Monday, February 8, 2016

My Medically Induced Coma - My Story from 2009 - 2016

Medically Induced Coma 

My Personal Horror Story – How I Lost 6 Weeks after Bariatric Surgery


How I lost 6 weeks - March 2009

Comparison photo of me then 2005 and now 2015.
 
            Me in my power wheelchair in 2005 and me 2015


WHAT HAPPENED???

That was a thought that went through my mind as my caregiver handed me a Stuffed toy musical Bunny. Last I remember was I was at the ER with horrible pains in my tummy. I had been home 3 days from my Gastric Bypass operation. I thought things were going well. My daughter Justine came to stay with me for overnights and my regular care giver attended me the daytime. The days after the surgery were a blur. I really do not remember anything except waiting in the lobby in my wheelchair while my caregiver got my meds for home. It was 2 shopping bags full of things and instructions. Aftercare for gastric bypass [ g-pass] is quite the ordeal. Since my gastric bypass had many complications, it was not a normal operation/recovery.
My story is about the after effects of what went wrong.

I do not remember but apparently my care giver told me that when they operated for the g-pass, they found a lot of scar tissue [adhesions]. This made a standard g-pass time double.

This is a very long story. It is over 8 thousand words. It was necessary to included all this information so you as the reader could understand fully what I have been through, what I currently have to go through as a result of the operation and the complications that followed.  

This blog post may be of assistance to others who are thinking about gastric bypass and the after effects, even normal after effects as far as what to eat as I have a lot of information about eating foods after g-pass surgery. 

ALL PHOTOS - UNLESS OTHER WISE NOTED - ARE COPYRIGHTED BY ME



What happened in the Operating Room - March 2009
Photo of me showing how long my hair was 5 years before my operation. By the time I had the operation I could sit on my hair. 


                                        Me in 2004

What happened in the OR?

They repaired holes that happened when they did the operation as it was ongoing. Some of the holes leaked. I went septic. Fluids made bacteria in my tummy outside the intestines. 

Septic
So three days after the operation at the ER they ordered a scan of my tummy. I was out of it with pain and they gave me pain medications.
Apparently somewhere along the line when I was left alone I aspirated my vomit. I had been throwing up constantly for 12 hours. I developed a syndrome called Acquired Respiratory Distress Syndrome or ARDS. My lungs were infected and were shutting down.
The University of Washington Seattle hospital did a repair operation and told my family that my lungs and kidneys shut down. I was in very critical condition and was not expected to live. So I was placed on a respirator and all the hookups you can imagine. I do not remember anything except the ER on the night of March 13th, 2009.

Four Operations in two months

My first operation for the original g-pass was Mar 9, 2009
My 2nd operation repair was March 15th
My third operation for a Tracheostomy was mid April 2009
My 4th operation for a massive abscess that was the size of a banana was removed May 2009.

I was in a medically induced coma on and off for about a month. I do not recall anything except I was crying and begging them not to tie down my hands at the wrists. I kept pulling out the tubes so they had to do that. This is very common for patients to pull out their tubes. 

Next thing I know my caregiver is handing me this bunny. I thought: “Why a bunny?”
I loved bunnies – but it still did not occur to me. Then they handed me a hospital plastic washtub full of cards and mail. I had received over 200 get well cards!
I saw the Easter Cards and thought. Wow! Easter! Then it hit me 6 weeks passed and I missed it…

I could not talk

I had the trach so I could not talk, I had to write down all my questions and requests. Gratefully a lot of the nurses answered my questions with my written notes and my untrained sign language.  I knew a bit of signs as my sister in law's sister is deaf. 

It was very frustrating. I had reactions to a lot of the medications and I could not keep it straight what was happening a lot of the times. After the first 6 weeks I was sent to the rehab after being at the hospital. I had several roommates at this facility. I did not have my glasses until I was at the last room I was in. So I could not see much. In the last room I was in my roommate had a trach also, so we could not talk to each other. I could not see her either because the curtain was always partly closed. I saw her visitors and they talked to me occasionally. When the assistants who came in to help me remembered to plug my bed back in, things were good. The bed had a special air mattress that was electric. They were unplugging the bed to change the sheets. They would forget to plug the bed back in and give me my call button. 
There was only one television and she did not change the channels too much. A lot of the time I did not have access to the tv controller.  It was very frustrating. 





PressureGuard APM Mattress


Some days I did not have my call button or my phone. I was using the phone I would call the nurses station later to call the Respiratory therapist [RT] when my tube was clogged up and I needed to be suctioned. I was instructed to tap on the phone 1 time for the nurse, two times for the RT, 3 times for whatever else.

A couple of times my trach was clogged and I could not call on the phone or the call button. I started banging on the metal on the rails of my bed to get someone's attention. The only thing I had to bang on the bed rail was a plastic comb!
That was scary to be choking on my built up secretions in the trach and no one to help me! The medication made me very scared.

I was so glad when I was able to learn how to suction myself later when they moved me back to U of W. I wanted out of that Rehab!

I told my daughter and she had to complain to the staff about my shoddy treatment. I was so glad to get out of there. I begged my daughter to not put me back there when it was time to leave the hospital. Thankfully there was a rehab back where my apartment was in Sequim on the Olympic Peninsula.

I was not happy at this rehab

Too many things went wrong besides getting MERSA. I did not have any visitors except my caregiver came to visit a times in that month. I asked some of the young people from church locally to come in. They did one time. I continued to get letters and cards which were greatly appreciated. It was a long drive over an hour from Sequim to Seattle for most people. 

I read the cards and letters over and over again. I could not get them to plug in my boom box Radio/CD player that my daughter sent with lots of CD’s. So I did not have any music or radio. My portable CD player would not work. So I played the channel on the TV that had a speaker next to my head. There was a community access channel that played music 24/7. I told them NOT to turn out my light or turn off the TV. Several times that happened and I woke up scared to death. I cannot handle a dark room and I needed the music at that time. The medication they gave me, Dilaudid [side effects] was causing me to have insomnia, sweating, itching and strange dreams and major hallucinations! I think it was the wrong med for me since I was already having lung complications. I was really wroth with this rehab!!

I could hardly move

Aside from all the complications I had become so weak I had to learn to move and use my muscles all over again. It was really hard to d. I wanted to get out of bed, but I was so weak and afraid I could not even sit up. I was very dizzy. The first time I sat on the edge of the bed I felt very faint. The head of my bed was kept at a raised 30 degrees anyway because of my trach. I was not allowed to lay flat for almost 4 months.

The Trach

The trach was scary a lot of the times it became clogged and I had to learn to help it along and do suction myself. I got pretty good after awhile. You have to get weaned off the machine and learn to breath all over again with room air.


Man with a Trach
Trach equipement


Breathing a percentage of room air

This was scary I had to learn to breath and talk at the same time, not so easy when you are on a machine. I had not talked for almost two months.  So with a special trach attachment** at the end of my trach opening I had to practice each day to use it. I got to the point I could use it for 15 minutes and they said I could call my Mom and kids. I had my caregiver bring my cell phone and had them charge it up.

** Passy-Muir Speaking valve 


                      Passy-Muir Speaking valve and Trach

Phone home

I am crying right now as I think back on that first phone call. It was so hard to talk physically and mentally, but I managed to talk to Mom a few minutes. Then I called my oldest daughter. A few days later I started to call my other 3 kids and brother on a regular basis.

Abscess
So I was in a lot of pain in my tummy.
I was still getting protein via tube to my tummy.  It kept hurting there and finally they drew a line around the red swollen spot. I developed an abscess where the tube from my tummy was attached to the outside of my body. I was given massive doses of antibiotics. That did not work. So I had to have the abscess surgically removed because it was beyond draining point.
I do remember going in the ambulance to the Hospital from Rehab and waiting in the cold prep area for the operation. When I woke up I was in a room all by myself. I was back if the main U of W Hospital at Seattle and I was in isolation. Everyone who came in to see me had to have a gown and mask on. I was never told why. Some have suggested I had MERSA. 
Methicillin-resistant Staphylococcus aureus ** is a bacterium responsible for several difficult-to-treat infections in humans. I must have picked it up in the Rehab hospital. Yikes!

** MERSA 

Abscess

The huge abscess had to heal from the inside out. That meant I had to have the open wound cleaned 2 times a day. It is called a Wet-to-Dry Dressing change. All the nerve endings were exposed. Yikes that hurts!
I had to have a dose of painkiller as they were doing it for the first 2 weeks. They gave me a “bolus” of medication delivered directly to my veins through the intravenous drip. That made a quick delivery of the pain med so I could endure the pain of the exposed nerves. Thankfully I could stay at the Hospital and recover from the MERSA and the abscess at a better place than at the rehab.

Recovery

Finally in June I was weaned from the Trach and I could have it removed. There are a series of steps they do to check your breathing and swallowing. I finally passed the test and was able to have the Trach removed.  My last trach cap allowed me to talk a lot which was nice and I could talk a lot on the phone. The only problem was that I was still in isolation and it was really hard. It also was a very hot summer and the meds made me really warm. I also had a fever because of the MERSA. My last trach cap was loose and kept flying off! I would forget I had to hold it before I talked. LOL!!!

Food and air – get out of bed

As soon as I could show I could eat a certain amount of calories [ I forget how much] to get my close to the Nutritionist’s idea of grams of Protein a day – I could have the g-tube removed. They had set up a g-tube in my nose down my throat after I had the abscess removal operation.
I was “full” on 1/4 a cup of soup. It was hard to eat because everything had a very strong odor. When you breathe through the trach and not your nose or mouth your smell is blocked. When that is removed then your sense of smell is super sensitive.  So now everything was very odorous! I started being very nauseous and had to have injections for that. A lot of it was because I was not used to sitting up in a wheelchair. Thank goodness I had a TV to myself the whole time I was back at the Hospital.

Breathe

Now I could breathe 100% room air, I could eat some and had the g – tube removed. The abscess was healing and I still had to stay in the Hospital until they could discharge me to a special rehab facility to begin my rehab to evental walking. The open wound from the abcess operation had to be a certain size closed for me to be discharged. The wound was 10 inches long.  Looks like I was stabbed for sure!

I was feeling much better, the tubes and wires were all slowly being removed. I could talk and did not have to write notes. I kept a lot of my notes to remind me of what happened.

Moving day

Finally the day came and I was on my way out the door. I still had problems moving around and they had to use the sling on me to transfer me from the bed to a wheelchair. So where ever I went next had to have the sling available. I wanted to be back to my area where I was living, in Sequim on the Olympic Peninsula area west of Seattle, Washington.

Rehab 2 months June 2009 to Aug 2009



Sequim Rehab Center exercise room 


March 2009 to June 2009 -Three months since I could not get out of bed

So here is was June 2009. I was bedridden. I could not get out of bed without the sling. I could barely handle sitting up with out feeling dizzy.





Bariatric bed with overhead rails and grab bar
The bed I had could be raised and lowered




Sling to get you out of bed

Time for rehab to get my body to sit up, get out of bed and sit in the wheelchair by myself.
Wow! What a task. I cried the first week I was in so much pain and stress. They gave me a rehab specialist who was too demanding. He was trying to get me to lift 3 pound weights when I could hardly lift a spoon to my face. I complained to him and so we set up a meeting and he was better. Some days I begged off the rehab. I just wanted to sleep.

I was not alone

I had a roommate, the first time since May of 2009, that I could talk to! 

It is something when you share a house with someone and you have you own bedroom you can go to for quiet. But when you are in the same room with someone 24/7 it takes some getting used to.
My roommate was bedridden like me. Kathleen was paralyzed from the waist down. She was there for life. She was the same age as me which was good. She was nice enough. The issue was that she slept a lot with the TV full blast! I asked her a lot of times to turn it down and she did but then it would be back up again the next day. I gave up. I should have asked someone to get me ear plugs, which I use now when I need to sleep in the day time. I use silicone ear plugs and they are great. 

Quiet

So I figured out that there was a certain part of the day when she would be gone, which was not long on her shower day 2 times a week. Every other week she would leave the premises in her own power wheelchair and go down town. Not much time to grab 40 winks peace and quiet… I did get some sleep here and there but not for long. I think I slept an average of 2 hours and 30 minutes at a time with lots of Interruptions inbetween. Sad news, I found out that she died in her sleep 6 months after I left rehab.

I just wanted to sleep

They did not let me sleep long. I had to learn how to pull my self up, scoot to the edge of the bed where they took a transfer board and slid it under my bum. I then had to slide on to the wheelchair. Easy to do when the wheelchair is the same height as the bed. The bed would not go any lower. So I had a slide ride down to the wheelchair. That was OK. Try pulling yourself UP onto the bed when your arms have turned to jelly from exercise.
So day after day I worked hard to get to the point I could get in and out of the wheelchair by myself.
Then I had to wheel to the chair commode then to the bathroom and take care of that business. It was hard at first and use the rails worked great.
I had stretchy rubber banding material that I exercised with to strengthen up my upper body and legs while sitting down.

Machines

You can see the sit down machine that is called a recumbent cross trainer. I had already used one in my Heart Rehab a year before. Then there was a sit down bike peddler. That was tough to get used to. After I mastered the wheelchair to bed and out again by myself after a month I had to start to use the walker. Finally after a few weeks I could wheel myself to the bathroom and down the hall. Then I could shower myself and finally stand for 7 minutes. It does not seem long to stand for 7 minutes, but it is hell when you have not done that for 5 months.
Soon I could walk along the indoor wooden path in the exercise room, that had rails. Just before I left I could walk the 4 stairs. It was helpful to have the two rails. Where I was moving to though, there was only one rail! So I had to practice with that as well. No easy task to pull yourself up the stairs with two arms and one rail. So all was going fine in that area. I was still weak as a kitten.

Foods

I threw up every meal and all my pills, I had to find a time when I could take all my pills without throwing up. At discharge from rehab I had lost 60 or more pounds in 5 months. Most of it I lost in the first 3 months. I had lost 30 pounds prior to my operation on 1200 calories a day for 3 weeks. That was really hard to do. So I had lost a overall total of 90 pounds at that point.

I could hardly find anything I could eat at the rehab. They would take whatever they made for everyone else except sandwiches and throw it in the blender and it tasted awful to me and it was just too dry. The rehab was just not set up for foods that are necessary for post gastric bypass clients. 
Finally I had to have my caregiver buy me some small 1/2 cans of soup with the pull tab tops. I could heat in the microwave that the nurses used. I could only eat mashed potatoes and soup. I found I could eat chili. I could eat bacon well done of all things. It was wild the things I could not eat and the things I could. One thing you cannot eat with g-pass is dry foods, chicken or hunks of meat.  You need to eat soups, well cooked meats that are finely chopped. It is better to use ground meat which I did later when I got home.  Scrambled eggs with salsa was a favorite for me for 6 months until I could eat more foods. It is suggested to use a protien drink for extra protein at 60 grams a day.  I was not even getting 500 calories in the rehab. I was loosing weight fast.

July 2009

Me July 2009 -  my hair was cut short as I reluctantly agreed

Here I am in July 2009 at the Rehab in Sequim where I was living from 2004 to 2011. I was in the wheelchair. My 2 daughters and some of their kids came to visit me. It was a good visit. I wanted to go out with them but the wheelchair I was using did not fold up and there was none other available to leave the rehab. It was just as well I was so easily fatigued then.

A friend came to visit me and she brought a laptop for me to use. That was awesome! I had a good amount of visitors while I was at this rehab for 2 months. Each one would bring me something I could use. 
I had to wheel myself and the table down to the visitation room. I pushed the little wheeled table that one uses in the hospital that holds your food and water that fits over your bed. No easy task while you are rolling yourself in the wheelchair at the same time. It was physical therapy. The visitation room had a Internet connection. The cord was long enough but there was no table in there. So that is why I needed the over the bed table with wheels. I could go online and check my email and send and receive messages. It exhausted me to just do that so I did not do any Internet surfing at all. But it was awesome I could do the email. It was so exhausting I  could only do this for less than an hour. 

PT and Group

There was a group exercise that was mandatory and you had to stand up and hold onto the walker and introduce your self. You had a “gait” belt around your midsection to which the PT held onto while you stood up from your wheelchair and back down again. Pretty soon I did not need help. This group exercise was once a week. You did some simple movement exercises and then they did a game. You tossed a ball and had to say something. Or throw the huge soft dice as they had paper horses go along a mat for a “horse race.” If your number won you got credit for the gift shop. I forgot to turn in my credits when I left. But that is OK I had fun and it was exercise and a social time which is important for rehab. In the Recreation room there was bingo, and some other games at times. They had some DVD’s you could borrow so I watched some movies on my laptop when headphones. They had books and magazines. I had my friends bring books and magazines for me as well. It was real hard to hold the books so I only read one book that had large print. I did not have my tape machine with talking books. I would have loved to have that with me. But there was enough to do I was never bored.
When I was at the hospital I had a catheter. I got an infection when I was at the rehab for a month between April and May. So the catheter was removed and I graduated to the bed pan. I used that until I could get out of bed myself and use my bathroom finally by the end of July. Bedpan use for 3 months is no fun. For a while I used adult diapers. I hated all of the above. I loved the shower. I only had to go one time in the recumbent [lawn chair like] shower chair. After that I could sit in the open shower chair. It is pretty much the commode chair with wheels. I also had a bedside commode to use when I could get out of bed with my walker before I was graduated to use the regular bathroom at night. I was glad when I graduated from all of those items to just the bathroom.
The shower chair was nice and they had a shower head with the hose. I finally was able to stand in the shower by myself. It is really embarrassing to take a shower with the nurse there, especially a male nurse when you are modest. There was one male nurse and he was really nice. I finally got used to him. 

I was in the rehab from June to August, and it was a good facility. It was clean and the workers were great. I had no problems there. There were a few ‘inmates’ who had issues that drove us crazy. One lady in her wheelchair would ram her wheelchair into our door repeatedly until the workers could drag her away. This happened for about two weeks. My room was right next to the nurses station. It was noisy at times so I had the door shut a lot.

Products I used to recover

My big concern was to have my hair grow back My hair was very long over 3 feet long and very thick. I agreed to cut it as it was falling out fast. It was cut at the nape of my neck. By 2013 it grew to over 25 inches long and quite wavy. It is only 1/3 the thickness. At first it was only 1/8th the thickness it was before. It was quite curly! I am so glad it grew back nicely after 5 years. I love the Biotin! My skin is still very dry and I continue to use the Lubriderm lotion or other good dry skin lotions.


Biotin 1000mcg, 100 Tablets

When I got home I found out that the best thing for hair to grow back was to take the Biotin tablets. My hair has grown back nicely and is starting to thicken up again. My nails are stronger, especially my toe nails. I wanted my fingernails to be stronger. I was surprised my toe nails became thicker. Most of all is my hair has become stronger and thicker! That was the best use of this product.


August 2009 to Feb 2010



Photo of me on the left and my best friend Linda who rented me a room in her home for 5 months.

Going home 5 months after the first operation

Finally in late August I was done with Rehab and they felt I was ready, I begged them to let me go! They had to check out where I was moving. My daughter closed down my apt and put all my things in storage. I was not expected to live for a month, so she felt it was best as she knew if I survived I would have to move in with some one after rehab. So my friend, my best friend now. said yes when I asked her if I could rent a room from her. She was going to be a part time caregiver for me and I would still have my other care giver for other things.
So all was ready and my bed and some things were waiting for me. What joy was that to have a QUIET room!
Yay! I could sleep when I wanted, eat when I wanted etc. I had my own bathroom and the shower had handicap rails. I had a walker to use.

Falling down

Oh dear. One week after I arrived I tripped on the floor heat register in the Kitchen with my dumb huge floppy slippers. I threw those away on the spot. I could not get up. My roommate brought a chair with wheels for me and I tried to pull myself up to no avail. Finally my other care giver arrived and the both of them were able to assist me to stand up. I was very careful after that not to fall. Well I did fall in the bedroom two times after that and was able to get up OK with out help. It hurt my knees badly from the Kitchen floor but the bedroom had the rug so it was not too bad. I was not left alone in the house until a month later. Then it was all set so I could get what I needed while they were gone. Soon I was feeling better and had a great Christmas with my one daughter came to visit with her one son and my roommates family.

Pulling myself up the stairs

The house I was staying at had 5 stairs on the front porch and the back porch. So it did not matter which way I came in the house. It took me awhile to get up all five stairs with out stopping. The back stairs rail was on the right side so that worked better. Later I could use the front stairs with the rail on the left side.  I would do one stair and rest and continue on. I still have issues with stairs, but I no longer have to pull all my weight up the stairs. 

On my own

In February the next year my number came up for rental in a gated Senior apartment complex that was Section 8 for low income. Yay! I had to wait a year later for my 30% discount but was happy with the 20% I assumed.
So things went really well. I was able to do a lot for myself. I had my power wheelchair and I could power wheel myself down town to the store I wanted to go to as well as other shops and the bus. I used Para-transit when I went 20 miles away to my volunteer job later in 2010.
A year after my first operation I had lost 100 pounds. I still had 100 to go. But it was a big start. A very stressful was to do it though. I was a year behind the average person who goes through a gastric bypass operation because of all my complications.

My new digs

This apartment had handicap rails in the bathroom, 2 call buttons with the string to the floor, one in the bathroom and one in the bedroom. It had a huge kitchen and a good size bathroom and a very large bedroom for my adjustable bed. I got a kitty a month after I moved in. It was working out great.

Permanent damage

I have some permanent damage from all that I suffered. My right thigh is still numb which has affected a saucer size section on top of the thigh. At first my whole right thigh was numb on top. 5 years later is is now only numb a 2 x 2 inch patch. 
I have a lump from a deep bed sore on my bum that is still there. It has not gotten smaller. It is not painful – thank goodness. It looks odd.
My throat is sore all the time and there is damage to the vocal cords – I get hoarse a lot. I could not sing until 5 years later, but just barely and alto only. I used to sing soprano. 

My lungs  are tight still as far as breathing. I have Diffuse lung disease from damage before and after the first operation. This is from the ARDS. I do not have to have supplemental oxygen, but I have a CPAP machine that I have been using since 2005 for sleep apnea. I was on oxygen concentrator for a few years in 2002 to 2005. 
My kidneys are back to "my normal." 
My muscles are better as I have been trying to keep up with my protein intake. I used to go with 60 grams a day now I only have about 40.
I am very weak still. I can barely feel well enough to get out of the house once a month to go visit my Mom and Brother. It’s a 8 hour round trip drive and it takes the stuffing out of me. My daughter and son drive us and take turns driving. We pick Mom up first and then its 2 hour to brother. Then the 4 hour return.
My legs cramp up and are painful at times. I do some exercises while I lay in bed to work out the cramps. My legs are sore when I walk around at the grocery store or when we go places. I know that will improve with time.
My sleep is still chaotic, but that is nothing new.
I am unable to loose anymore weight. As soon as I could eat well and stop throwing up every day and less and less often, I started to gain weight back. I gained back 30 pounds by 2011. I know some of it is water weight. I am not worried about it now. I am so grateful I can breath unaided, walk unaided with out a walker in my house, talk, and eat with out throwing up, that nothing is more important right now.

Prayers

I had a lot of people praying for me so I have to give credit to the Lord above for my recovery. I know why I was given this trial and I am at peace with it. I would do it again as it was the thing that got my one daughter back on track and off drugs. It was her wake up call.

Now onto more recovery and branching out on my possibilities.
If you have read my other stories, you will see that I am legally blind. That was not anything to do with the operation mishap. I was born early as I mentioned and the damage occurred then as well as more loss over the years.

Goals

I have a lot of crafts I have been doing and I plan on learning more. Next up us learning to crochet beyond the basics.
I have not listed any durable medical equipment as I did not have to purchase any except a folding support cane. The rest were provided. I did get a Rollator Walkers that has a fold down seat hand breaks and 4 wheels. A local person was giving these items away that were abandoned from her storage locker business. So I got my own really nice walker. I use this when I have to go out of the house. It pains me still to walk more than 200 feet unaided. This was a result of degenerative disk disease, arthritis and bursitis. At least I do not have to use my power wheel chair anymore!

I have listed below my photos by year and the products that aided me in gaining strength and health.

July 2010



                                Me in March 2010

Here I am a year after the first operation. My hair was very long before I had to cut it when I was in the hospital. They told me my hair was falling out fast, so I said go ahead and cut it. You can see it was cut right to the nape of my neck. My daughter Justine has my pony tail hair and it is going to be made into a wig for my Grandson who has Alopecia. That is almost 3 feet of hair in length.
My hair is very thin and is only [3 years later] half the thickness it was before. It got down to about 1/8th of what it was. So the Biotin was a great help to grow back my hair. It was very curly at first. I had not had short hair for 20 years so it was a big surprise how curly it was at this time. It stayed curly until this year as it is now thicker and longer. It is back to 25 inches long [2013].


Oh No!
In October of 2010 I fell out of my power wheelchair in the apartment. I was leaning back with my feet up on the desk. That was a dumb thing to do… I turned sideways and fell out of the chair. I hit the floor, my cell phone flew out of my hand. I was able to retrieve it. as I was talking to my former. I chatted with her a bit as I assessed the damage. I was in a lot of pain. I was afraid to move as I was worried my back and hip was out. I have a low grade Spondylolisthesis in the spine as well as degenerative disk disease and when I fall it always gives me quite a time to heal.

Paramedics

So I decided I needed help. I had a Life alert system in place and so I told my friend I was going to call it. I had forgotten it would disconnect [land line] us and she would not be able to call me back until the life alert machine was returned to all clear. I was living in a gated Senior apartment complex. So the fire dept has the pass key to the front door and the on site manager opens my door. They got there quick. They assessed the situation. Then they rolled me with a sheet. It was decided to take me to the ER. The ER is 20 minutes away.

ER

Ex-rays were taken and I had not broken anything. Thank the Lord. I was in horrid pain though. The rude nurse yelled at me to open my eyes and demanded that I get out of bed and use the walker to leave the ER as they were done with me. I was in so much pain and they hurried me along that I strained all the muscles in my arm from my right shoulder to the wrist. I put too much weight on it. I told her I was blind and needed a wheel chair. I was very wroth with her. She apologized to my caregiver and said she was sorry for being so rude to me.

PT and Pool

As soon as I was able to I started PT for my right Rotator cuff [top of arm where it meets the shoulder] and my upper arm which was re-injured from the fall, my right hip from the fall and my back was stressed but did not get any damage.
I eventually healed and was back to "my normal" before I fell. Then I started the pool by myself. There was a rehab pool you could pay to use by yourself for 40 minutes. I bought a book of tickets for 2 months. That really helped a lot. 



                                         July 2010
You can still see how much the tracheostomy left a scar on my throat. I still have damage inside my throat. I can no longer sing second soprano. It hurts when I try to sing.

Alice my cat 2010 - 2011

Alice was a all black kitten of 3 or 4 months when I got her. I could not bring her with me when I moved to California because my Mom was allergic to cats. I found a good home for her with a lady who has other cats and goats on her acreage. 

Products I used in 2010

Professional Heating Pad

This is the best pain relief product I have every purchased!
It measures a generous 14" x 27" and weighs 3.8 pounds [shipping wt.] You can set it to over 125 degrees for an hour or less. I adjust it to my needs at the time. This is a professional quality heating pad. I had another that I was using that died a few months later as I was using it full time. I love this heating pad. 





                                          August 2010
I still look pretty tired here. But I was very happy. I had not gained back much at this point it has only been this last year that I gained back 20 more after the slow gain back of 10 the first 2 years. My Dr also reminded me I lost a lot of muscles, so muscles are heavier than fat or water. So he says not to worry, concentrate on building strength and health.

3 daughters one son

I think it may be confusing as I say my daughter this etc. So I have one daughter the youngest I live with from 2011 to 2015 in California. One middle daughter in Washington who stayed with me when I first got out of the hospital and my third daughter who I live with from 2015 to current. 

Big changes

That fall in late 2010 and some other things that happened to me early in 2011 while I was living alone had made me realize I should not live alone any more. So I made the decision to move back to California with my Mom March 2011.
I stayed with her for a short time as that did not work out and I needed a caregiver. Mom needed a caregiver as well and I could not be hers when I needed my own. She did not want to have a caregiver or have someone come in twice a week that she did not know. So I moved in with my youngest daughter and my son. My daughter became my caregiver. Later my Mom agreed to sign up for a caregiver as long as it was my daughter who did the work. So my daughter did that until my Mom fell 4 times and broke her disk and had to live full time in a care center in 2014. 

New house

Things were good there and I established Dr’s an care situations. I got a new CPAP machine, my 2nd since 2005. Prior to that I used an Oxygen concentrator in Utah for 2 years and one year in Washington. [Now on my third CPAP machine in 2016]
My daughter began to cook new foods for me and pretty much the same as I mentioned before. I started to use a lot more protein from other sources such as the ground beef and pulled pork.


2011 Products

The nutritionist recommended me to eat 60 grams of protein a day while I was recovering.

I found that I loved the taste of these Balance bars. The Lemon flavor has 14g Protein and 200 Calories.
It has a Balanced 40-30-30 Nutrition ratio. I was having 2 bars a day with other foods. The first year I could only tolerate eggs, cheese and yogurt for proteins. I could not eat too much cheese per day.

============

The Caramel protein bar also has a 40-30-30 nutrition
which means 40-percent carbohydrate; 30-percent protein; 30-percent dietary fat
Each bar has 15 Grams protein.

======

I tried several kinds of Protein powder and settled upon this brand which has 18 g protein per serving.
One thing I found is that with my diabetes I could not mix sugar and milk together or I had a dumping syndrome where the sugar would dump into my pancreas and cause all kinds of sugar drop and gain in a short time. Really awful feeling! Thank goodness my diabetes is now controlled solely on diet alone. I do not have to take insulin or pills anymore! Yay!
So I can only have a 1/4 serving of the protein powder with soy milk or almond milk. No ice cream at all!

===========

The Greek yogurt has less sugar [lactose] and a 6-ounce serving contains 15 to 20 grams of protein.

Whey Protein Isolate 
This protein powder tastes good and I can have a 1/4 serving at a time. I mix up a full serving and freeze the rest in 1/4 serving in a Dixie cup and have it later like a ice cream treat.


Fage Total Greek Yogurt
I have 6 oz of the Greek yogurt plain. I add some cinnamon, dash of Stevia, cut up banana and two tablespoons full of raw unsalted sunflower seeds. Great breakfast of any meal.


April 2012



July 2011

December 2011 We moved to a one bedroom garage turned into an apartment. We had 3 hens for 10 months so we had a lot of fresh eggs. That was really nice. We had a garden going and had a lot of fresh vegetables as well. I like to have fresh fruit like strawberries, melon when in season, orange and kiwi. I have to chop up the apple pretty good an can only eat 1/4 at a time. I still have trouble with raw veggies. I can have cucumber and I add that to the tuna, cooked salmon and the cooked eggs with the greens and home made dressing. I can only eat 1/2 orange at a time as well.

The trick is to eat very slow, one bite and wait 5 minutes. That is why I will eat at my computer desk that is easier to set the food aside while I look or type so I am busy. After the first two bites I know I have eaten and can wait, I have to eat like every 2 hours. Since some foods I can only eat such a small amount at a time it takes a while for it to go out of my tummy. If I wait too long then I am too hungry and will want to eat more faster and then I get sick.
Also I found out that really hot off the grill or stove or oven foods will make me throw up. I can’t eat foods hot, I have to wait until they are room temperature. I can have tea and hot chocolate hot but not boiling hot. I quit hot chocolate as the chocolate gave me asthma.  Soup hot is ok as long as it is not boiling. 

It took me more than 2 years to figure that out!
I have tried to eat 1/4 of a tiny hamburger by itself. It was not too good as it takes too long to exit my stomach and get stuck as it is too dry. My daughter makes this meatloaf in a muffin tin size with BBQ sauce, The meat has some ground sausage as well as ground beef. She adds a few flakes of grated carrot and other things. It comes out really soft and I can eat that cold. I like it smothered in soupy mashed potatoes. I use extra water and make the potatoes very soft and what I call soupy. 

Everyone has trouble with regular chicken. I was using chicken nuggets and chop those into fourths to really watery mashed potatoes.  I can eat things, but the way they are prepared and amounts and temperature are important.

I like to have 1/3 chopped cucumber or 1/4th of the English cucumber with the tuna, salmon or 2 Hard Boiled eggs. I can eat a small amount of fresh tomato.
My Daughter makes lentil chili or ground beef chili which I love both. I add some shredded Mexican cheese to that. My daughter has found some great recipes and I just add either a tomato sauce, a mushroom soup sauce or chicken stock sauce to whatever she is making so I can eat it. I can eat one small slice of very thin crust pizza either cheese or ground meat. I really like the pesto artichoke pizza. I have been able to eat some salami too. French bread goes well. I was able to eat a piece of french toast with strawberry jam. I ate it very slowly.


Dec 2011
I like biscuits and gravy, I just add a lot more of the gravy. That is one item I can order when we are out at the restaurant. I of course can only eat half a biscuit.  I get sick of chili all the time! I also can eat an over easy egg with a slice of cheese on french bread, slowly.
So I am doing well and daughter makes sure I have enough good proteins, not much sugar, and food available when she is gone that I can eat cold or reheated in the microwave. I stay away from the open flame and very sharp knives because of being legally blind. Even though I learned to do things totally blind at blind school, I still have problems of burning myself or cutting by accident. I use a very dull knife to chop my cucumber! If I am not well she will do that in advance for me.
She also makes a great soup that I have been making myself for 20 years. It has all veggies in it. We make a large batch, let it cool and put it in 1 cup containers in the freezer. I bring out what I need and defrost it over night in the fridge and reheat it the next day. I will add some of the refry beans she makes from scratch or black beans from scratch that we froze. She will also cook some Quinoa or other grain and I add a spoonful of that as well. I will add cheese, salsa to the refry beans for a meal, too.
She also makes the Spanish rice with brown rice. She makes a lot of her dishes in either the crock pot or pressure cooker. Her chili and lentil chili comes out awesome in the pressure cooker.
The trick is to have food cooked in advance, then there is always something for me that is good to eat and well with in my nutritional needs.  I can only eat a few spoonfuls of rice or pasta or quinoa. It has to be mixed with other things like the soup or sauce.

2012 Products

Bumble Bee Premium Tuna - 2 oz drained, is Calories: 50, Fat: 0.5 grams, Carbs: 0 grams, Protein: 13. I add 1 tbsp vinegar and 1 tbsp ranch dressing, 1 tbsp of dill relish and mix. I have it with fresh 1/2 cup fresh greens like kale or spinach. I do the same with either the salmon or 2 hard boiled eggs.

I get the fresh or salmon in the pouch when I am out and about. Salmon has 14 grams Protein.

=====

Sunflower seeds with the Greek yogurt
2 Tbsp. have:
3 carbs, 4 grams Protein, 11 grams fat, and 124 calories.

===============


Bumble Bee Foods Wild Pink Salmon, Skinless & Boneless, 5-Ounce Pouches 





                                        me 2012

How I am doing 4.5 years later.

July 19 2013
I am very happy I got to go to Washington to visit my six grand children. The two oldest have graduated from High School.

I have been able to add more foods to my diet and that helps to have a better choice. I still have trouble with raw veggies unless they are finely minced for my salad. I use a lot of Greek yogurt and we eat quite a lot of Vegan and Vegetarian foods. I really do not miss pork chops or steak as I cannot eat those foods.

Here is a photo of me July 19 2013. I am so happy that my hair has grown back so nicely. Of course it is colored as I have quite a lot of gray and white hair now, Haha!



                                                July 2013

December 2013
We have finally moved to a 3 bedroom house. I have my own bedroom and it has a big bathroom in it. The manager installed a very nice handicap rail for me getting in and out of the shower. I cannot do a bath, darn, but the rail is a big help. There is another parallel rail in the shower and I hold onto that as well while I am turning. I loose my balance easy.
We have our cats here and they love the bigger place. I can shut my door and they cannot bother me so I can get some good sleep!


Goals 2014

In 2014 I plan to go to the big pool for exercise until our pool here at the apartment opens in May. The apartment here has a lot of stairs and we are on the third floor. Thankfully there are rails on both sides of the stairs. After 8 stairs there is a landing. So I can rest a bit. I am doing much better on the stairs than I thought! Yay!



Legal Question

A question one might ask. Why did you not sue the hospital for malpractice. I did go to 2 attorneys and had them review the case. They obtained the records and did not charge me anything to review the records. They even mailed all the documents to me. Their conclusion was that the only misjudgment was that I was left alone for a time period with out anyone checking on me in the ER. The time was longer than recommended while I was waiting to either be transferred to the main hospital in Seattle or before I had the scan of my abdomen. That is when I think I aspirated. There was no record of me aspirating, no one witnessed it.
The second attorney flat out refused me. So I figured it must not be in the cards for me to have a lawsuit. I did check online and most of the cases that I could find on my own that were successful in their winning their lawsuit for some one who had suffered from ARDS, were patients who died. Had I died, my kids could have sued.


2013 - 2016



                            Me in 2014

2014 I have had a bad year. I have gained back 50 pounds from the 110 that I had lost 5 years ago. I am sad about that. My health issues have been keeping me from exercise. My hip has bursitis and arthritis. I have degenerative disk disease and so with all the pain I do not get out but one or two days a month. I am on the third floor and there is no elevator. We are looking to move again so we will be in a house on the ground level with a yard. I can walk around in the yard and hope to get some elevated garden in pots to do.

Dec 2015

As of July 2015 I am in a three bedroom three bathroom home with my oldest daughter who is my new caregiver. Her husband and two teen daughters also live here.  The house is in Spokane Washington state. 

PT and Pool Therapy 2016

I have started PT for by left hip which needs replacement. I have to wait for that operation.  I completed 4 PT sessions and now will start Pool therapy next week [Feb 2016].
I really like the pool therapy and it has really helped a lot int he past. 

There are lost of blog posts about my new place in Spokane.


Thanks for stopping by to read my story! 

Thursday, January 28, 2016

1949 to 1997 - School before and after ADA help

How I lived as a blind baby, child and my school years

This is a combination of stories of how I managed to live being legally blind as a baby, child and my school years before and after help via ADA Compliance.  

Before my first pair of glasses
1949  - 1952
Before I got my first pair of glasses I kept pretty much to a high chair, the floor, the sofa or the bed - unless I was being held. I actually tried to eat some cigarette butts that I thought was candy in a pretty ashtray.  I thought it was the candy dish my Mom sat out for guests. Grandma came to visit us and she usually brought candy with her. When Mom was not looking I tried to eat some of the "candy".
Oh dear!

It is a difficult job raising a premature baby and a blind toddler without suggestions!

I was born at 28 weeks or 7 months. I weighed 3 pounds 15 ounces. I lost the 15 ounces right away. In 1949 they placed babies in an incubator with oxygen. Not much they could do for the babies. It was not until ten years later they figured out that the oxygen mix retarded the growth of the vessels and veins in the eyes. There fore when taken out of that environment the vessels in the eyes blew a gasket literally.  That is how the damaged occurred in my eyes at birth.  There are about 5 stages of damage. My left eye is about a 4 where my right eye is about a 2.  The famous Steve Wonder suffers from the same malady eye disease as me. He is totally blind in both eyes.

This is a photo of me when I was about a
year old and my brother who is two years older. There was just the two of us kids in the family.

My first pair of glasses - age 3 - 1953

I do not really remember getting glasses. I do remember Mom had an eye chart in the house that I had to learn what the pictures on the chart. There was a ball, a star, a boat and things like that on the chart and I had to know the name of the object. So when I knew all the names of each object and could say them back to Mom, I was taken to the eye surgeon’s office to be tested. The night before I was tested Mom put drops in my eye.
The next day the nurses put more drops in my eye and I had to wait until my eyes were dilated so the eye surgeon could look at my retinas to see how much vision I had.


Toddler eye chart from the 1950's and modern chart

It was determined that I could be helped with lenses for my right eye only. My left eye was too damaged and would not be helped at all by any lenses. My eyes were crossed and I could not control my left eye.

So they put patches on my right eye and made me use the muscles in my left eye to strengthen them. When they felt my muscles were well controlled, I got my first pair of glasses. I remember having to do this a few different times between the ages of 3 and 7.

My first pair of glasses bothered me so bad I buried them in the back yard. I broke my glasses a lot, too because I would take them off and then someone would step on them. My parents could not afford to keep buying me glasses and I went without a few times or had to wear the patched up broken ones.


Photo of me and my First pair of glasses age 3


My glasses age 3 through age 8
I had no idea I was “legally blind.” My parents never used that term with me. They always said I had a “bad eye.” No one ever said I was part blind or used the word blind in any way. I was never trained to accommodate for my vision loss. I managed to get through grammar school as the print was large enough that I could get by with the text books and the homework. I started to have problems in about the third grade as the print got smaller.

My glasses were always plastic lenses the “cat’s eye” style of the 50′s and 60′s. They all had real glass lenses that were very thick. I do not know what prescription started out with but I am sure it was at least a minus 6.00 lens in the right eye. The correction was for distance and astigmatism. The left lens was made the same number – just so there was a lens in the glasses. It did nothing for my vision in the left eye. They called that lens a blank or  “balance.”



Me age 10
My right eye stays closed about half mast, as I call it. The iris stays open as well and the light hurts my right eye. I also have Amblyopia. When I go outside or some one uses a flash camera indoors for photography or there is a lot of bright light indoors it really bothers me and gives me a headache. You can see that I am half closing the eye in the photo here with my cousins when I was 10.


Ages 8 through 18


So by the time I was in Junior High School I could not read the text books very well and could not read the paperbacks at all. I would try to read some and then I got massive headaches. I did not know how to study very well. I would listen in class and that is how I learned from listening. I had simple math errors that stayed with me until I was 25! No wonder I could not balance my checkbook – I rarely used one anyway. I mostly dealt with cash. I do not know how I got by all those years with out help. I never even used a magnifying glass until I was 32!

I managed to get by and faked my way through to graduate from High School with a 2.5 GPA. Needless to say my test results were no measure of my intelligence. I was not allowed to take certain electives in High School because I could not do the standardized tests that are mandatory through school districts. I would draw patterns with the order of my answers in the little circles of the multiple choice questions on the tests. The print was too small for me to read. No one ever thought to ask if I had a vision problem. They assumed because I had glasses every thing was “fine.”

My life with contact lenses
One lens




me with contact lens age 17

My first contact ‘lens’
I was so excited when I got my first contact lens. I was 17 1/2 years old. I only needed one as I only had correctable vision in my right eye.  I did well with other areas but not with reading. I did learn to sew and cook. I really liked those two subjects. I was no gourmet or fabulous couture designer, but I made good food and nice clothes. Mom had to sew my zippers though as that was too intricate to do accurately. Did I mention how many times I sewed my fingers and or got the machine needle in my thumb??? I felt like a pincushion.


