Low Vision Aids Put Off til After Cataract Surgery

[mtbargeman]

Hi, Yall.

I have my first cataract surgery scheduled for July 23, the second for August 13. The eye guy says it may bring me from 20/400 currently to 20/200 after wards. Everyone is in agreement that they have no idea what is wrong, I don't need the Neuro-optho. any longer, since everything looks normal. My Intermediate Uveitis is gone, my Iritis is gone, my optic nerve is only somewhat pale, cataracts not very large. The general consensus is that I am putting off the inevitable, we are only trying to maximize as much vision as possible, and prolong it for as long as possible. I am going blind for "no reason".

It's not funny at all. Yet. I can't even seem to feel the need to cry about it. All I get is frustrated because I never get to leave the yard without someone else, my husband has been fishing twice this week alone, plus darts every Sunday, while I see my family once a week or every other week. I understand he needs a break. He keeps "trying to include me"- why would anyone go sit in a bar for an all-day game of something they can't see, surrounded by folks they don't know, can't identify, and wait til someone else was through before they could leave??? I'm too much of a liability to hunt anymore- if you can't see to identify your target, you NEVER SHOOT. Fishing is the same thing- it's hunting on water. Nice. I can't see the edge of the boat, can't see the hooks, and he thinks I'm going to CAST, when I CAN"T LOCATE ANY OF THE OTHER FOLLKS ON THE BOAT????? What the%^&^??!! Sometimes I want to choke him til his ears bleed. He honestly believes he's helping by offering to take me with. I guess he doesn't consider the fact that I don't have anybody to watch the kids, and can't go, anyway.

OK. I'm done whining now. Thanks for listening,

MAry

[Mike Bartolatz]

Mary,
I hope your cataract surgery goes well without causing the intermediate uveitis to flare up and that your second surgery can proceed as scheduled. there should only be some discomfort for a day or so. I used ice packs when I got home to get some relief. I also wore my sunglasses to bed so that I wouldn't rub my eyes. the improved vision was well worth the surgery but my uveitis flared and was difficult to get under control from the trauma of surgery. I did require yag laser surgery afterwards to blast a hole in the lense capsules as they opacified from the protein given off from the inflammation which was not a big deal done in the office without any pain etc. it is beyond me why they can't figure out what is causing all of this to happen. ask that they take samples of the fluid for DNA analysis to look for a pathogen or other possible cause.

I used to take my Dad fishing when he went blind and he did pretty well. we had to help him reel in and land the Salmon as it was a bit too much for him. he always held his fishing pole so that he could feel the fish strike the lure and got a real kick out of it.
I understand AJ's wanting to include you in everything however. I also understand your frustration with not being able to fully enjoy going with him as well. lets hope that once you have your surgeries that you will be able to do allot more. the 20/200 vision anticipated as your final visual acuity will enable you to fish and do allot of things. I remember when my vision was that poor and I could do allot of things including fishing. I couldn't tie the fishing line but I could catch the fish and net them. I couldn't drive the boat though as I couldn't see garbage floating in the water.

Darn, I forgot to type in caps for you.

Wishing you the very best,
Mike

[mtbargeman]

Thanx for the info. It's ok if you forget to type in caps- most of the time, I only use it when some function or other won't play fair. I blow everything up on my screen til the letters are about an inch. That's alot of scrolling to read everything, but it works for now. I did request they do the samples during surgery and the doc thought it was a good idea. It's the only reason I am bothering with the IOL's at all.

MAry

[Mike Bartolatz]

good that you spoke to the doctors about DNA testing of fluid and they agree.
getting your vision to 20/200 will help allot and you can do allot more too.
I hope they can figure out what is causing the optic nerve to be damaged too and stop this progression.
somehow I keep thinking the infection that caused your hearing loss may be related to your intermediate uveitis and optic neuritis and that the DNA testing may provide a clue and then treatment can stop this stuff from getting worse for you.

any news on the Bone Anchored Hearing Aids? any way to get pro bono work and free Aids on a compassionate level from the manufacturer?

I wish I could hit the Mega Millions Lottery so I could pay for them for you Mar.

wish you and your family a wonderful 4th of July too.

