Miss me? a long Dejibo went missing story
 

Well, its been a long time since I was here. Its been an eventful season. I had several flares back to back and landed myself in the big girl hospital. I was on IVSM and other cocktails for more than a week. UGH! As most of you know I save IVSM for Optic stuff only, and have failed or quit on most DMDs.

I cant see any more. I went blind with the last attack. its like someone smeared thick vaseline on my glasses and then turned down the lights. I can see shapes and shadows, but not much more. My vision is now at somewhere between 20/400 and 20/500 depending on who's test you believe.

I wanted to show up and say thank you for the many emails and private messages asking if I am ok. Some of you have seen the drama unfold on facebook. I finally found a screen reader that will read the computer screen for me and didnt cost me $900 like the JAWS program. I have a set up now that I speak to the computer (like dragon naturally speaking) and it writes on message boards or FaceBook for me.

The meds they gave me had a 50% chance of working in the first ten days, then past that each week saw a 10% drop off in chance of helping me. At 30 days they consider that the stuff is completely ineffective if you dont see a change. Today is day 30.

You wont see me show up many places very often anymore as its hard to navigate in the blind, and I am still learning my new software. The NH association for the blind has swarmed upon my house, and are being really wonderful at teaching me how to live my new life. They are going to send me away to Newton, Massachuesets and teach me how to be independant without sight. Once I prove that I can navigate the city on my own, they are going to send me to dog school and will give me a guide dog. They are allowing me to pick which school I want to go to as each school has different types and styles of dog. I think I will go to New Jersey and pick a lab doggie. Connecticut is closer, but they only have shepards, and they are big doggies. New York has some mixed breeds and I am in love with that idea, but the thought of navigating New York City for my first several outings with a dog scares me to peices! That is at least six months to a year away while I learn to get myself around.

I am learning many things, and figuring out things the hard way, but I am learning. The DH is finally learning to let go, and let me try. He was so freaked out that he wanted me to sit in a chair and just try to listen to TV. He waited out our 30 days like a jail sentence. About a week ago, I declared ENOUGH! im getting up! I had slept for about 3 weeks, and now I have found that I am tired of this. So, watch out world, I am going to stand up and trip all over you. :cool:

Hugs and well wishes to all. TY so much for chasing me down outside of this circle and letting me know I was missed. You guys are the best! I will update you every now and again, if I can.

I missed you Dej. Thanks for the update and i hope you post more as life moves forward.

We missed you Dej. I'm so sorry MS has taken yet another thing away from you. I hope the school proves to be helpful and you'll have to keep us informed on the new doggie. I hope Jack and Lily accept him/her. BTW....how is Jack doing?

Looking forward to more updates from you. :hug::hug:

I am so happy to hear from you.:hug:

So so sorry as to your sight loss.:( Dammit!!! I hope God sheds His grace, mercy and a lot of light, as you hopefully heal some, in the future.

Come home to us as often as you are able and let us know what's up!! A new Doggy helper/friend. You deserve it and good wishes with that.:)

Miss you too.:hug::hug:

It is so good to hear from you but so sorry that MS has taken this course. You will come out on the good side of this.

I am very sorry to hear about your current difficulties. Take care and try to keep us updated...if possible.

did miss you dej
 

I too, though I didn't know you well, I did notice your absence. I am sorry this MS has done this to your vision. I hope your new dog, brings a wonderful joy into your life. You will be in my prayers too. ginnie

Praying for you Dejibo :hug:

Dejibo.

You keep surprising me. I've been reading here for over a year and have looked forward to your threads.

I wish you well on this new journey. And courage to go with you. I think you will be all right.

Keep writing- you're very good at it!

Thank you,
ANN

So sorry to hear that you've lost your sight. I hope you get your new doggy eyes soon and he/she will settle into your family like they'd always been there. :hug:

Maybe I did something wrong, or maybe its my account that is messed up. When I come here, I am never signed in, and I dont see my post. Then when I sign on I see my post and that it has a couple of replies, but I cant see them. I only see MY original post, and no replies. If I go to "today's posts" I can see that others have commented, but when I click the link, the same thing happens. So, for those of you that responded, I have not been able to read them.

Another odd thing is that when I go to the MS page, not the Stumble Inn I see that I have been signed out. When I try to sign in, it accepts my sign in, then the page redirects me to ...a NON signed in version of the page as if I am a guest.

Is my account ok? Is the ms section of the message board having trouble? Why cant I see the replies to my post? Am I missing something? did you guys change the layout, or the rules? Can someone look into my account and figure out why this is happening?

Thank you
Dejibo

First off I'd clear your cache. That may help.

I've alerted the admin team so you may get an answer soon.

I am so sorry to read of your vision changes.

Someone will try to figure this out for you. For now, try clearing your cache and history and that may help. You may be seeing old pages, for example.

