Archive for June 4th, 2013

Thank You Hubby!

I want to take a moment to say THANK YOU to my husband.  We have had many hard years, since the beginning of our relationship – 13 years ago.   Such as: his mom passing away due to pancreatic stage IV cancer, our new responsibilities of managing her ‘estate’ and his disabled brother, his other siblings no longer talking to us, me getting diagnosed with gastroparesis, the loss of my job, the sale of our home (to make ends meet) and many other issues.

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We ALL have hard times, I know.  I just amazes me that our relationship has been tested so many times and we are still together, happy and maybe even stronger than ever. 

He understands what is wrong with me and does all that he can to make life a little easier for me, while he works a 10 – 12 hour day.  Some days being called into work before his shift or on a day off.  That is the life of a manager!  He is great at what he does and I fully support his career decisions.  This latest may move us to a location of the US that I will not have a very good health care provider.  I am okay with that, as I feel that I am on top of my GP the best I can be.  And working with a couple non-profits, I feel that I have a leg up if there is any new development that may help me; unlike most of the doctors! 

I didn’t intend for this to be that long.  Just wanted to tell him THANK YOU for all that you do for me, your understanding, your support and most of all your patients.  I know when we try to plan things and I get sick, it is hard!

 

My GP Story – Part 3 – The END

There is not much more to tell of my story.  Last you would have read was how horrible my GI Dr was in Part 2  (https://melissagpfight.wordpress.com/2013/06/03/my-gp-story-part-2-1st-gi-dr/).   And in Part 1 (https://melissagpfight.wordpress.com/2013/06/02/my-gp-story-part-1/) was the process was for me to finally be diagnosed with gastroparesis and my theories as to why I have gp.  I also posted about my experience with the Gastric Emptying Study and my thoughts of why I do not feel this test is accurate (https://melissagpfight.wordpress.com/2013/06/03/my-digestive-study-gastric-emptying-study/).

After I decided not to ever see that horrible GI Dr again, I searched for a new GI Dr.  I was not about to go through my Primary Care Dr…. since she sent me to this quack to begin with and said how wonderful that establishment is.   It really boils down to that the GI Dr’s group is part of the same pocket of money as my Primary Care Dr.  So why would the send me someplace else?!

ImageI called the 2 GI Offices we had left in my town.  The one would not return my call and the other did after 2 months.  I was looking for an office that understood gastroparesis, or I was not going to bother to even go!  The call came in and I was told that a GI Dr just moved here (WA State) from NY and her primary focus is on gastroparesis.  Say what?!  I was so very happy.  I jumped the hoops of a referral and waited to hear from them.  The time went quickly and I got a call to set an appointment.  The gave me 3 weeks out as their ‘first available’, but when I found out it was only with her assistant, I said no.  I want to see the doctor!  I was then told there was a long wait.  I told the receptionist that I have been ill for this long, I can wait.  I think it was a 2 month wait.  But I got to see who I wanted and it payed off big time!

The office visit was almost 2 hours long.  She ordered a ton of lab work and listened to everything I had to say.  She told me that the Gastric Emptying Study I had done was not accurate, since it wasn’t for the full 4 hrs and told me she is having a hard time in this town trying to get them to do the correct 4 hr test.  At this time, my town will not do the 4 hr test.  Anyway, she felt by what she was reading and what I had told her, that I do not have GERD and the medication is just a waist of money.  I could do a test in the office to verify if I have GERD -I declined, for now.  Then, she was telling me about a low does antidepressant that she wanted to try.  And I said, ‘for the Brain – Gut Theory’ and she smiled (being caught off guard) and said, ‘yes.  i am impressed of how educated you are on your condition’.  We then chatted about how I have to be, as a lot of Drs don’t seem educated enough to help.  I was given her home number and to call her at anytime.  She left the follow up with her as, ‘if you feel the need to come in and talk, make an appointment.  If not, we can do most of this over the phone’.  It was wonderful to have a medical professional treat me in this manner and I felt like I counted!

I had talked with her on the phone several times.  Mostly to change meds, as the ones she ordered I would have reactions to.  After the last one we tried didn’t work, she told me how sorry she was but we have run out of options.  If I could not maintain nutrition then we may need to consider a feeding tube.  However, if anything new hit the market that would help me she would give me a call.  Jokingly, she said if I didn’t call her first!

I called for an appointment 3 weeks ago and was told I needed a new referral.  Apparently mine expires after 6 months.  I never knew that, or I would have been on top of it.  That same day I called my Primary Care Dr to issue the referral.  They did, but now it is sitting with my new insurance company (I am covered under my husband, since I lost my job).  I have no idea how much longer, they don’t want to talk to me.  Only the primary card holder and with my husband’s work and travel schedule that is near impossible!   I guess I may have to get a Power Of Attorney for him, so I can do this myself!

Right now I am on no medication and only taking supplements.  So far, so good.  I also think a big portion of this was that I was able to part ways with my job and leave most of the stress behind! 

Don’t get me wrong, I am in pain every day, high levels of nausea, dizzy, weak, lack of energy, headaches, and so on.  But, in general, I feel better not having the work related stress.  With the sale of our home, the net gain is being used to supplement our expenses.  And I hope I can find a small part time job for a little income.  If not, I am not sure what we are going to do.  We can’t down size any further.  But, I try not to dwell on that, or I can cause myself to go through a flare.

Thanks so much for your interest in My GP Story.  I felt that if you are willing to follow me and read my blogs, that maybe you would like to know a little more about me.  I hope some of my blog topics will help those new to GP find resource they need to get the proper care and hopefully they do not have to suffer as long as I did!

Representative Welch of Vermont Co-Sponsors HR 842. Congressional Call-In Day for Functional Gastrointestinal and Motility Disorders is June 5, 2013

Congressional Call-In Day for Functional Gastrointestinal and Motility Disorders is June 5, 2013. Please help support our Bill HR 842, for Gastroparesis.

IBS IMPACT

UPDATE: 06/13/2015: HR 842 did not pass, but a similar bill, HR 2311, is currently in the House of Representatives for 2015-2016. Please click on the HR 2311 sub-category on the right sidebar of this blog to see the relevant posts.

According to THOMAS, the Library of Congress legislative database, and IFFGD/the Digestive Health Alliance, as of mid-May 2013, Representative Peter Welch (D-VT) has signed on as a co-sponsor to the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2013.

Representative Welch is serving his fourth term as a member of the House of Representatives. He is the single, at-large representative in the House for the entire state of Vermont. According to Representative Welch’s official House website,  he is a member of several health-related caucuses within Congress, and. has a record of supporting many pieces of legislation on health or veterans’ issues.  As previously discussed on this blog on August…

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