Wire rims


After I used the first contact lens for 2 years, I went back to glasses and got some of those wire rim glasses. I was continuously getting eye infections despite meticulous cleaning of the lens. Then a few years later I tried a soft contact lens and that was OK for a few years. Then back to glasses. The BIG ones! I really hated those glasses. It was difficult to find a frame you like when the vendors only had 90% of what was the fashion at the time, which were those ugly huge frames. So I had 3 pairs of those ugly BIG glasses. Then came the 80′s and I got some Aviator glasses that had the new “photo gray” sunglasses that are what they call ‘Transitions’ today.

I had several prescription sunglasses. One set were the Aviator style was something like a minus 5 with the correction for astigmatism. I used one disposable contact lens with the glasses. I think that was about a minus 3. Lastly I used a minus 9 with astigmatism correction. That was the end of the contact lens and BIG glasses adventure.

I have not used a contact lens since 1992.
I now use wire rim glasses and have used plastic frames as well. The plastic frames break easy at the temples where the arms connect. My distance glasses today are minus 12.75 with the correction for the astigmatism. My vision has gotten worse and I have now developed cataracts and Glaucoma. My eyes are too sensitive to have an operation.



Photo of me and my husband in 1969  We both wore John Lennon style glasses.


Bifocals Yikes!
Women's bifocals

One time they talked me into bifocals because the difference between my distance needs and my reading needs were getting larger. With these bifocals I fell down too many times.
That was the end of my adventure with bifocals. I got back to a regular pair of glasses and have had the same the rest of my life to date.




Me and my youngest daughter and her father 1987 - those huge ugly glasses 

How I got through from age 18 to 32 with out any adaptive equipment

How I tried to go to 4 different colleges with out any help for a person who was legally blind. 


Facts about college with out help for the blind before 1990


Before College

I did not know I was legally blind until I was age 13.
They eye Doctor told my parents I was low vision because I had high myopia in my one eye as a child. They knew I did not have much of any vision in the other eye.
I was placed in standard public schools. For some reason that was what was chosen for me at the time in the 50's.

I got smacked with a ruler on the back of my neck - metal side for having 'fallen asleep in class." I was *NOT* asleep. I could not read the book and my face was literally in the book so I could read it. The school was very apologetic after they heard from my parents for corporal punishment with out reason.

One time one substitute teacher 'bolded' the lines for me on the paper in 2nd grade. No other help from any of the other teachers in any schools until I was in college when I was 42. I was marked as lazy etc. What I had was a physical disability for lack of proper help.

As I progressed in grade levels the book print size got smaller. I was legally blind by the time I was 13, that is I could not read paperbacks or any print that was less than 16 point font.
I got headaches and so I did not read the books. I tried to take the tests and began to fail in my grades.
I passed classes where I could memorize things and remember them for the tests.
Some how I managed to get by and graduate High School with a 2.5 GPA.

Supplies:
With the 10 basic products as my *ONLY* help to get me through college before 1980, I wonder what the younger kids think about how they can do their homework with out the help of a computer! I did not use a slide rule for Math, nor did I use a calculator which was available later. After 1980 I had my first electronic calculator.


                                 Manual drawing compass
1. 3 ring blue denim binder
2. lined binder paper/typewriter blank paper
3. number 2 pencils
4. the first ball point pens
5. wood ruler with metal edge
6. manual typewriter
7. "Pee Chee" folder [paper folder]
8. "metal compass" that holds a pencil to make a circle
9. rubber eraser/ round eraser with brush for typewriter
10. paper dictionary

           Before White Out Liquid paper there was this
           Round eraser with brush for typewriter


                         Vintage 10 cent Pee-Chee folder

College
I attempted to attend classes at 4 colleges between the ages of 18 through 46. I had absolutely no help at all. I passed half of my classes. Details in the modules below.

1990 was a landmark year that went by unnoticed by me.
That is the year the American with Disabilities Act was passed by President George H W Bush.

I was attending a junior college in 1992. My counselor did not know I was legally blind. I did not know that I was either.

I knew all to well how bad it was for me to see things. My last week of driving I hit a parked car as I was turning the corner. Fortunately, no damage to either car, I just grazed it. I had quit driving. I got rides after that or had people drive my car.

Tuning point...

Colleges I attended 1968 - 1993
1. Rick's College AKA BYU Idaho,
2. College of Marin,
3. Empire College
4. SRJC  -  Santa Rosa Junior College


College One: Rick’s College AKA BYU Idaho
Fall Semester August 20, 1968
Classes: Shakespeare, English 101, Psychology 101, Early Childhood Education and Genealogy

ADA
none – not even a magnifying glass

What happened:
The print was way too small and could not read the Shakespeare book at all. I had already read a dozen of the books and knew a good percentage of the contents. I did not pass the tests.
I barely could read any of the other text books, I was always too tired from trying to read
I barely passed the semester with a 1.563
Quit and went back home from Idaho to California. I had 5 roommates in a 3 bedroom apartment.

Passed Genealogy, Psych 101, English 101, and Early Childhood education. Failed Shakespeare.

Left December 13, 1968

********************************

College two: College of Marin, Kentfield campus, Marin County, California
Spring 1969 
I signed up for 3 classes: English Literature, A cooking and a Sewing class.

What happened:
Before ADA
no help – not even a magnifying glass

I am not sure what happened but I quit after a month. I remember something about the students protesting and disrupting the English class. The English class was at night time and I was having trouble driving in the dark. The other classes were in the day time. I just could not concentrate.  I think my parents were like go to college or get a job. Since I was failing at both working jobs and college, I was very unhappy.  I got married that December. 

******************************

College three: Empire College
Santa Rosa, California
November 1981 to November 1982
Goal: Medical Office – back office, then changed to Medical office Assistant

What happened:
The print too small and I started to have more vision loss which resulted in my detached retina and operation. No computers on campus at the time in my classes. This was a private college and they had classes that were 4 weeks each. 

Completed: English 101, Medical Terminology and transcription,
Was not able to complete: Typing and filing, Math, and Back office Procedures. 

Left for the operation, tried to resume and failed as my vision was cloudy with “floaters” that they could not remove.

ADA not available in 1981-1982
no help, not even a magnifying glass.
Some help with tutoring, but no enlargement equipment of any type or text.

College Four:
Santa Rosa Junior College, California 1980 -1992
Goal: fun classes and then Office assistant – A/P

Classes: Women’s History, Poetry writing class – passed both classes before 1990

WordPerfect [Before Windows 3.1 GUI version] in 1989 and again in 1992, typing and Accounting in Fall 1981 and 1993. All classes taken over a long period of time and one or two classes at the most at a time.

What happened:
Passed: WordPerfect in 1989. For WP in 1992 got deathly ill on final day and failed to attend the final class. I do not recall asking if I could take a make up final. 
Accounting – failed after 2 classes, I could not read the book.
Passed Data Entry 1993.

ADA I was aware it was available in 1990
none – not even a magnifying glass


Bottom line
I tried so hard to learn and go to college. I was like a sponge I wanted to learn, but my plans were terribly frustrated because I could not see to read. I have no idea why no one noticed that I was putting the books up to my face to see to read or anything else while I was involved with education from the time I was 5 until I was 45.

I cried, laughed, prayed, yelled and screamed at myself for stupid reasons. I read until I could not see anything and had to sleep. I was very depressed and did not know why. It never occurred to me to talk to anyone about my vision loss. I was raised to think of myself as just a kid who had to wear glasses like some – very few at the time – other students in the 50′s. In the 60′s I could hardly study because it hurt my eyes and I got headaches.

At college I was so exhausted that first semester, I had to quit at the end of the semester. I went back home to my parents house and sleep for weeks. I got a job at the Phone company in San Francisco in the mail room. I was so tired that on July 4, 1969 I could barely see the screen to see the moon landing. I am so glad I was able to see it again many times after that many years later.

I had other jobs as outlined below. Again, I had no help with my jobs.

In between colleges - Jobs 1970 - 1998
I had jobs such as Sales associate – Cashier, Motel and cleaning private homes, and Child care.
In between colleges and marriage I had some jobs. Once I got to know where the keys were on the cash register I did not have to worry about keying in. The price tags were another matter, no scanners in those days!

As of 1990 when the ADA passed I did not even know about it. I was not good enough for an office job with the few classes I had taken and the computer experience I had since 1989. So I gave up and did child care.


How I got help at college as a legally blind student

1990 was a land mark year that went unnoticed by me. That is the year the American with Disabilities Act was passed by President Bush.

Turning point:
I heard about a job skills center and signed up for the program that would assist people to get a job.
The program teacher realized that I was legally blind and asked me how blind I was. I told them. They told me how I could get help to go to college and living expenses for me and my child.
They advised me to inquire with the California State
Department of Rehabilitation to be trained by them and go to college for the computer job I wanted!
Yay!!!!!!!!!!!



Here is what I looked like back in 1997

I enrolled at the Blind school in Utah for 6 months. In this photo I am using the four section white cane with the red section at the bottom. The top of the cane has a golf grip with a loop to hang on your hand when folded up into a smaller 13.5 inch section. It has an elastic cord to hold the 3 aluminum and graphite sections and the top together. I use this cane for travel when I was alone. I do not go out alone any more so I use the short white cane now with the hook top like a standard cane. It is for support as the long cane is not for support.


U.S. Department of Justice Americans with Disabilities Act

In 1990, America took a bold step forward when President George H. W. Bush signed into legislature the Americans with Disabilities Act [ADA].

With the act the college as well as other public places will pay for me to have people to take notes for me, make documents available in either large print or braille. They will help me with an assistive listening devices. They also will provide a video magnifier to help me see my text books.
ADA

The ADA helps to open barriers to employment and learning. They make accessible options for anyone with a disability in these areas: transportation, public accommodations, public services, telecommunications, among other areas.


Geoff Perel, my advocate:
So called into the Department of Rehab for my county in Santa Rosa, California. I got an appointment with Geoff and he interviewed me. I was told I had to go to an eye physician in San Francisco who was employed by the state of California. Dr August Colenbrander, MD was the eye doctor who worked at the Department of Ophthalmology at California Pacific Medical Center. He and his assistant preformed tests on me and my eyes to assess my vision. They then wrote up a letter to Geoff of their findings.

After the eye exam I got word a few weeks later from Geoff. It was determined that I am indeed legally blind. I was told I would be awarded disability income from the state and they would also pay for my education. Geoff then set up an individualized educational [IEP] and personal care plan for me.

This was awesome!

I could go to college and have an income to help me and my youngest daughter. So I got all signed up. I got a large back pay check from the time I signed up, not from the time I was really legally blind, which was since I was 13!

I was thinking about all those years working at motels and kitchens scrubbing the skin off my hands and elbows and getting degenerative disk disease from all the hard labor I had done not to mention lifting heavy children and all the chemicals I was exposed to and noise at the factory job. Argh!

I am just glad I survived it all.

I cannot believe I did not know I was eligible for disability and help! I wonder why my parents did not know either.


