Rare Disease Day!

https://www.facebook.com/nicki.milin/videos/o.21515208367/1352274851462538/?type=2&theater&notif_t=video_processed&notif_id=1488292554160235

My introduction to my video blog

Noticed a difference...

Noticed a difference from going to a physical therapist in just a few days.

I always complain that my head hurts and the p.t.suggested that I wear a soft collar most of the time.

I am practicing turning y head to the left a bit every two hours.Six years out from my surgery and I can't turn left nor lay flat.

So far, the biggest change is my head not throbbing  with pain.

I can feel the difference....

I remember when I first...

I remember whenI first took my eye patch off for a minute that I was falling off the edge of a cliff...

I have noticed that I can take it off for up to five intestinal and if I am just looking straight ahead I can see pretty well.....

Always check out a new script....

Always check out a new script. Talk to your doctor after you discuss which drug you’re going to be adding, make sure you ask him if it agrees with your other meds before you take the script to your drugstore. Also I recommend titrating the drug to see if it agrees with you. It has happened on occasion where a new drug makes me sick and just doesn’t agree with my system. So, I always recommend go slowly for the first two weeks and then go up to the amount that the doctor recommended.

Symptoms

Symptoms

There is so much to say about different symptoms, the most common wind is a headache vertigo sometimes a seizure feeling dizzy you just know that your body isn’t feeling right. I first recommend that you go to the emergency room right away do not hesitate. Second thing make sure you ask for an MRI at least a CAT scan to have them see what’s going on in your brain. If they want to do an MRI they will probably best for you to the neural/teaching hospital. Make sure you have an MRI in a full to MRI that should have it done in a T3 machine which is most preferable because they can see the most on that machine, that they do all the extra testing associated with the brain. Make sure you go to a teaching hospital see a neural who is experienced with brain research nowadays it’s so easy to look upon lying, contact the cavernous angioma alliance society and they can help you, make sure you at least get to a teaching hospital with the narrow who has experience with the brain. Do not just have them say your fine and go home make sure that testing is done because most hospitals are still not familiar with brain bleeds which are really strokes. A brain bleed is a blood vessel in your brain that doesn’t have a full wall it’s like a raspberry that is leaking. An aneurysm is a brain bleed that I call a gusher that is a big bleed that you can possibly die right away. Nowadays, if you have symptoms and rushed to an ER they can hopefully save you they might be able to put a shunt in your brain there are things that they can do that they couldn’t do years ago. I myself was so naïve when I had my brain bleed my big one. I had been having them since I was eight years old but when I had the big one I myself did not go running to the hospital which was a big mistake. Fortunately I’m here today to warn you.

N blood thinners ....

No blood thinners for us brain bleeders!

No aspirin, no fish oil!

Went to the dizzy doc for a check up...

Went to the dizzy doc for a check up and he decided to try a muscle relaxer for my eye that has a nystagmus , in other words, it twitters... So annoying!!!!!

And also, I have a cataract starting,,,,,,

How can Donald make fun of someone with....

How can Donald make fun of a journalist with a disability> Like we don't have enough troubles we have somebody running for President make fun of our props like we don't have enough issues???

My neck...

My neck is writhing in pain today...

I thought it was getting better for the longest time and now I am trending downhill.

Didn't sleep well....

Didn't sleep well last night. Took my second dose of nuvigil a little late and too much reading and writing. Got to use the Dragon program more!!!!

When people don't call...

When people don't call who you expect to call was at first hurtful. The good news is the people who do call and let you know how much they care and lend their support.

We are not DISabled, not handicapped, crippled....

We are not DISabled, crippled, handicapped and all those other yech words you have for us-we are brave, tough, courageous, Warriors !!! 

You have a lot to learn from us!

Remember when you use to have a heart throb?

Remember when you use to have a heart throb? Now, I have a throbbing head ever since I had my. Brain surgery 6 years ago.

Thank you Muhammed Ali...

Thank you Muhammd Ali fr leading us all, every creed and color! Now we must sting like a bee and stamp out injustice and bigotry.what courage growing up in a time of Jim Crow laws, but he taught us not to be afraid ...so now we must carry the torch of freedom, peace, justice, wisdom and make our voices be heard for all.

Yesterday I met a friend....

Yesterday I met a new friend who is another warrior. I could tell when I was speaking to her that she was new to dealing with the trauma of brain bleeds. I remember being in the place that she was and she knew that I could feel her pain and that I walked in her shoes and I will always walk in those shoes. I hope I can help her and it will be a mutual relationship because we need each other because we understand each other in a way that other people cannot. There is so much to know about the brain brain bleeds dealing with the emotional the psychological family the surgeries. So, it is the start of a new relationship.

When you travel...

When you travel purchase brightly colored luggage so it will be easier to find.

Use a wheelchair to get to the gates.

Make sure you leave enough rest time everyday.

Try to stay close to the airport I'd you can, no long cab rides.

Wear tennis shoes.

Don't always listen to your doc ...

Don't always listen to your doc, keep your own records, look things up on line and remember every case is different. 

A since I had my brain surgery my head and neck ache. I do a lot of things to deal with the pain with my best luck being Botox, massage, ice, moist, heat, Tylenol when it is unbearable. 

I was using a neck brace at nice for the. Throbbing hard and neck pain, my Neuro said not to. I asked around and the verdict was to go ahead and use it as needed when you are sleeping. Zit will not cause atrophy because I won't be wearing it all the time and I nay use it as needed.

So, don't forget about good old common sense!!!!

I went to my niece's graduation yesterday

I went to my nieces’ graduation yesterday; she got a Master’s degree from the School of Social Work. I found it particularly moving since I have been on the receiving, and also on the giving end of social work. I practically cried all the way through. It made me think of how many people have been helped by social worker myself included and the effect I have helped on helping my friends in many different ways. It really does take a village, it really does help, and it really does make a difference when we all help each other listen to each other, care for each other, treat everybody’s lives as important as the next person. I really tried to apply it to myself, I will never be whole again, I have limitations, I am now a wounded warrior, but just as important as anybody else. It was important to remind myself and hear this. I sometimes forget this and it reinforced how important it is to live every day to the best of my ability.

This articla is about a 71 year old actress! Check it out!

 This article is about a 71 year old actress, who had a brain bleed on stage and lived to tell the tail. 
http://nyp.st/1W7kYul