Sarah Tee Posted April 24 Report Share Posted April 24 It’s now nine months since I found out that I probably have OCHOS, and I’m still waiting for my Doppler ultrasound test date. I have had to put my immune treatments on hold so they won’t interfere with the test. My LDN prescription is sitting at the pharmacy when it could be helping me. The delay in the scheduling is because my specialist has to be present at the test, even though he knows less about it than I do and doesn’t even normally do NASA lean tests himself. I am really tempted to tell him to stick it and ask for my money back (I know that’s not possible, but he’s wasted so many $300 appointments with his procrastinating). Argh! Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted Wednesday at 03:11 PM Report Share Posted Wednesday at 03:11 PM So sorry Sarah! I understand as I lost years to delays in testing, scanning and waiting on appointments! It seems like I’m constantly waiting, for the next appointment, the next doc, the next big thing, before anything can be done. And then it’s a 3 month wait for the test, followed by a 3 month wait for the doctor, then 3 months waiting on treatments, BUT by then my condition had changed!!! I’m fed up and I refuse to play the waiting game anymore. Fifteen years of my life lost already, I’m not accepting anymore unreasonable delays. Health care Access and quality are threatening all of us! Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted Thursday at 03:58 AM Author Report Share Posted Thursday at 03:58 AM @MaineDoug, good for you! I have a plan to change to a different specialist. I am going to see him in conjunction with the current one, and, if he is good, I can ditch the current one. If not, I’ll keep looking. How is your recovery going? Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted Thursday at 04:34 PM Report Share Posted Thursday at 04:34 PM @Sarah Tee, My recovery is exceeding expectations! All restrictions have been lifted, I’m walking 2 miles a day and can do light activity around the house! For the first time in more than a decade I can move around without pain! My hepatitis and pancreatitis are under control. And I’ve learned to keep my Dysautonomia/POTS under control with 4 hours a day of exercise, diet, hydration, sodium, meditation and visualization. It’s a lot of work but worth it! I still have health challenges but the overall improvement is amazing. I can live, dream and hope again! Wishing everyone the same! Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted Thursday at 05:09 PM Author Report Share Posted Thursday at 05:09 PM @MaineDoug, that’s wonderful news. Enjoy your walks! I am sure Maine in Spring is lovely. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted 15 hours ago Report Share Posted 15 hours ago @Sarah Tee, Wonderful in spring? In Maine? Have you been here? LOL! I read your note to my wife and she roared with laughter! Maine is a great place and my heart’s true home. It’s great in so many ways and times. The people are kind and helpful. The nature is glorious. Summer is grand! Cool but grand. Fall is delightful, crisp and clear. And Winter is a snowy wonderland. But Spring? Bugs and mud! Too warm to wear a hat but too cold not to. Too wet to go outside. The joke here is that we have 8 months of Winter and 4 months of poor sledding. Thanks for the cheer on a lazy Sunday morning! On a serious and wonderful note, my wife and I were married in October of 2019. I became seriously ill and disabled by December of 2019 and bedridden with limited function since then. Imagine my wife’s surprise when I started seriously cooking. In her own words “like restaurant food”?!? (Why is it that nobody believes that I can cook until they taste it?) She says that it’s like a dream. Suddenly healthy delicious food everywhere! 😁 It’s the little things in life that matter, like shopping for groceries, cooking and cleaning up afterwards! I laid on the couch and dreamed of this for years! 🌈 Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted 59 minutes ago Author Report Share Posted 59 minutes ago @MaineDoug, well, I will make a note not to visit Maine in spring 🙂 I hope the bugs and mud pass quickly into a nice summer! It’s lovely to hear that you can cook for your wife now. I agree, the little things in life are wonderful when you get back to them after illness. I have a door I need to finish painting and am looking forward to it so much! Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.