Hi
all is in order with your account here

It sounds like a cache/cookie issue with your browser. If you clear cache and cookies and then log back in, all should display correctly. Be sure to check the "remember me" when you log back in

also be sure you have the linear mode display set in your options

:hug: Dejibo, I hate that MS is robbing you of your vision, but so glad to see you are kicking it in the shins and not letting it hold you back.

Thanks for letting us know how you are doing. :hug:

I'm sorry MS is being so rotten to you!

I hope the school and then the new doggie treat you well.

Hope to hear from you soon.

Hi Dej! I've been wondering about you as I knew you weren't doing well. But, I knew you would pop in once you felt better. I hope all goes well with the new software as well as the guide dog and your training. I will keep you in my prayers.:hug::hug:

For the Vision Thing, there is always hope, at least a little. A couple of Years ago there was a Girl at a Drug Presentation who had gone Blind for almost 2 years then got her vision back, not 20/20, but ok.

So sorry to hear about the vision thing, that stinks! I wasn't surprised to hear that you are getting up and taking this by the tail, after reading your posts in the past I know you don't give up or quit!! I have recently gotten a service dog and she is a true joy in my life so I wish you all the best as you begin this journey. I really believe that all we can do in this MS life is just keep getting up every day and choosing to live the life we've been given. :hug:

After clearing my Cache and deleting cookies, history and reseting my browser back to original settings, I signed on to see someone gave me the same advice. lol. :hug::cool:

TY for asking about Jack the cat. He has been struggling lately. He is really sensitive to change, and DH went hunting for a month, then when he came back I went into the hospital 2 hours away, which meant DH was away all day, and DS moved out in the middle of all this. Then I came home and there was OT, PT, Social workers, the blind society, the institute for independant living, and a bunch of others. It FREAKED him out! So, he went into a tail spin and ended up back in the vets office. He is currently back on pain injections, and today he got his first elavil pill. We are trying the anti anxiety stuff with him, even tho its very traumatic to pill him. He got tuna after, and I need to go find the missing part of my finger. OUCH! There are days that I truly wonder how much more this poor cat can take. For now, we struggle onward together.

Saw vestibular rehab today and the guy was very sympathetic, but said there was very little he could do, and we were going to try to do this a milimeter at a time. My issue is that my eyes are fighting to be dominate in finding balance, and its over riding my inner ear, which is lying to my brain. So eyes open, all is fuzzy and dark, but they demand to lead. Eyes closed I am tipsy, drunk, off balance and simply cannot sit up in a chair without falling out of it. UGH! going to have to do this the hard way.

Fighting with my new insurance for prescription plans, which is denying ALL of my meds! my MD is having to submit letter after letter to get each med approved. They sent me this telephone sized book to read. I explained that I am blind, and cannot look up what they want me to look up, and got no alternatives. After ten years on a pain med that works wonders for me, they are denying it, wont pay for it. so that fight goes on.

Thanks for the love. :hug:

Awwwww, Jack is not used to not being the center of attention. Too bad he couldn't be trained to be your seeing eye cat. How cute would that be.:D

I just went through a hospital stay myself, so I know what you mean about the home Nurses, OT, PT in and out of your house:eek:

Keep feeling better each day.

Re: advocate group
 

Dear Dej. Hope the problem with the PC works with what our administrater says to do.
I am sorry you are having problems with the drug companies. The advocacy group for the blind, may be helpful in trying to get the drug companies to cooperate with what your doctors want you to take. Keep fighting to get the medications you need. I am sorry your MS is causing you to have this problem. You are in my thoughts. ginnie

Hugs and well wishes to YOU Dejibo. I know this is a detour and not of your choosing, but my money's on you anyway. You're a very resilient woman.

Becca

hey Dej. How is that DS of yours. Our boys are close in age so I have an emotional tie insofar as hoping your DS is thriving. Was he able to escape the bad girlfriend?

OMG DS moved out!!! He found a really sweet woman who is a widow and has 3 kids. She is sooo sweet, but way over her head with those kids. My son moved in, and they are tag teaming the kids to try to bring them back to center. He is laughing, smiling, and just beams when he talks about her. I never saw that look on his face when he talked about StickyHead. He made enough money to trade in that truck he had, for one that has enough seatbelts for all the kids to ride at the same time. He got insurance, and he paid off the lawyer for the bankruptcy. He is also going to the dental school to get his teeth fixed, and is working hard to complete all the projects round the house that the sick husband got started and left hanging when he got so sick. He is really spreading his wings.

I really like this one! she has some growing up to do, but I think she will be just fine. TY for asking.

Dej, you are such an AWESOME woman! You and Jack can get through this rough patch. I do hope your eyes quit trying to dominate independently and just learn to work together. :eek: :)

You are such an inspiration with your upbeat attitude. Thanks for posting. Hang in there girl! :hug: