Why Boosters Matter

22 12 2021

Why is the COVID-19 booster SO important?

I’ve been participating in a study with University of Texas who are studying antibodies. When I got the results to my first blood draw my antibody level was 512. Low end of the range is 0.8 and the high end of the range is 2500. If one was looking to have an antibody level at its best, you need to be closer to 2500.

Once I got this level back I went and got my booster on Sep 23.

I just had my blood drawn last week for blood draw #2 (week of Dec 12-18). They are following me over a 6– to 8-month period of time. I’ll be getting another one in a few months from now. My antibody level came back as OVER 2500. Not too bad after almost 3 months since my booster. I feel really confident now going out continuing—as I always have—wearing my mask in public and washing my hands for at least 20 seconds (which I hardly see anyone in a public restroom doing anymore). Of course, everyone will have a different result but for someone who takes immunosuppressants for lupus this is so wonderful for me.

I’m SUPER ANTIBODY WOMAN. Roar!!! 😂😂😂





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Overcoming Fear: The COVID-19 Vaccine

27 01 2021

Some of you know my family and some don’t.  To summarize, my son developed a brain injury from vaccines as an infant.  He carries a diagnosis of encephalopathy (among many others) which was given to him by his mainstream Texas Children’s Hospital pediatrician.  He has a medical waiver for all future vaccines.  I want to make it VERY CLEAR: I am NOT an anti-vaccine person.


I have multiple complex medical diagnoses, but if you read my blog from the spring, you know that I have lupus.  I have a history of exaggerated responses to vaccines; the last one I got was a tetanus injection at least two decades ago.  It was a very bad reaction and I was not going to put myself through that ever again.  My husband is extremely healthy. 

Like the rest of the world, I have been waiting to see what the COVID-19 vaccines would be, what would they look like, how would trial volunteers tolerate them, and what EXACTLY (and I mean EXACTLY) was in them.  My go/no-go on the vaccine was going to be based on all those things.  I am hoping that my experience will help you make the decision for yourself.

Now older, my son lives in a group home setting with two other young men who, without compromising their primary diagnoses, have things that would put them at high-risk.  The group home agency has taken many precautions to not let COVID-19 reach their homes.  I don’t know exactly their success rate, but I do know it has not reached my son’s house.  We are careful ourselves because of my own diagnoses.  My husband has been working from home since March.  We have no family who lives here in our area except for my son.  We have not visited with friends.  I have a job that allows me to work outside for the most part and that is not even very often.  We go through the drive-through at the pharmacy to pick up things unless we absolutely have to go into a store.  We wear masks.  We do curbside pick up for our groceries.  We socially distance unless there is some odd circumstance where we can’t (rare).  If I am in a store and someone walks in without a mask on, I leave (and I don’t care if I’ve been there 15 minutes already and am almost finished).  You get the picture.  We are exceedingly careful, but COVID-19 seems to be closing in and affecting more and more people we know (but haven’t seen). 

I read the ingredient list of the Moderna vaccine. After looking thoroughly at all the “additional ingredients” in the vaccine, I felt comfortable for my son to get it. 

About 4 weeks ago, we were told that the group home agency, since it was considered by the state as being similar to what a nursing home would be, was going to be vaccinating anyone who wanted to be.  It was the Pfizer vaccine.  I had been a bit perturbed with Pfizer because they were refusing to release an ingredient list for them which made me suspicious of them immediately.  Moderna had full, open disclosure so that gave it one notch in the “trust” column.  Then I found a breakdown of it on the MIT website.  In the December 9, 2020 article, it broke it all down.  It contained mRNA; lipids (which is the same vehicle used by Moderna); salts (potassium chloride, monobasic potassium phosphate, sodium chloride and basic sodium phosphate dihydrate); and the only “other” ingredient was sucrose. 

We decided to sign him up.  We would bring him home with us that weekend so we could CLOSELY observe him. 

Two days prior to him receiving it, we got an unexpected surprise.  We would also be allowed to get the vaccine.  It became a matter of dosing with the vials so that none of it was wasted.  We filled out all the appropriate paperwork.  I contacted my rheumatologist to weigh the pros and cons for myself; he said succinctly: 

Whatever your reaction is, it would be less life-threatening than if you got COVID infection. “

The Day of Injection

I was having a mini-panic attack about doing this.  We met our son at the site.  The pharmacist spent a LOT of time with us, especially with Patrick’s and my medical histories.  You could tell the pharmacist was nervous about all this, too, but isn’t that what they were expecting?  They were vaccinating people with disabilities.  The pharmacists were rattled by one person in the room who clearly had Tourette’s.  I heard a comment under the pharmacist’s breath about him needing to be quiet.  The young man’s vocalizations made him jump where he was sitting. I tried to explain to him that it was part of the young man’s disability; it wasn’t anything he was doing deliberately and he just can’t “be quiet.”  I tried to be nice about it; after all, he WAS about to put a needle in MY arm.    We had numbed Patrick’s upper arm so he wouldn’t feel it going in.  I numbed mine, too (I’ve developed a needle phobia over the years after all the poking and prodding).  He asked for Patrick to wait with us for about 20 minutes more–which would be 40 minutes in total as the pharmacist had spent 20 minutes with me just getting my history and understand my complex medical issues).  He wanted me to wait about 20-25 minutes, too.  The pharmacist told us to rub the injection site for about 30 seconds twice a day for a few days. 

Patrick didn’t even move.  Jeff is a pro at getting vaccines so it was no problem for him.  I did feel it go in a little (but it wasn’t as painful as a needle for blood work).  The vaccine itself was mildly burning; I imagine that might be the “salts” in it. We were all fine and Patrick hopped back in the van to go back to his group home; we planned to get him later that evening and keep him through the weekend to monitor him. 

