16 comments on “Spinning Out Frustration

  1. With tears rolling down my face, finally someone can put into words how I feel. As soon as I was diagnosed, I lost my job. Which meant I lost my insurance too. I had nowhere to go, other than a packet of papers my GI gave me with info printed off of the internet. I felt alone in this struggle trying to figure out what to do next. Part of me is still in denial because I don’t understand how I got this, this is not like a cold that you can catch. I have done so much research in trying to figure out what I should do next. With my symptoms spiraling out of control, I couldn’t get a job or even walk to the car without vomiting. Frustration and anger have lead me down the dark hole of severe depression. Anger for my bills piling up, anger at family for not understanding, anger for no cure, because of my symptoms and yadda yadda the list goes on. But most of all anger at my body and mind for not being able to do the things I once did. Everyday I fight to get out of that hole to find the strength I once had. I may not have the energy to take a spin class, but your words have somehow pedaled a path to my heart that gives me some strength. Just be happy you have the energy to even to get into a car and go to a spin class. All I can say is Go Girl, rock the 80’s headband, I won’t complain I still use scrunchies daily. Don’t lose that strength and fight that you have within you.

    • Bri,
      I’m sorry to hear about your job loss. Are you able to get on independent insurance (I know it will be more costly), or are you still on COBRA benefits? I hope that you have not had any problems if you are getting on new insurance that the GP will be filed as a “preexisting condition?” I don’t know how many people are finding problems with that, or how ultimately the Affordable Care Act will play out in regards to our illnesses…
      I wish you luck and you are not alone! You have found a great place here to talk your frustrations out. Plus, there is also a group through Yahoo! on gastroparesis if you would like to join. I’ve been a member for the past couple of years and it also has helped.
      Keep posting and take the good moments while they come! 🙂
      Hearts and hugs to everyone!

      • I lost my job in 2011, I have not been able to afford insurance as my finances are limited and my husband is also disabled. So I have been doing research on different foods and diets to help me out. While symptoms still persist, I have some good days too, just not many. The change in diet I think is helping, but as you know, what works one day, does not work another. Let me know the info on yahoo. Thanks

      • http://health.groups.yahoo.com/group/gastroparesis/
        I hope it helps!

        Everyone on there is really responsive to questions and supportive! 😉 I recently mentioned the importance of 2nd, 3rd, 4th, and 5th medical opinions and being the advocate of your own health (as you are already doing!), because I was incorrectly diagnosed with gallbladder disease but I knew in my heart that it wasn’t the problem! Luckily I did not have the surgery that was kept getting pushed on me… it was worth it in the end to trust my own instincts!

        Also, I know what you mean about from day-to-day… I’ve had those periods of time… I was also diagnosed in 2011 after 7 years of being ill off and on (and I suspect that I even had the beginning of the symptoms in the early 2000s, but I just thought that I was getting the 24-hour flu each year… oddly enough, I have had the flu only once in a life as a teenager, so I really wondered if I was having the flu (in actuality I do believe it was the GP surfacing)!
        I’m sorry to hear about your husband’s disability and that he is getting compensation (the group was also talking about claims off and on). Good luck and keep in touch!

      • Thanks Jen for the help!

        Bri, I’m so sorry to hear of everything that you are going through. There is something to be said with experimenting with eliminating different types of food groups to see if it helps alleviate symptoms. Gluten-Free has been helping me tremendously but what works for one may not work for another.

        ~Millie

    • Thank you so much for your comments Bri!

      I’m glad that I could help give you some strength! It takes a LONG time to overcome the mental aspects of Gastroparesis. It took me several months of being in a rather dark place to be where I am now.

      I always say that I set at least 1 small goal for the day to say that I accomplished something. It can be something as simple as washing a plate!

      ~Millie

  2. Thanks, Millie! I am also like you, with mild GP and doing really well for quite a while now away from nausea and vomiting (if I can make it to next month, I can celebrate for a 6-month anniversary)! I think about how lucky I am daily. Kudos to what you do for inspiring us! 🙂

  3. Thanks everyone for the support and ideas, I will take all I can get. Jen, I have had the same probs as you since about 2000, however, in 2004 I couldn’t take anymore so I reluctantly agreed to gallbladder surgery even though all tests on my gallbladder came up negative. I was extremely sick after the surgery and for the months to come because of a bile duct injury. Since I had the surgery, I am now worse than before it. I wished I had gotten other opinions, but I worked with these doctors, so I trusted them. For the last 9 yrs, I have gone through 5 GI’s, most dr’s were stumped and had no clue or they just said it was IBS and there was nothing they could do, and my last GI was recommended by an ER nurse who told me I should have the dr’s test for GP. I had never heard of GP before 2011. I think I too had been suffering all these yrs and had just been misdiagnosed. I hope one day that all dr’s will know GP and know how to treat it.

    • Bri,
      Wow, I’m sorry to hear about all your suffering during the same years I was having problems until we both were correctly diagnosed… when you are going through these issues in the beginning and no one can give you an answer (I thought, do I have parasites, or even, stomach cancer?), you just want to scream. That’s amazing and fortunate that it was an ER nurse that knew about the test for GP as compared to all the doctors you saw over so many years! So, you now have bile duct injury from the unnecessary gallbladder surgery? It makes me both sad and so angry that I really think that some doctors are just trying to “cash in” on insurance money from all of these surgeries… I know that there are some that really care but I feel like many of the ones that I dealt with for years (like yours) didn’t have a clue. My chiropractor even knows what GP is, for crying out loud, and chiropractors are so many times getting the shaft in the medical arena because so many think that since they don’t “push pills or surgery” onto people that they are not “real doctors.” I can say that my chiropractor has been the best “M.D.” doctor I’ve had, along with the specialist that finally figured out the GP in one appointment and then I went for the GES to confirm.
      I wish there was more promotion about GP and gallbladder disease symptoms being so similar… are you in the Midwest or eastern part of the U.S.?

      • I’m in south Texas, and I do agree that sometimes I have felt milked for my insurance. What is GES? I probably had the test but I don’t remember.

      • It’s the “Gastric Emptying Scan” text. I’m currently in Virginia, but unfortunately the worse times I had were in Savannah, Georgia… sorry if I offend any people from the city or state out there… but I really had a terrible health care experiences that both angered and frustrated me to no end. I had moved from Ohio because my boyfriend was getting his grad degree and of course, we had left the realm of the Cleveland Clinic (I should have just told myself that I need to go back for their battery of tests)! My boyfriend also started having health problems but of a different nature… it’s a surprise that he even was able to graduate! Unfortunately, however, I was on an independent health insurance plan that I felt was so-so with the high deductibles to meet…
        Anyway, it’s been about 10 years since I’ve been to TX… been all over the state except have never been to Dallas or Corpus Christi. I liked San Antonio, and Galveston was neat to see! 😉

      • ha ha Jen, I think I had a brain fart, I remembered a little while later what the test was and started laughing. I probably don’t remember because my Dr told me the results as I was being sedated for my EGD and biopsy. All I know is that when I went to the office, he told me the diagnosis and I was in total shock that he had said something other than IBS. I had no clue what questions to ask him. He just gave me a rx and a packet of papers he copied off the internet on what GP was. And then I lost my insurance and could not afford to go back for a follow up. Never been to the East Coast and TX is too hot for me.

      • I know what you mean… the humidity kills me here now. I’m going to Washington state again soon… thinking about moving there one day actually. At least it’s not 80s there in April! 😉

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