Take care,
Mike

[mtbargeman]

Well. It's been an interesting weekend. I got left inside during a pretty decent party I'm told, because I couldn't find my way out to the fire that AJ was keeping an eye on. It really felt like I was being left in a corner with everybody' 7 mos. to four yr. old kids, plus my five year old, so everybody else could go party. I guess it never occured to them that I could have fed the baby the wrong thing or changed her diaper with Clorox wipes. Nor did it occur to any body to come check on me until AFTER the kids were asleep. My 9- yr old came in to pee and I sent him to bed, only then did I learn it was ONE STINKING A>M>

!! Plus, mtx gave me intestinal issues this week, and this morning I tried to take my Levsin to help that, and then realized I had chewed up 3 Blood Pressure pills. So I go to go to a NEW ER.I was sent home with instructions to drink lots of water. I did eventually get the Levsin and the rest of my meds. This is where I learned that Nasonex will make you unable to smell for a full minute after you take it. Levsin smells like spearmint. HCTZ smells like HCTZ.We no sooner than came home today from my stepdaughter's than I had to make lunch, then my husband went to go have fun shooting darts.

I'm sorry,I don't mean to whine, but my feelings are rather hurt. I feel like I am being shoved aside while everybody else gets to go play. Even my mother in law does it. If she doesn't feel AJ's Stepdad can be left alone that day, she leaves him hhome. With me. While I appreciate the level of trust that implies, sometimes I feel I'm being used. All weekend I saw other folks long enough to clean up after them or run them out of places they shouldn't be. And most of those were under 10. I saw AJ long enough to go to bed- put on pajamas, bedtime routine, go to sleep. All stinking weekend. Am I wrong to wish for someone to lead me out to the fire with everyone else? The major cleaning job I did was just part of being a good guest. You helped dirty the dishes, you help wash them, right?But when the party was going on, I would have like to at least talk to someone over 10. I know there weren't any games I could play, because I can't see. I don't know. I guess I don't know what I want anymore. What I DO know is, I'm not going to any more parties, and I am going to ask my caseworker at DBVI for a large pill box that I can read, and get AJ to help me set it up ea. week from now on, Well, that's about all the "Poor Me" I can stand. How 'bout yall?

Love Everybody,
Mary

[Mike Bartolatz]

Mary,
you can have a bit of a pitty party once and awhile and do it here to get it out of your system. It helps to lower stress allot as well. People who are in a pary mood just think of themselves and you were a Baby sitter for them. get a few drinks in them and they forget they even have kids allot of time. tell AJ you want to be included if that will help matters. ask him to assist you to a seat beside him and to include you in discussion on such occasions. the other parents need to hire a babysitter if they can't take care of their own kids too.
Rude behavior to those with disabilities is rampant, Rude behavior by people who drink too much is also off the scale too.

Take care,
Mike

[mtbargeman]

Thanks for letting me know that I wasn't the one off the mark that night. When I was younger, I never had much of a chance to go to parties and such other social events. I was kept at home, and then when I became an adult, i didn't do much other than work. I went on a few dates here and there, but I wasn't much for bars or organised religion, and I STILL can't dance- I have two left feet

Anyway, now that I am raising my own kids, I am having to deal with them wanting to be social, which is normal ( I am only now finding this out)and trying to figure out when and when not to allow them to do certain things. Sleepovers, visits to freinds' houses, group activities like Scouting and sports. I was never allowed to do these things. We never could afford them, anyhow, most of the time.

Now I find myself being invited to family get togethers where there are people I don't know, and it can be very awkward for me. It isn't that I am afraid, it's just that outside of having a job and being able to relate in that way, I am totally clueless as to how to meet people and make freinds, and then I get hit with human nature- Everybody wants to ignore the elephant in the room, so to speak.So In a way, I sort of bring it on myself. But it still sucks to be 32 years old and still be that kid who always got picked last on the school playground. Or the girl with the crazy father that no one wanted to date on fear and pain of death.

I thought all that BS went out the window once we got out of high school and into the real world, especially with kids of our own. Wow. Some people never ever change.

[Mike Bartolatz]

Mary,
The 'two left feet' thing is related to your inner ear disease which left you deaf so dancing would be very difficult to try to accomplish for you. It saddens me that your childhood was marred with an over bearing father not allowing you to even try to grow up like a normal child. But, ya can't dwell on the 'what if's' of life: ya gotta move on.