Gifts of equipment for my home:
A mobility specialist came out and brought items for my kitchen, bathroom and bedroom. 
She used a marker and made bump marks on my appliances and other places to help me know by feeling the bump dots. That made it easier to find things like numbers on the stove and switches.

I was in an apartment so I could not use the bump marker on the apartment laundry room.
My 20 year old daughter helped me by coming to clean my apartment especially when I was ill. She was paid by In Home Support Services [IHSS]. Later and since then I have had IHSS help me. My youngest daughter  was my caregiver from 2011 to 2015. Currently my oldest daughter is my caregiver and is paid by the state for 30 hours a month. We rent a 4 bedroom 3 bathroom house together with her husband and two daughters. 

Child care:
The state also provided child care before and after school for my youngest daughter who was 7 years old while I attended classes and study at the college library with my tutors.

Transportation:
I had to quit driving in 1994 as I could not longer see signs on the road or hi-way, could not back up and I hit a parked car – just grazed it. I got rides to college as was too afraid to take the bus.
The Mobility specialist trained me to take the bus, and the Para-transit bus. I also had mobility training to walk around campus and neighborhood with my white cane to avoid barriers. They paid for my car rides and Para-transit bus rides to and from the college and pick up my daughter. I used the same service to go to appointments. I had a pass for that from the state for medical appointments. Personal rides I had to cover myself. I hardly went anywhere that was not related to medical or school.

My Major:
My major was for a Microsoft Computer Science Systems Specialist. It is a certificate program comparable to an AS with C++. I took a lot of Computer classes and related classes. I got credit for some of the classes I had previously passed. The Empire college was not accredited college at the time, so I did not get credit for the medical classes I took with them.

I started classes in September 1994 I was 44 years old. 

Equipment:
Every class I had:
my tape recorder, double page NCR paper, a textbook or two, and a hand held magnifying glass and a backpack full of things I needed for each day such as food and water.

A year later I got an assisted listening device so I could hear the teacher better. They had a microphone and I had the receiver with head set.  All but one teacher was happy to assist me with this device.

Tutors/assistants:
I had tutors - [paid for by the Dept of Rehab] who met me in the Library to help me with math and later Algebra. I had to start over with grammar school math and worked my way up to the Algebra class that was required for the certificate. Volunteers in each class took notes for me on the NCR paper. I had some paid assistants for a few semesters.

Training:
I had training in the computer lab to learn how to use the adaptive equipment to assist me on the computer. This consisted of software that did several things. It enlarged the text, it gave audio output via speakers or headset, hardware such as a large track ball mouse, large letters on the keyboard, braille on every thing, padded wrist rests and awesome seating. In the computer lab I was trained on both PC and Mac computers.

All the classrooms had some special tables that could be adjusted for each student to accommodate for height while seated. Teachers were awesome in that they announced every thing they wrote on the board so I could review it on my tape player. I usually talked to the teachers after the first class and told them of my needs. They were all very good with helping me. A lot of the teachers were kind enough to have handouts for me that were already enlarged. Other documents could be enlarged for free at the disabilities center.

Fellow students:
I had friends of all ages who were disabled and belonged to several clubs for disabled students. I was president of one of the clubs on semester which allowed me to go to leadership retreats and have special training and input on council meetings.

Testing:
When it came to testing, I was allowed time and a half to complete all he tests. I could be proctored in a separate room with all the adaptive equipment. Many times the teachers let us use our books to take the tests. Of course pop quizzes were happening without the aid of the books.

After 6 consecutive regular semesters and one summer session, I finished in May of 1997. I got my Microcomputer Systems Specialist Certificate with over 70 units completed with these 7 semesters including the 15 units from previous classes. There was only one class I had to repeat 3 times – DOS Utilities. I finally passed it as a cr/nc class.

My next decision was where was I going to attend blind school and my next college!

The State gifted me:

Monocular, Hot Shot  a water heating appliance, Measuring spoons, Hi-Mark marking puffy paint, Say-when indicator - when your coffee cup was full, folding white cane, long oven mitts, Solar shades sunglasses, talking watch, talking alarm clock, rubber mat to open jars, knife with guard, built up knife fork and spoon covers, and Handi-cassette recorder.

ADA Equipment
The first type of digital magnification device I used was a video camera in your hand. It looks like a mouse and basically is like a web camera hooked up to you computer via serial and now USB port connector.

The next model I used was a large CRT Monitor hooked up via cables to my computer monitor. It was about the size of a medium television. There were adjustments for black and white, color, negative and positive viewing and some colors like amber and cyan.
I used it to read my text books and could see the book on half the screen of my monitor while I could see what computer programs I was learning about at the same time.

These models I used before any of the flat screen monitors were available.
Digital software
JAWS Screen Reading Software by Freedom Scientific, Window-Eyes by GW Micro

If you are running Windows XP or VISTA you already have a screen reader program. It is called Windows Narrator. Same for the Apple MacIntosh computer and their program is called VoiceOver in Depth.


The programs I have used at College and Work 

JAWS Screen Reading Software by Freedom Scientific, Window-Eyes by GW Micro, and Connect Outloud. The last one is not longer being used. Some of the first generation screen readers were DOS based programs with no GUI interface. The user has keyboard commands for all of these screen readers, the first generation only had DOS and no graphics for Low Vision persons.
I got a computer from The Texas Center for the Visually Challenged [Now called Computers for the Blind - see link below] for 100.00 USD. It is an ongoing program for anyone who is blind or visually impaired. I will have a link in the links module. They are a wonderful outfit and has been going on for more than ten years.
Don’t forget to check out the 10 free Screen Reader Programs on the link list.

Facebook Makes Site More Accessible to Blind and Visually Impaired Users

The address is https://m.facebook.com/
You have to have an account with Facebook to get into the website.

System Access to Go

Another program that is really valuable that you can carry around with you on a flash drive and use any computer with it. That program is called System Access to Go by Serotek. A desktop application is just called System Access. free System Access licenses to the K-12 community, lifetime passes to SAMNet to blinded veterans, and SA to Go for blind and visually impaired persons living in developing countries. They have other software programs as well.

Blind and Low vision web sites
In 2011 I got a computer from the Computers for the Blind . I had a telephone interview and there was no application. The computers are guaranteed for a year. I had to get a new power supply for it after 18 months. It was easy for my kids to swap it. It probably is a good idea to have someone inspect your computer once you get it to make sure the power supply is the proper one for that computer. Keep in mind these are used computers and they are components put together. I am still using the computer and it is quite adequate for me as a legally blind person to do my writing and editing and perusing the internet. The NVDA screen reader it comes with works great for documents. It works well with the mobile app for Facebook and reads the words to you. Once you get used to it, it really helps to preserved your residual vision to listen to documents. The phone number for the Texas company is 214-340-6328
Info@computersfortheblind.net

Able data Video Magnifiers
Able Data

10 Free Screen Readers For Blind Or Visually Impaired Users

I am currently using NVDA in my laptop and my PC.
Here is the link:
NVDA

I love NVDA as it works with Facebook!

My friend Olivia has a link for ideas for Gifts for children with special needs:

Christmas Gifts for Children with Special Needs!



The classes I took to get my:
Microsoft Office Systems Specialist Certificate
Required classes to get certificate in 1990's
Class Units I was credited
CIS = Computer Information Systems class
DOS CIS 51.11 _______________3.0
Dos Utilities CIS 51.12A _________cr
Excel CIS 61.31 _______________3.0
Management Infi Sys CIS 66.0 ____3.0
Windows CIS 84.14 ____________1.5
Windows CIS 84.15A ___________1.5
Telecommunication CIS84.41 _____3.0
Web Pages CIS 84.42 A _________1.5
Computer Hardware ELE 299.7 ___1.5
” ” ELE 299.8 _________________1.5
Basic Programming CIS16A _____4.0
Communication 52 _______________1.0
Elem. Algebra math 150A ________3.0
some other CIS classes that I could not find my report card
from Jan to May 1997 when I find them I will add that to this list.

other prerequisites and special lab for disability students
WD process L cis 383 __________1.0
I took this lab class every semester with out credit after the first semester
General Math cskl 371 ___________3.0
Pre-Algebra cskl 372 ____________3.5
I also took a special ed PE class every semester except summer.
My first semester I had 3 other prerequisites for a new student and career development classes.

==========================
FYI current classes for Microcomputer Systems Specialist
Program of Study Code: 003104
Term Effective: SPRING 2004
30.5 Units

Program Description:
The Microcomputer Systems Specialist
Career Certificate program prepares students
for employment in many entry-level jobs
requiring a well-rounded computer education
in windows based microcomputer systems.
Microcomputer Systems Specialist Career Certificate
- complete 30.5 units
CIS 50.13 Virus Protection/Disk Backup
CIS 50.91 Exploring Microsoft Windows
CIS 51.13 Microsoft DOS/Windows Command Line
Basics
CIS 61.31 Using Microsoft Excel
CIS 65.11 Microsoft Word
CIS 66 Management Information Systems
CIS 78.11A Telecommunications 1
ELEC 88.81Computer Hardware
ELEC 88.82 Advanced Computer Hardware/A+
Complete any combination totaling at least 3.0
units from the following:
BGN 71 Business English
BMG 52 Written Communication in Organizations
ENGL 84A Technical Writing
ENGL 100 College Reading and Writing
Complete any combination totaling at least 3.0
units from the following:
CIS 10A Computer Science Fundamentals I
CIS 16A Introduction to Programming with Visual BASIC
Complete any combination totaling at least 3.0
units from the following:
BMG 54 Quantitative Skills/Math
MATH 150A First Half of Elementary Algebra
Any Math course from 150B to 155
Complete any combination totaling at least 3.0
units from the following:
Any other CIS course not appearing in the
certificate requirements.
Other Essential Program Information:
No course may be used more than once to
fulfill a requirement in the certificate.


I am 'legally blind.'

I am 'legally blind'



   Me age 3 with my first pair of glasses

What does that mean and how do you do that??

How do you do that????
A lot of people have asked me that question over the years.
This story is a personal story to give the general seeing public an idea of what it is like to be a legally blind person.

The general term 'blind' applies to all forms of visual impairment. For me I am 'legally blind.'

What does that mean? 

Legally blind means that a person's correctable vision tested with glasses [in one eye or both eyes] is less than 20/200 or 6/60.  Normal vision is usually considered 20/20. 

If some one can see something 200 feet away, a legally blind person can only see it if it is 20 feet away.

For me - I cannot see any thing in focus 20 feet away! I can only see things that are about 2 feet away for large objects and 2 inches for reading a font size 20. 

A 20 Font would look like this in comparison to a normal 10 font.



So I am 20/2000 in my right eye and 20/3000 in my left eye since birth. There is too much scar tissue from the damage at birth for any usable reading vision for my left eye. 

