You know what drives me crazy?!

You know what drives m crazy is not being able to read the fine print on food products, prescriptions, directions, ordering on line, you name it. It is hard!!!

I actually wonder who can read the fine print on a lot of products?!

I still struggle putting my lens on...

I still struggle putting my lens on! Today I left the house and I thought it was on and it wasn't . Freaky.

When I got home I found it attached to the mirror. It is hard to do with only one eye, but no excuses. Practice makes perfect. I had to rely on what I call my "earth Vader" (how timely) breathing to keep myself calm. It helps me to not awfulize...

I have now adjusted to my needy lens contact with a script so I can see out...

I have now adjusted to my new day lens contact for my right eye and noir is back to the left eye issue.

The left eye has a special contact that covers my retina so I don't hav double vision. Unfortunately, it is not working. I feel dizzy and lose my balance and feel terrible.

It is back t the eye doc again.

Freaking out this week because my good eye seems filmy!!!!

Freaking out since my good eye seems like it has a film over it.

Am I going blind?!

Don't feel good, can't see well out of the good eye, not driving at all, feel in' freaky!!!

Went to the eye doc who explains I now need a script for my good eye, amaIngly better.

I tried one day contacts which I can try immediately and hope springs eternal.

Then the LUCY enters my body and I can't get it out!!!'

Finally, my husband helped me get it out ! Phew!

The next day we are off to a Wedding and I am trying to put the contact on in the airport!

Another Lucy Show and I give up...

When we arrive in Cincinnati we stop at a pharmacy and I beg the pharmacist to get the contact in my eye. I did not want to go the whole weekend just seeing fuzzy since my other eye is out of commission altogether .... The pharmacist has success and the world is back again! The story continues!

I can see clearly now...

I can see clearly now.. The day before my surgery, on my last visit before surgery, I was feeling weak in the knee as they say.

My daughter handed me her phone and all of sudden I as lost in the song, "I Can See Clearly Now".

A life saver.

It brought me back to hope, to feeling this time would pass, that there would be bright, sunny days.

Thank you, Dughter.

I will never forget that moment.

How about PS, Proud Survivor?!

How about P.S., Proud Survivor?!

Or

HIP Health Issues Pride

Or?!

The other names do not do us proud, not uplifting, any other ideas?!

Crippled, invalid, handicapped, disabilities?!

Crippled, invalid, handicapped, disabilities , etc. who thought of these words, a masacist?!

How about HIP?! Health Issues Proud!!!!!!!

Press Release

Deerfield Woman Attended Conference on Brain Bleeds in Chicago

The Angioma Alliance Conference 2015 was my beyond my expectation. I had put off going to the conference out of fear of hearing again what happened to me, afraid that it would trigger old fears. I still didn’t know if I had passed the gene to my children, and I was still learning to cope with my limitation. Plus, I didn’t know what to expect from the other war stories that I was yet to hear.

Reflecting back, I don’t know how I had survived this condition since I was a child? But I can’t help thinking losing powers that I can’t work, that my life and my whole family’s life have changed. But, I decided to focus on one foot in front of the other, and learn so much from the following speakers:

·       Dr. Issam Awad – Cavernous Angioma:  He covered a range of cavernous angioma topics: basic disease information, genetics, and clinical decision-making on topics such as surgery, pregnancy, and spinal cavernous angioma. For the final 30 minutes, he discussed the latest research on drugs treatments and news in clinical drug trials.  Dr. Awad is the chair of the Angioma Alliance Scientific Advisory Board and the World’s leading expert on the illness.

He has helped me to reach the turning in my life, which is to accept my new way of living to do positive things and to focused on helping others as I continue to help myself. Don’t hesitate to look up the Angioma Alliance’s website. Take a look at my blog called, Gotbrainbleeds? or Twitter called Vertigogirl1510.  I hope to have my book by December-bigger reason? People don’t know the symptoms, how to cope, where to go help, I just to know the there others out there who know what you’re going through.  I used to call myself an “other”, but not anymore. Now I know I’m a fighter and I’m strong, and sometimes when you’re at the end of your rope. You just have to tie a knot and hold on.

The world’s leading expert on this illness, Dr. Issam Awad, discussed the disease, genetics, spinal cavernous angiomas as well as the latest information on drug treatments and clinical trials. Dr. Eliot Roth, Chair of Northwestern Feinberg School of Medicine’s Physcal Medicine and Rehabilitation, was also on hand to present advancements in post-stroke rehabilitation.

