Pity Party for me

Can you tell me if you have been given a reason why you have developed the macular degeneration.  Sorry you have the diagnoses and the pancreas thing.  I hear a lot about the degeneration and wondering where it comes from.  I am 62.     

I wish I knew why I'm developing macualar degeneration.  Mostly is a heridity thing but no one in my family has it or had it, at least not diagnosed.  No reason was given.  Just unlucky, I guess. I'm seeing a different opthamolgist in a couple weeks.  The one at Mayo didn't give me any information and told me no need to be checked for a year.  My optomatrist flipped out at that one and set me up to see someone here.  He didn't like what they told me at Mayo, or rather, what they didn't tell me.  Like vitamins.  He starts everyone with any risk factor on them.

Oh Lyn, I'm so sorry you're going through a difficult spot.  Your eyesight is a tough one.  My grandpa who the only thing he lived for in life was to drive around now can't do it.  It's been a tough pill to swallow but he knows he has us and he has his memories. I'll think good happy thoughts for you.

Hi Lyn,

My doctor's are on the conservative side re: removing the pancreas. My endocronologist - who is working with the Mayo team - is uncovering some evidence that this phenomenoma may be temporary (i.e. less than five years). He was recalling some patients he had seen years back who had the same issues but then, after a couple of years - and NO surgery - it went away. That's one of the reason that he and the team of specialists I am seeing, would rather me NOT have my pancreas out - unless everything else has failed.

Have they tried you on Octreotide? I've never heard of Precose before.

FYI - I've gained weight back - about 40lbs. It's frustrating....

If you want to chat - email me at [email protected] - maybe we can talk by phone?

Regards, Kristina

I'd also much rather not have surgery.  However, I feel lousy on the Precose increased dosage.  At the lower dose, I drop like a pebble.  Without it at all, I drop like a rock.  The serious drops like down to the low 40s scare the pants off of me.  I'm afraid I'll be driving and won't notice I'm getting low.  Plus, I am unable to manage this thru diet.  My diet is so limited now, about the only thing I can do is to just not eat.  And I am never sure what food will do it.  Some things I know consistantly will do it.  Others catch me by surprise.  I have time to decide.  I can't do anything until at least the end of May so we'll see how it goes.  I want to be able to eat like a normal person.  My diet right now is pretty much eggs, cottage cheese, protein bars and shakes.  Milk makes me drop.  Chili makes me drop.  Oatmeal makes me drop.  I've dropped on an apple and yogurt.   Mayo pretty much thinks that drugs will have no long term effectivness. 

http://www.medscape.com/viewarticle/535197?rss If you  are working with Mayo you have gone to a good place.  I hope they find some solutions and treatments for your problems that will make you feel better and healthier.  HUGS!

Hi Lyn, You've had some serious news for sure, and I know the uncertainty of macular degeneration is frightening and grievous. My mother (74) has macular DYSTROPHY.   Same as degeneration but GENETIC, so she's had it since birth but MANIFESTED 11 years ago. My brother and I both being closely watched for first signs... In the meantime - although my mother stopped driving 10 years ago (she drove up a pile of gravel in the road - it was gray - the color of the road - no contrast)  she continues to be the BOOKKEEPER for their rental prop. business!!! She has a monitor that she uses to read (takes a picture, letter, bill or book and places it on a sliding drawer and it magnifies & shows up on a T.V.- type screen- either changes the images to white w/ black background or vise-versa).  I must say she so efficient at READING -now her MEMORY is the issue!  There are so many low-vision tools on the market now, it's amazing. She grieved for a couple of years when her central vision started getting darker - but what happened is she became more attentive - sensitive --- her other senses picked up the slack and she began embracing the joy of what she WAS able to see. She lives in a 2 story w/ laundry in basement -old farmhouse.  (narrow, steep stairs)  Her drawers & cabinets - her entire house is memorized She was always a GREAT "look you in the eye" kind of person.  Now in order to "see" you she must turn her head away from us - look at us from the "side" (her periphery) . I've watched her become stronger and calmer.  She's amazing and is my hero. I will be thinking of you during this new phase of your life - as you process this new chapter and learn how CAPABLE you really are (even at it's worst) In my prayers, Judy