My vision got worse over the years with internal damage to the retina with detachments. I also developed cataracts in the year 2000 which the Dr's feel they should not operate because my eyes are too delicate. Additionally I have been diagnosed with Normal-tension glaucoma in both eyes. I use eye drops nightly for that.  I also have a cracked cornea in my left eye because the eye is too big and will not close all the way. I wear an eye patch at night or when I am sleeping. 

Thoughts that run through my mind

Here are some things that run through my mind every day and/or I want to say them to people…

* I am blind not deaf!
* Yes, I can hear you!
* No, I do not see!
* Talk to me not my guide or companion.
* Yes, I know about guide dogs.
* No thank you! I don’t want a guide dog at this time!
* Let me take your arm, don’t drag me!
* I am not totally blind.

This story is about how I deal with being legally blind and best ways to handle it, addressing many issues such as the list above as well as my daily living skills.
Some skills I picked up by trial and error along the way, others, I learned at Blind school when I was 45. 


How to navigate the bathroom and kitchen

When I was a child I had chores, I remember standing on the wooden milk crate to wash the dishes. I think it took me 2 hours to do the dishes. Not that it was hard to do but that I LOVED to play in the water! YEP! I am a water baby! So I imagine with the dishes soaking for that long they must have gotten clean by themselves. I am sure whatever I did my Mom went back in to check and re-did a lot of things… But I got experience.

As an adult I used to be quite the gourmet cook! I loved to cook! Fortunately I never set the house on fire or cut my fingers off. That came later… No — just kidding… I started to accidentally cut my fingers a lot and did almost burn my Tipi down (yes, I lived in a Tipi for a whole summer)… but again that is a whole other story…

I have lately found some things to help me get by in the kitchen and bathroom. Lots of ideas I have learned from blind school, blind social group meeting interactions and lectures by professionals to our support group.


Bathroom:

Bar soap helps:
I kept dropping the bar of soap so I took some plain washcloths and sewed them on two sides to make a sack with a large needle and sewed those sides shut with some hemp string. I finished it off with a draw string, knotted it at the end. That way I can hang in the shower and it holds the bar of soap very nicely.

Shampoo and conditioner:

One day I forgot to mark the new bottle of conditioner. I accidentally used my daughters face wash instead of conditioner. If the bottles of shampoo or conditioner are the same size I put a wide rubber band on the conditioner. I use a band like the kind that holds a bunch of broccoli. I like the big bottles of shampoo with a pump and squirt nozzle. That helps a lot! I use a conditioner that comes in a tube and I flip the top and squeeze out the amount I need. Having a shower rack helps to organize items as well. But I forgot to mark that new bottle with the rubber band and or ask her for sure which one it was… Oh dear!

Baby wipes:
I love baby wipes! It really helps my skin to stay clean from dust and dribble I get on my chin. I really like the brands with the plastic container. I like the unscented with no alcohol to dry out my skin. I like the ease of they way each cloth pops up to have a new fresh cloth each time I need one.  I purchase my baby wipes by the case from Costco which saves me a lot of money.

Make up:
I quit using make up, but I used to. I would stand so that I was facing a mirror that was hanging on the wall. I could put my fist next to me cheek and guide the eyeliner on. By the time I got to be age 35 I couldn't put mascara on anymore about poking myself in the eye. So that's why I decided to quit. 
I use basic lip gloss or chapstick. Regular lipstick ingredients bother my skin. 

Hair removal:
I have to feel my way with the tweezers for those pesky face hairs… I hate razors…  I quit using real razors when I started to shave pieces in my legs off. I was in my 20's.
After that I used electric razors to shave my legs. 
When couldn't see my legs anymore and I was married my husband's liked me to have smooth legs, so guess who got to use the electric razor?
After I got divorced I went native. I could care less if my legs are hairy when I have shorts or her bathing suit.
I have no idea if any totally blind ladies use real razors!  Good question!


Here are some tips that help me in the Bathroom 

As a legally blind or blind person you need to identify things.
besides brailing labels you can:

1. Put a rubber band on either the shampoo or conditioner to identify that as one or the other if the bottles are similar shape and size.

2. Put your bar soap in a washcloth that is sewn up on 2 sides with a draw string to make a pouch, or a rubber band at the top. This will keep the soap in your hand and off the floor of the time. This makes it easy to hold the soap and washcloth at the same time and you can put the drawstring on your wrist. hi just use the rubber band on mine.

3. Use the "Hi-marks" tactile pen that makes a bump on the container to identify it. You can get tactile pen online. Links at the bottom of this page.

4. You can get clear or colored dots that are raised like Braille called Bump dots. They are made of plastic with an adhesive on the back. I have these bump dots on my laptop, battery chargers, microwave, the dryer and washer and a few other items.

         Bump dots in clear orange and yellow
Kitchen:
Kitchen is over the top for me now. I make a few simple things by hand by assembling things that my daughter prepares for me, or reheat what my daughter cooks during the week for me. She makes soup from scratch and puts them in the freezer in single serving plastic containers. All I have to do is place the frozen container in the refrigerator 2 days before. Then the day I want to use it place the contents in any glass or microwave safe container in the microwave and reheat. I have a colored bump over the start button on the microwave, every time you press it it sets the timer for 30 seconds. I know how long to reheat each item such as broth, water, foods, and almond milk for my tea or hot chocolate. 

Finger guards:
In the past I used the food holder and finger guard. They are sure help me to keep from cutting my my fingers. I used these for whole pickles and apples. Now my daughter chops things for me that need a sharp knife.  We keep the foods in the refrigerator on the top shelf which is dedicated the right side for my things. I have my own cupboard right next to the eye level microwave that is above the stove top. The bottom shelf is stocked with some things i use often.  The rest of my non perishable items are on a shelf in my closet in my bedroom. My medications are there as well. She also sets up my pills in three containers for a week in each container. I have one for A. M. pills, Noon pills and bedtime pills.  Other pills such as tylenol and pain pills I keep on my desk. I have a clipboard with a daily schedule where I check off what I have taken and what I need to do.  That really helps a lot so I do not forget anything. 

Pill container

Pyrex glass:
I can only eat small portions 6 times a day now so I bought a half dozen 2 cup glass Pyrex glass containers. I use red nail polish to mark a bold line on the outside of the glass at the 1 cup, 1 1/2 cup and half cup lines so I know how much I want to add to the glass. Then I microwave the contents.  I also have some other glass containers that I know they hold one ot two cups.  I add the oatmeal, fruit and cinnamon, then add the boiling water to the top of the cup just before it flares. My oatmeal is measured in a baggie, which I can do and is ready to go for each serving. 


2 cup Pyrex type measure cup
Electric Tea Kettle:
I have a glass electric kettle to boil water for my tea and hot chocolate. I really like the kettle that way I do not burn myself on the stove. I use a metal Thermos container to hold my tea. The thermos holds two liters of the tea. I make it weak with just two tea bags each day. I use the 20 oz Rubbermaid reusable plastic container for water with lemon juice and/ or fruit juice mixed with water. Lots of paper towels and napkins are always needed!
That is the extent of the kitchen for me.

Kitchen products I use every day

I use a Sharpie pen in black or dark purple to go over the vertical and horizontal lines on the glass measuring cup to highlight the lines there as they fade with time. I also write a large 1/2, 1 and 2 at the appropriate marks. You can also use the Hi Mark marker and or the bump dots as described above.  My daughter marks the plastic containers also with this pen so we know the date and the content of the things in the freezer. 


I am blind not deaf!

A lot of people shout at me and I cannot figure out why! 
Do you think that I can see better if you shout at me? 
Or Do you think that I am deaf as well as blind or visually impaired???
Most visually impaired persons are not deaf, some are. 
Well truth be told I do have a hearing issue that I cannot distinguish consonants.  Volume will not fix this issue, but having a one on one conversation will help.  I used to use an assisted listening device in college that helped me to hear only the teacher.  

The best way to be blind is to *S*M*I*L*E* and say “Yes, I can hear you fine, now just tell me how or where …..”

The best way to be blind in the twenty first century – the first portion of it anyway, is to be very grateful that there is a plethora of help and assistance available!

The world opened up for me beyond Motherhood and being a wife after I went to blind school as an adult at age 45. For some reason, I was what they called  “mainstreamed” into public schools in my childhood and youth in the 1950's.
By the time I was age 13, I could not read a paperback book or the textbooks for Junior High School as the print was too small. My grades began to fall and I stared to become depressed. It is a wonder I made it through to graduate high school. I am positive it said in my portfolio for High School I was a certifiable idiot… LOL!!!

I tried to go to college out of High School but I was either getting an A or an F for the same reasons!
So after 4 college tries over the next 20 years I gave up and enjoyed life as a wife and Mother of 4 wonderful children who are all now adults.
I had jobs such as sales associate and cashier, and child care and food prep in a convalescent hospital.  Most jobs ended because I could not see well enough and I was afraid to tell them I was legally blind.  I had no idea how to advocate for myself or find a job that I could stick with and have a visual impairment. There was no adaptive equipment then.

Yes, I can hear you!
Well this is not so true anymore. However when I was a child I did not have as much of a problem with hearing. By the time I was a teen I could not hear the words and music [isn't that a movie??] at the same time. So if they had bad Lyrics when I listened to hard rock etc, I never heard them!
My teenage daughter was listening to “Cinderella” the rock group in the 90′s and I said that’s nice! I thought she was listening to the Disney Cinderella! LOL!!! Same thing with the music group the Dead Kennedy’s… LOL!!! I could not hear the bad language or any of the words…

Thankfully, now there are some awesome head phones and smart phones that I CAN hear the words better now! Yay! I don’t know but I think it is some kind of deficit that I have hard time with consonants… I don’t know the medical term for it…
So with awesome headsets and awesome smart phones I CAN hear and that is one more way…
Best way to be blind… and part deaf…


No, I don't see!

When I was a child and even to this day I cannot see the chalkboard, write board or any board that is more that 6 inches away!
I cannot even read the Highway signs… I had to quit driving when I hit a parked car in 1992…  I stopped driving in 1994.  I had to get rides or take the bus, train or Paratransit when I became wheelchair bound. 

So anyway back to school… and the chalk board…. Uggh chalk dust was bad for my allergies…. I had a rough time with that… So what did I do???
Best way to be blind when you need to know what is on the board???? You listen very carefully and “learn by rote”…. I had to memorize a lot of things… Bad news today. Now that I am in the ‘Senior" Zone I had a harder and harder time with memorization to retain that memory! 
So I do not know how I did it, but I did…

When I went back to college when I was 43 they had just started the Americans with Disability Act bill or ADA. I had taken class in the 1970's and 1980's  at college here and there and there was NO ADA… I flunked out of 4 colleges because I did not have adaptive equipment, not even a magnifying glass. 

Thankfully I met a woman who told me about the ADA and college where she worked. She referred me to the Department of Rehabilitation in California. 
So I am here today because I learned to see a whole new way to learn!
It helped that the Professors and teachers were kind enough to wear a microphone and me wearing a personal receiver from the assisted listening device. Having the teachers say exactly what was on the board instead of “See how this goes here and that moves here” etc…..
Praise the Lord for ADA!