To find out more about cavernous angiomas or the Angioma Alliance Family Conference please visit www.angiomaalliance.org or email Dr. Connie Lee at coordinatior@angioma.org

For further media information, or to arrange an interview with Nicki Milin, please contact Leslie Kaufman at 847-989-1207 or leslie.kaufman@comcast.net

Second Holiday Dreams

The Second Dream during the Holidays is that both my parents died when my sisters and I were.  No longer getting along. I took a picture or found a picture of we three girls in happier days and my Mother reached her hand out of the grave so I could give it to her so she could be at peace. I suppose for myself too. Sometimes when I go to the grocery store I get an immense headache could with fear of how am I going to get through this episode . My body goes into "warning", "warning"! I am stubborn and I go.

First Holiday Dreams

My Beloved Father died two years ago and the Holidays bring back memories for me. This dream is about being back in the house that we had owned for my whole life time and my Dad is reading the paper in his favorite chair after breakfast ànd  my Mom is there too. I am trying to explain to them that I had to sell the house and that we better leave before the new owners got home and found us there.

Angioma Alliance Family Conference - Dr. Awad

Went to the Cavernous Angioma Alliance Convention....

Went to the Cavernous Qngioma Alliance convention and learned a lot! Will organize my thoughts and get back to you.

Families forget,that you suffer everyday !

Families forget that you suffer everyday because they are sick of it! Well, so are we.it just never goes away. We adapt.

If I read too much...

If I read too much in a day I am bound too get my little earthquakes/spins caused by too much vestibular stimulation. Bummer!

My contact not working la5ely....

I started wearing a contact on my bad eye which was working for awhile which gave me more vision.

So happy. Then, my good eye started going up and down, seemed to dull its' vision , my balance was off.

So, I went back to patching my bad eye and immediately got stronger, balanced improved, vision improved inmy right eye. So, what's it all about mr. Brain?!

I will try the contact again slowly...

Went to yoga, lunch, out to dinner and a party....

Went to yoga, lunch, out to dinner and a party.....

Wasn't so long ago couldn't do all those things in one day.

Almost felt semi-normal!

Enjoyed comparing war stories with a friend who also had similar problems and we both agreed the regular humans don't get it.

They sympathize, they listen, they don't listen. Only another warrior gets it down to their soul....

My Daughter's 30th!

My Daughter's 30th Birthday and surprised her in Charleston, S.C.! Also celebrating a Very Special Engagement of Someone Very special to us....so much to see and tour. So much comes back to mind when I think of the South and it's history. I started out ok, but. My noon of course I faded and back to the hotel for me and rest time. 

I am happy to be with my family, but can't escape for a day that I now play a different game. It is always there .

I appreciate my family's love and support.

But, I know, it is always there.

I went to a party...

I went to a party the other night wearing my new soft contact lens. It felt so good to not have my eye bandaged and my face repaired with plastic surgery ! I was doing fine until the party got crowded, the lights were down and some live music started playing. I immediately felt dizzy, sat down and parched my eye with the lens.

I am sooo much better but still have limitations.
At least I am much better, and realize it is so much better, but will never be like it was.

I drove a little farther than I usually drive....

I drove a little,further Thani usually drive since I was sure I knew the way . Of course, I got lost and drove around in circles for 45 min.s. I pulled over and let out a yell of frustration, calmed down and started to use my GPS on my phone. More frustration. I had two driving apps and used the wrong one which I couldn't get to work right. Natch. So, finally I just had to find my way there and made it. I was tempted to go home, but I was so glad I stayed. I have started to visit Rosie, an Auschwitz survivor from Hungary. We both enjoyed our visit immensely. I just always have to remember to Keep My Brave on and stay determined. I am a one eyed driver and will be for the rest of my life.

Much news to tell.....

much news to tell, but before I begin I would like to stop and pay tribute to my beloved Father who I lost last February at 97... It really doesn't matter how old a person is and yes I know he led a full life, I miss him so much.... He fought bravely in WW2 and càme home to his wife, my Mom who he loved deeply. Thank you for being my Father, thank you for fighting for our freedom, thank you for the beautiful life you provided for us. Love, your loving daughter ...