I know that speach is difficult for you so maybe you could compose a letter on this topic and present it to AJ and your inlaws so that they will be able to read it without emotion of confrontation. Most people can then read and re read such a letter and then take person action to include the other person in activities, AJ was probably just trying to let off some steam and probably didn't realize that he was ignoring you.

wish you the best,
Mike

[mtbargeman]

I did sit down and speak with AJ about this topic, and told him how I felt about going to any more parties, at least until after I get white-cane training. He hadn't realised that staying in was not my choice, and then I saw the light bulb come on when i expained and told him I wanted my own sense of independence, at least a little- I didn't want to feel my way out there and yell for him like a lost little girl looking for her Daddy. BINGO. He got it. I haven't had a problem since.

Anyhow, the Orientation and Mobility guy from Norfolk FINALLY decided to check his voice mail and called me back. I will meet him on the 11th- that's this Friday, at 0800.HE will come to the house, and I guess I will post more abour O&M training as soon as I know more. I certainly will post in a new topic, to make it easier to find.

My dad was just diagnosed with COPD, related to Black Lung. They are running more tests, and Daddy promised he'd listen to the Doc, and Mom promised to drop my nephew off with my brother and sister in law, so she could go with him, to make sure of exactly what he's supposed to be listening to. He rarely remembers, mostly because he doesn't understand. It's going to be slow and agonizing for him, and it's killing me right now. I can't come busting in and take over and help Dad the way I did Mom when she got sick two years ago. So much time has been wasted because I wanted to live my own life my own way, and things were said that never should have been on both sides. The first three years my husband and I were together were like that. Now Time seems like such a small and precious thing. Nothing to do but to help where you can, when you can, and move forward. He let me feel his face last Saturday, because I can't remember what folks look like anymore. He hates people touching his face. Well. Death and taxes, right?

Love everybody.
Mary

[Mike Bartolatz]

Mary,
I'm glad that AJ has found common ground with you on your need to be 'included'. hopefully he will help you to explain to others your need to be included in things and to hlelp others get over their aversion to those with special needs. what often occurs is that people don't know how to address needs of those with disabilities. they usually want to help others but have never been put into a situation where they were taught to help out, kinda like trying to swim for the first time. once they get their 'feet wet' it the water isn't so scary.

glad the Mobility training is on track now and hopefully that will take some pressure off of you and your family. all family members will need to have the guy talk to them so they will understand how to help you with meals and other issues too. the plate as a 'clock' to describe where food is on it will be one such thing and to not move furniture or leave items where you can trip on them is important for they to be re inforced by the specialist too. when someone other than ourselves says things family members or co workers understand better.

I know you will do well and learn quickly as you are very bright. know that all of us are rooting for you.

God Bless,
Mike

[mtbargeman]

I don't know if everyone with COPD does this, but my Dad takes the cold chills sometimes. HEck, I don't even have COPD and I get them. One minute you're fine, thenext, you're so cold and shivering and it HURTS. I wanted to make him a quilt- he likes things like that. I can't see anymore to make the tiny pieces for the old patterns- Around the World, Log Cabin, Hearth Blessing, etc. So I made up my own design, using bandannas and handercheifs. The way it is put together , I named the design, WV Coal Miner's Daughter" . So I will iron out all my pieces and sew part of them together today, and do the same, a step or two at a time, till I go see him again on Saturday. It isn't much help, but I'll at least know he can always get warm. I will be sewing this on a machine.

I used to sew by hand, and turn a fair-decent seam, but I can't see to even FIND the needle now. Bandannas have those big white lines around their borders, which makes it much easier to figure out how to put the pieces together. Let's see if my 20/400 seeing self can work this one out. Ya never know...

Mary

[Mike Bartolatz]

Mary,
I was 20/200 in both eyes when I remodeled my kitchen, I made all the cabinets and installed them, re plumbed for diswasher, hot water dispenser and did ceramic tile floor and counters. today I can see some small mistakes I made but no one else can tell. mostly in the staining and finishing or the doors and drawers.
my point is that as long as you can see well enough to not HURT yourself or someone else, I say more power to anyone willing to try a project. these thinks like making a quilt means allot to you and I pray your dad will appreciate the difficulty accomplishing this.

Wish you the very best my friend,
Mike

[mtbargeman]

Thanks for sharing that with me. It is quite encouraging.

Mary