetics counselor much quicker - then the DNA testing would be covered by my insurance. I'll take what I can get! Just goes to show that thinking outside the box and trying to make it a win-win-win situation can get you farther than giving up because 'it will be too expensive' or 'you'll have to wait for a long time' or 'the condition is rare so you don't have it'. Plus as I told the geneticist at U of MN my signs/symptoms, she seemed to agree that the most dangerous form of Ehlers Danlos is possible.

Today I heard from my dermatologist's office. The fungal and bacterial cultures showed no growth, so neither one of those is the culprit for the sores on my foot. The blood clotting tests showed no problems, so that's good. They strongly urged me to keep my genetics appointment, which makes me think she's also considering this as a potential sign of Ehlers Danlos. They set me up for another appointment for the 24th, right before I head to WI. I'll let her have another look right before I go to the genetics appointment.

I'm still working at it, still fighting, and who knows what the next few weeks will bring into my life. But I'm trying to hope that things will be getting better. Besides, I'm hoping to start planning a trip soon: to go to Georgia in the fall. I have something to be working for and looking forward to.

  Member Comments About This Blog Post:

EAGLES_WINGS 2/10/2012 1:22AM

    You seem like you have a few answers shaking out for you. I hope that all the tests reveal a treatment path. You have got plans and that is great! You are making it happen. Keep up the awesome perseverance. Hopefully the Caring Bridge is a helpful tool. It may relieve some anxieties as you find another outlet to communicate with family and friends en masse. You are making great strides! You go for it. It will all be worth it when you see results!
emoticon emoticon emoticon emoticon emoticon

Take care, Karen emoticon emoticon emoticon

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SIERRA551 2/8/2012 4:06PM

  Hopefully your getting closer to some answers. I agree always have something in the future to look forward to.
I have missed so many days of work with Gastroparesis and having my Sigmoid removed I am losing my house. My Dr. did start me on Domperidone. It has helped. Seems like some days more then others.

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AYLEA56 2/8/2012 4:04PM

    Glad to hear you are starting to receive some positive movement towards an answer to your medical issues. All my best to you as you continue.

Planning a trip for Fun is always a Good Mood enhancer and certainly helps.
I love planning trips too!


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ANDREWS_MOM 2/8/2012 3:54PM

    It sounds like you amy be getting closer to some answers. I'm happy that you have found some dr's willing to help you and be open to ideas/possibilites. I pray for nothing but the best for you.

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MOM2ACAT 2/8/2012 3:42PM

    emoticon I think that is great that you are planning a trip! It's a great goal to work towards.

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Good news and bad news

Thursday, February 02, 2012

Bad news first: my insurance company is continuing to deny paying for my pantoprazole (PPI). I have another chance - this morning I had to lodge an appeal by stating my case over the phone. I was half asleep, so hopefully I got the point across that when someone has gastroparesis and GERD, without a PPI it's actually dangerous.

The good news - bugging the GI's office personnel finally worked... I just had to ask the right person to get involved and he helped make things happen. They turned in the paperwork to my work today to extend my FMLA out for the rest of the 13 weeks, ending 4/11. I can go back sooner, but I so did not want to have to keep trying to extend it. I don't know if they turned in the 2nd copy of the short term disability extension paperwork, but the HR guy at work said he would try to contact the company and see if he can send them my FMLA paperwork if they hadn't received the other paperwork.

In addition, now that I have some ideas about how to handle the problem with my foot, it's feeling slightly better. Not sure it will last, but I will take short term not so bad and possibly back to bad over constant bad. One of the things I'm trying is today my dad took me to the store today to buy toe socks to keep my toes separated and hopefully dry. Worth a try, right? I also got a haircut (nothing major, just chopped off the couple inches that were bothering me. Plus I finally got a chance to try my PT again, and it wore me out quite a bit. Will see if I can get out of bed in the morning.

Plus my mother is helping me to start up a caring bridge website because my mother is being overwhelmed by family asking what's going on. So that will take up some time in the next few days, as will several other things I have to try to get done. Needless to say, I'm about ready to sleep for a few days straight!

One last thing: I just want to send a shout out to my friend Glo who isn't on SP but has been reading my blogs to try to keep up with everything going on. THANK YOU for all your support! I've missed getting to talk to you during the week. If you have any problems while I'm out of work, let me know and I'll do what I can to help out.

