Figuring this out

I posted a blog, now realize it should have probably been a 'discussion. I do have a couple other questions, though. Besides losing my gag reflex years ago, I have not been able to yawn or sneeze for quite a while now. Is that common? I also went totally deaf 3 times for 8-10 seconds in the last year. Have no clue if that is related.

AS I said in my blog, my pancreatitis, punctured duodenum that won't quite heal, and the continuing weight loss (over 90 lbs in 3 years) for unknown reasons are a great concern. I am down to about 75 lbs. and eat constantly (although am limited as to what I can tolerate). Combined with the Chiari, associated cervical syrix, and the large syrinx in my thoracic spine, I'm a disaster. Are there others who only get to see a resident (a new one every 2 years)? I am on SSI and Medical Assistance, and none of the referrals to specialists have worked out well. I only get 15 min. and one primary complaint for my visit, and it just isn't enough with all the things going on. The weight loss alone will kill me, it's as if my body thinks it is anorexic, doesn't realize that I eat constantly. I used Ensure Plus 3 time a day for months, but still lost weight. My chart is a disaster with 2007 mixed in with 2012, papers flying out, and there is no way that the "boss doctors" are reviewing my chart. It is incomprehensible. My ins. only covers one primary hospital and specific non-board certified Drs. that I can be referred to. I'm at a total loss. The pain med (vicodin 5mg tid) doesn't help, the Soma helps more (but only tid), neurontin helps the fibro stuff, Concerta takes care of the Adult ADHD,and the clinic I am covered by fights me every inch of the way just to get these meds. I don't know who to go to to get more assistance from the 'boss doctors'. The residents are overworked, still in school, and don't have much of a clue about any of what is going on with any of this mess my body is going through. Between my belly, neck, head and shoulder, I am becoming less and less functional. I qualify for a service dog for balance, PTSD, etc., but am not ready for a dog that is attached to me 24/7, so am searching for a Malinois to train for assistance (canes and I don't work out, my hands don't feel things properly), and am hoping HUD (public housing) will approve.

Sorry, am babbling and complaining. I'll try to avoid doing this in the future! I thank everyone who welcomed me back in July when I found this site, and hope to be able to figure it all out soon! Thanks for listening....


Hi Florence,

Is it possible to talk to your PCP? I am so sorry you are going through so much & feel so bad.

Please know we are always here for you,


lease know

Welcome, I'm glad you found this place! I'm new here too and it has been such a wonderful experience, people really understand and support each other through triumphs and struggles.

I am so sorry to hear about all your health issues. I'm still trying to find the right doctors as well.

Keep us informed about your journey!
Katrina W.