Daily Living Skills: Clothes:
Dressing and matching colors is a real problem for me.  While I am not color blind, I am missing some of the rods and cones in my eyes that help identify colors.  Shades of red and the most difficult followed by shades of green and blue.  
Thankfully my daughter helps me with that now! But you can place your shirts over your skirts that match on the hangers in advance. There are little metal tags and plastic buttons that are different shapes and colors you can buy to sew in the hems of the clothes that let you know what basic color they are. It helps to have the sales person or friend match up the correct color when you shop. Bring along that skirt when you are looking for a new top to match it. I usually wear black pants and black skirt so most of the tops will match the pants or skirt.  Now my daughters help me match the colors. 
One time I went to an interview in the Department of Rehabilitation services for the blind and I wore a  blue shirt and dark brown pants.  It was casual wear.  I got chastised because one: the clothes did not match and two: they said I was supposed to show up as dressed for a mock interview. 


Wash clothes:
When I did wash my clothes I had marked a few places with red nail polish or used bump dots on the machines so I could tell where to set the dials with the dots that I could feel and or see with the red nail polish. Bump dots are clear silicone dots you place over any where to mark certain spots. There are colored dots as well that I use. 
Now my daughter does the wash and dry. I can wash some things out by hand in the sink. The reason is that I cannot bend over to get the clothes out of the dryer or cannot reach the bottom of the washer to get the clothes.  My daughters or caregivers have placed the clothes in the basket on my bed and I will sort the clothes in piles folded or the ones that need to hang up.  I put the dress clothes in the closet and the casual clothes in the dresser. I have had caregivers since 2004. 

How to take the bus, taxi and fly being blind
Equipment needed for travel across the street, across town across a few states…
I had the good fortune to use a power wheel chair from 2001 until 2011. One year it was in storage. So I have used it for 9 years. It finally bit the dust. Now I use a manual wheelchair, or sometimes a walker called a Rollator Walker. It has a seat and wheels and brakes. I have a standard walker as well as 4 kinds of canes. Blind canes and standard support canes which I use all at different times as needed when I am out alone or with some one. My daughter that I live with now cannot push me in the wheel chair as she has issues with her back and shoulders. My son in law does the pushing now when I need to use the wheelchair out side. I can walk if it is not too long. Mostly I prefer to sit int he wheelchair as it is more comfortable than the pews at church or the folding chairs. 

Why backpacks:
When I went out I had to pack like I was going on a trip even just to the grocery store. I have gotten stuck in traffic many times on the Paratransit bus.
I needed my hands to work the power wheelchair control and or hold my cane and have one free hand. So backpacks are the best to use to store all you items. 

Additional reasons:

Reason one: One time the lift on the paratransit bus did not work so I could not get off the bus with my power wheelchair. I had to ride the bus back to the bus barn where they had to put me on a cold bus while it warmed up. It was less than 30 degrees outside. They had to manually crank open the lift and get my power wheelchair out of the bus and put it on the cold bus where I was waiting. I did not have warm enough coat, hat scarf or gloves,  no food or water.  The temperature was freezing cold and snowing. It was 3 hours before I got home.

Reason two:
Before I needed to use the power wheelchair and used the city bus.
I was waiting in the dark for my bus after work. The bus driver drove right past me and I had to wait 30 minutes in the snow for the next bus in the snow. The second bus drove right past me and stopped a block past so he could take his end of line break. I had to walk down a block to where the bus was. It was a block where I had not had blind mobility training.
What little vision I do have is not much help in the dark. Fortunately I made it to the bus. He claimed he did not see me and that he was not suppose to stop where I was anyway. I did not have proper hat and gloves to wait in the cold and snow for 40 minutes. Thankfully I did have snow boots. After that I asked my boss to change my working hours. I got to go to work an hour earlier and leave at 4 pm when it was still light.

Cover all contingencies!

So I made a list of things that I like to have with me and cover all contingencies. Another reason I pack like a trip is: My sister in law was stuck in a small room in her office suite for several hours when the door jammed shut in the 1989 Loma Prieta Earthquake California 1989. She did not even have her purse with her. Since those things happened to me and her, I make advance preparations. I have food and water in my purse as well as my backpack. I keep my purse within reach at all times. 

I have three types of packs that I have and use for different occasions:
1] shopping pack
2] church and visits pack
3] work pack

All packs have the same basic items which I keep in a separate gallon ‘Ziploc’ bag I call the basic pack.

A. Basic pack: [my purse]
Mini flashlight, mini brush, some elastic hair ties for longer hair, my special sunglasses, extra batteries for all my electronics, a pen, paper, and paper clip [you would not believe what you can do with that!] some strong string, space blanket, small first aid kit, current medications for the day [more depending upon how far and long I plan to be gone] gum, mints, one set of earrings, chap stick type, small lotion, and small 10 pack of baby wipes. My wallet with cash in small bills and quarters [1's and 5's] and one blank check. Some places do not take ATM cards. 
The first aid kit, space blanket, string and some of the other items I keep in a smaller bag on the back of my power wheelchair.  We keep the firstaid kit and our emergency preparedness supplies for each family member ready by the back door if we need to bug out. There are additional supplies in the car. 

To that I add other things for each 3 separate pack listed above.

1] shopping/mini visit pack
I always carry water and food. I always put a protein snack and some dry fruit and crackers. I like the soft protein bars. 
I use the Rubbermaid 20 oz reusable water containers with a loop handle to hang on my back pack, purse or what ever.
That usually will hold me over for a couple of hours.  If I rush out of the house with out a meal then I will take a mini meal with me to eat on the go. It is best to eat before you go out especially shopping that way you will not be tempted to want to get a dough-nut that you probably should not be eating! I do not drive so I have this pack on my wheel chair or if some one else drives me it’s in my purse or mini back pack.  

2] church or visits lasting longer than 4 hours pack:
I will add extra bottle of water and 2 mini meals like in the basic pack. I add an extra sweater to that in colder weather, plus gloves, scarf and make sure I have good walking shoes. I cannot walk very far, but you never know what you will have to walk through in case of an emergency. In hot weather, I bring extra undies. If I was using feminine products I would add that as well. 
Add what ever items you normally use every day. But keep it down to survival mode.

3] Work pack [or gone all day]
To the above 2 packs I add whatever items I have to have for my job or school or whatever activity I am doing. Most of the time I brought my lunch with me. I also had several pkgs of dry instant soup, hot chocolate, and instant mashed potatoes. These foods can be reconstituted with warm water from any sink, of course best with boiled water.  Most of the jobs I had had a kitchen with a microwave where I could heat up foods and that is what I did.  Some jobs had a cafe where you could buy good foods. I would do that a couple of times a week. 

I had a co-worker ask me why I had so many bags. I told him since I had to be on the bus some times for 2 hours a day plus the 8 hour work day, and what had happened to me in the snow that one night, I wanted to make sure I was covered for all my needs. He never used the bus and always was driven or had his own car. He was very surprised why I had to take so many things with me.

Long term trips using the airplane

Of course I pack like every one else and again on my carry on I always have one set of clothes. Thank goodness I have never had my luggage lost of delayed. They did loose my manual wheelchair one time, story below.  I don’t like to live in the same set clothes for 2 days strait, [Ha!] so I like to have that extra set of clothes. I have the basic pack and the four hour pack. I extend that to add how many hours I am to be on the plane and travel time to and from my destination.

Usually I have 3 mini meals. I was diabetic and no longer have to use insulin or take any pills. However, I have to eat some protein and good foods every 3 to 4 hours to maintain my blood sugar. Gratefully I do not have to have insulin anymore, however if I did, I would make sure I had those supplies also.
There is No charge on the plane for wheelchairs, canes, walkers, CPAP machines, oxygen etc. You just have to let them know if you have oxygen.
The airport staff are great in helping me with my bags and equipment. I always add my name to the list as needing assistance. They will roll you in a wheelchair if you do not have one so you do not have to walk. Not that you cannot walk, but getting in and out of a busy airport is best by having this method of travel in the buildings.
The last time I flew they left my personal manual wheelchair at the airport.  I had a meltdown when I got to my first stop where I had to wait for the connecting flight.  I was on the phone and texting my two daughters as to what to do about it. The airport placed me in a transport wheelchair which was horribly uncomfortable. I ended up sitting in the waiting area chair until I got help. Finally, my manual wheelchair was flown to me and delivered to my home by midnight. The original agent tagged the chair wrong. They did say they were sorry. 

Basic survival packing The idea is to pack what every essential items you need for survival for the amount of travel time to and from your destination. Basic food and water are on the top of the list. Followed by clothing and shoes. I have dry skin and it is not always easy to find the specific lotions I need I so use the travel kit that is allowed in your carry on bag. Anything like at that which is specific to your individual needs, where you cannot find that an any corner store would be essential to carry with you always. The rest is fluff except medication.

Since they are still deciding if we can carry a small Swiss army knife [as of 2014] that is where the “Paper clip” comes in. It makes a good pokey thing to open those pesky plastic food bags like nuts on the plane! You can use it to clean your fingernails, and after wiping it with a baby wipe you can get a nut stuck in that space in your teeth out. I loved my Swiss army knife as it had a toothpick, tweezers and scissors! No need for the paper clip, but good to have for those reasons! I used to carry it with me always and it came in handy a lot.

So there you have it – traveling blind. I even have a folding cane in my backpack for emergencies. See below about What to pack for Emergency Preparedness.

Paper clip and 
72 hour kit - Emergency Preparedness




Emergency Preparedness
That link will lead you to a great webpage with lots of information. 
A photo/chart that pretty much has the basic list of what each family member needs for 72 hours. 

Why 72 hours??? 

Aside from disasters such as Katrina and Monster Storm Sandy, FEMA has stated it takes an average of 72 hours to get to any place in the USA with full supplies to help people. Have a kit for every one in your car, or place it in the garage to grab to go. 

I purchase quite a lot of items from Emergency Essentials They have just about anything you need for an Emergency situation when you do not have food, water, or power.


Links of agencies for services I received - medical description of my eye disease


Retinopathy of Prematurity eye disease
Retinopathy of Prematurity eye disease is the eye disease I have, detailed explanation of causes.

California Council of the Blind
California Council of the Blind (CCB) support group for the blind

American Council of the Blind
American Council of the Blind support group for the blind and visually impaired persons

Lions Clubs International
Lions Clubs International support and education fund raising and grants

LightHouse for the Blind and Visually Impaired
LightHouse for the Blind and Visually Impaired

National Federation of the Blind
National Federation of the Blind - detailed website support for the blind and visually impaired persons

Medicine and terminology and eye disease discussion
eye disease descriptions


I have more stories that are forthcoming that describe my school life before and after ADA help.  Coming Soon! 

I am open to answering any question you should have. If you have a link that you wish to have me advertise I will be glad to add it to my sidebar.