  Member Comments About This Blog Post:

EAGLES_WINGS 2/4/2012 9:54AM

    You sound like you are getting it together even if you are tired. I finally got on the meds I need to combat fibromyalgia. It is a tough process but you have the will to make it happen. That's so great. I had so much trouble with physical therapy for a while but now I do aquatic therapy and it is getting better. I hope that you can hang in there while the process happens! My best friend has gastroperesis and she struggles so much with everything. She is now getting a medication from Canada. I do not know how she is paying for it. I would have to ask. Though she is going to Strong's now. If that doesn't work out she will need to go to Philadelphia. We are in upstate New York. Well, I will keep you in my prayers! Keep fighting the good fight!
emoticon emoticon emoticon

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LIVINHEALTHY9 2/2/2012 8:05PM

    Glad you were able to get your leave extended and now you can concentrate on your health.


Comment edited on: 2/2/2012 8:06:24 PM

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MOM2ACAT 2/2/2012 4:39PM

    I have a Caring Bridge page too; it's an easy way to keep everyone informed without having to play phone tag or send out a bunch of emails.

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Leave it to a dermatologist...

Tuesday, January 31, 2012

...to find yet another link showing I have a connective tissue disorder. Looks like we found the problem with my foot: www.epodiatry.com/chilblains.htm If you read the last star carefully, it says:
* a very rare occasions the chilblains may be a symptom of rare medical problems (eg connective tissue disease or a bone marrow disorder)

Does anyone else think that part of the cause could be my joint hypermobility (which is possibly Ehlers-Danlos) mixed with the problems of my autonomic nervous system never knowing when to sweat and when to shiver and the cold but wet climate of MN? hmm Have to wonder why none of the other doctors thought of this. At least I have a viable answer (as opposed to eczema randomly occurring between my toes psh) now and ideas of how to stop it from happening. Also, I asked her about a couple other little things that I've had forever and those little things (none of which are a big deal) have more to treat them than the problem with my foot. Afterwards she had swabs taken on my foot to test for bacteria and yeast (checking for infection) and had blood drawn. That's 9 tubes drawn in just over a week, and I'm feeling extra lightheaded and weak. I'm quite sure I'm quite dehydrated so I'm planning a trip to the ER soon for some IV fluids. I was going to go tonight, but if the paperwork from my GI doctor's office isn't turned in tomorrow, I'll be going in and asking to be admitted to the hospital. The next paragraph explains more.

So here's the bad news: my GI doctor's office in Philly lost my FMLA and short term disability paperwork! I've called over and over again and the doctor's assistant refused to even talk to me about it - going so far as to put me on hold for over 10 minutes before I had to hang up because I had to go into an appointment. Finally I called the office manager and left him a voicemail about how important this paperwork is (without it I have to go to work or get them to check me into the hospital and ask a doctor in there to fill out the paperwork). He got involved and a few hours later I got a call from the woman who was dodging me who said she couldn't find the paperwork and asked me to fax new forms ASAP. So I called the STD company and asked them to re-fax the continuation paperwork then gathered the FMLA paperwork and booked it to the grocery store to fax the documents to her while calling to let her know it was on the way. I hope she does it right away so it can be in to work in the morning. Seriously, for as great as my GI doctor and most of his staff is, the person working right under him needs to realize that patients are people and customers, not play toys and vermin.

I've not been able to do my PT because I'm too exhausted and just 45 minutes of doing simple movements in the PT office wore me out for 48 hours. That's not normal! So I'm not sure about continuing it at this time. Plus with me being unable to put any pressure on the front half of my foot right now (due to the horrible pain) it seems like it's just too soon.

  Member Comments About This Blog Post:

LIVINHEALTHY9 2/1/2012 8:45PM

    Boy you just can't catch a break. It takes a lot of courage to keep pushing when there are so many incompetent people trying to thwart you at every turn.

Hang tough!

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IVORY1825 1/31/2012 11:05PM

    Man, can I use you as a full year case study for anatomy and physiology? At least you got the paperwork thing partially worked out for FMLA! Speaking of you as a case study, we learned about connective tissue in class today, and I asked my students where you find it, and one asked if it holds up internal organs because he remembered reading that (they remembered things, yay!). I said it TOTALLY holds up internal organs, and I even know someone who has CT issues and her organs tend to fall out of place.

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Today, I feel like I'm alone in my fight

Friday, January 27, 2012

Today is one of those days where I feel like I'm fighting the battle against my body all by myself. So many people are being negative saying "you can't get that treatment", "you think it's hard getting short term disability, try getting social security disability, because you won't", and "your insurance will never cover that testing" plus more. Why does everyone feel the need to tell me that I can't have what I MUST HAVE to live a productive life? WHY AM I THE ONLY ONE TRYING TO BE POSITIVE ABOUT THIS?!?!

I have 2 doctors that can extend my short term disability past 1/31. Neither one is stepping up and either extending it or saying they won't. My GI doctor said he would, but he won't turn in the paperwork. My primary doctor is the one who started it, but she's balking at continuing it, even though it's not getting better enough for me to go back to work. Just 45 minutes of simple physical therapy is wearing my leg out to where I have a hard time walking again. Imagine how impossible it will be for me to work 8 1/2 hours between sitting, standing, and walking! I have horrible sores on my toes on the same leg and they keep getting worse - nothing is helping it so now I'm going to see a dermatologist, yet apparently having serious pain in my foot isn't enough to warrant keeping me off my feet. My gastroparesis is not responding well to treatment, but my GI doctor isn't in a hurry to fill out the paperwork and my primary doesn't think that being unable to eat enough calories to keep my body from eating its own mass warrants keeping me out of a high stress job. She believes most people with gastroparesis live perfectly normal lives with just a small change in diet - which my GI specialist scoffed at.

Work wanted to know TODAY whether I'll be back on 2/1 or not, but I can't get anyone to answer! The boss can't understand what's going on, so they don't understand how bad this really is. I'm fighting with every bit of me to try to make my body work the way it should, but to get the doctors to help me, to get work to put up with this, to get my family to understand and stop dragging me down with the negativity, and to make my own brain stop telling me to give up because the fight is no longer worth it. But I've promised several people I will KEEP FIGHTING as long as I can possibly do so. I'm trying, I'm really trying!

I'm so desperate for a helping hand to guide me through this hell that is the medical field. I'm desperate to have anyone honestly tell me that this can somehow get better and then actually step up and help make it better. I'm desperate to have those around me that I absolutely must count on right now to stop telling me NO and start telling me THIS IS POSSIBLE.

I'm glad to know I have the weekend starting so I can attempt to relax a little... even though I will probably be dragged down all weekend knowing how horrible things are going to be next week if it continues the way today has been.

Edit: Just got an email from my primary doctor and she said maybe I can go to a neurologist but not until after the dermatologist appointment. Yet she's completely deferring all short term disability to my GI doctor. Which means if he doesn't turn in my paperwork first thing Monday then I have to be back to work on Wednesday. I have a feeling I will be cancelling all the appointments I've made past Tuesday because I will have to go back to work or go to the ER. I'm ready for these doctors to stop causing panic and terror in me!

  Member Comments About This Blog Post:

BJALEX5 1/31/2012 11:32AM

  So sorry it has been so difficult for you. I am keeping you in my prayers. You must be an amazing person because you are dealing with physical illness, Doctors and insurance hassles plus you still take the time to Spark and support others. Give yourself credit for that. Many people in your position would not be thinking of others or have the energy to reach out. Hang in there.

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LOLADUVALL 1/30/2012 11:46AM

    Wow. I really hope your GI doctor steps up to the plate and gets the paperwork today.

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AYLEA56 1/28/2012 3:38PM

    Praying for you to get the assistance you need, as in your Dr's filling out necessary paper work and so forth.

Many emoticon

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MOM2ACAT 1/28/2012 2:32PM

    emoticon I wish I had a way to help you.

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LIVINHEALTHY9 1/27/2012 8:05PM

    I wish I had some answers to help you navigate the healthcare hell. Unfortunately, I don't , but I can be here as a friend.
I can only imagine how frustrating it must be to be kept in limbo where your health, job, life is concerned.

Don't give up. Keep fighting.

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EVWINGS 1/27/2012 6:17PM

    To start with, you are not alone! You have all of us and we love you. BTW - you CAN do anything you need to in order to get this resolved. Monday AM you need to call BOTH drs and tell them this is it. Either they get off their duffs to get you the extensions or you are going to be forced to get an attorney to fight for your rights. And one way or another, the BS stops right then. Ask them if they ok you to go back full time to the job you are doing? If NO, give you the extension. If yes, you'll see the lawyer. Up to them, but you HAVE to have an answer THEN!! Wish I was closer to be with you through all this. Since I'm not, these big ol' emoticon will have to do!!


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If a TVD original earned $22k/yr their whole life...

Wednesday, January 25, 2012

Not trying to start a political debate, but I thought I'd share this link because I can relate it in a funny way to a show I'm a fan of.


I'm a fan of the Vampire Diaries, who has original vampires that are 1,000 years old. So I found that if Mikael, Klaus, Elijah, or Rebekah had earned $22,000/year for their entire life they would make as much as this candidate (and probably many others too!) does in one year. haha (Putting a funny spin on it takes away some of the sting.)


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