I happen to have “princess and the pea” syndrome.  What is that, you say?  It’s not an official medical syndrome but it is the fairy-tail story of a princess who was able to feel a pea that was on bottom under 100 mattresses.  I’m the person who would feel the pea.  It’s important info for some of these observations I am about to share:

Before we left the parking lot (so about 40 minutes after the injection) I told my husband I could feel something different going on inside.  I also felt, for lack of a better word, like a space cadet.  Then a few minutes later I told him my mouth got super dry (maybe lasted maybe 20 minutes).  We had to stop to pick something up before going home.  When we got back to the car, I said, “I know what this weird feeling is—I’m exhausted.”  My husband agreed he was starting to feel that, too.  About two hours later the tiredness got worse (like “I need a nap” level).  I noticed my spine in the cervical area up into my head was throbbing (this is also where my pseudotumor cerebri headache emanates from so I don’t know if the vaccine had some effect on that; this particular disease is only 1 in every 200,000 people and common in people with lupus).  We both took naps.  My husband noticed for him that his eyes got oddly dry (versus me with my mouth getting dry) in a different way than he usually experienced.

Subsequent Days

The next day (Saturday) my husband had no symptoms at all—not even a sore arm.  My son didn’t appear to be hurting or to be tired in any way; he is nonverbal and doesn’t understand if I ask him “where does it hurt.” He cannot even answer that question with pointing to where it might hurt. I was still exhausted enough to need to stay in bed most of the day and slept.  About two-thirds of my upper arm was hurting (both moving and not moving it).  My headache had now changed to involving my entire head, slightly throbbing.  Later that night, though, I felt like I was going to pass out.  My blood pressure was crazy low.  I took it both sitting and standing.  Sitting it was 104/71 with a pulse of 62 and when I stood up it was 69/42 with a pulse of 69.  I took it twice to be sure about 15 minutes apart.   Not sure what to make of that.

On Sunday, my arm was better.  I was still having some weird blood pressures and I still had that bad headache but I was less exhausted.  I did stay in bed again most of the day but didn’t sleep as much.

On Monday, I was less tired and as the week continues to progress (it now being Wednesday) that has improved a great deal to where I’m back to normal.  However, this headache remains.  I’m hoping this will improve soon, too.  

I hear the second dose is supposed to be the one where you might get a fever and some other kind of symptoms.  I will report back. 

This was, by far, the best vaccine I’ve ever received.  I’ll let you all know how the second dose goes.

February 12, 2021 Second Dose Update:

My husband wound up having the usual reaction to the second injection. He was tired and on day two he had chills and fever. My previously vaccine-injured son still had no reaction that we could determine. Surprisingly, my reaction was better than the first injection. When I shared with the CVS Health professional what my reaction to the first one was, she said, “Well maybe this second injection will not be like that.” And she was right. I had a much better experience. I was only tired for 2 days, in bed for one full day from the exhaustion, but up and about on day 2, but just taking it easy. I did have a headache that lingered a day or so more, but I’ll take it.





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A Tribute to Special People in My Life

24 01 2017

Today is the anniversary of the death of someone I cared about deeply. I had intended to write this last year, but then my life went into crazy mode. As time moved on, it seemed weird to write a post that wasn’t connected to a significant date. In December, his wife passed away, joining her husband in heaven. I wanted to write the post then, but it was the holidays and life was in crazy mode. Today was the day. I wanted to honor Wayne and Garnith and what they and their family have meant to me. In doing this, however, I am going to have to share some deeply personal things.

Some know the story and some do not. I was born in Brooklyn, but after 5 years, my family moved to Hillside, New Jersey. My parents divorced a few years later. My mother got pregnant and then married a second man. When she discovered he was a polygamist, she had him arrested and but was only able to convince one of the wives to come testify. He was found guilty of bigamy. As he was being carted off to prison from the courtroom he said that he was going to kill us. I don’t know why my mother decided that Omaha was the safest place to hide; it would be the first place he would have looked because her sister and her family lived there. But we pulled up stakes and moved to Omaha.

Sometime in my 5th grade year (the entry grade level in Omaha), I met someone new to our class. Her name was Kelly. She lived in the townhome complex we did. She was very quiet and shy (boy was that just a cover!) She had an older sister (one grade level up) named Kitchel.

Fifth grade class; Kelly is standing in the first row, 2nd from the left in the dark shirt.

Fifth grade class; Kelly is standing in the first row, 2nd from the left in the dark shirt.

Once friends, I got to meet Kelly’s parents, Wayne and Garnith. I remember my first impressions were they were so YOUNG and hip and cool. Garnith had gotten pregnant with Kitchel when she was 16. Wayne and Garnith got married then. Can you imagine getting married at 16 years of age? One would say the marriage was doomed…but it wasn’t. They listened to the music I like; I hated the music my mother liked.

Garnith

Garnith

I found myself staying over there more and more. Sometimes I would hang out with Kelly more, but then if Kitchel was doing something I was interested in, I might hang out with her more. There wasn’t much age difference between the two and it wasn’t ever because I was upset with one.

Their home became a refuge to escape the abuse going on in my home. They weren’t perfect. They lost their temper on occasion. Sometimes Kitchel or Kelly got grounded. They became a role model for me of people who loved their children, witnessing it up close and personal how that dynamic worked.

I was introduced to new things there. Butter — glorious butter — and that it didn’t need refrigeration (we were eating margarine at home). Refried beans. I didn’t even know what that was until I met them. I loved being able to stay over and eat dinner with them because the food was so much better. Likely I invited myself on many occasions. Garnith was the one who pierced my ears. She worked in a medical clinic. She numbed my ear lobe with ice cubes and then inserted an IV needle in my ear lobes. She was there to brush my tears away when my mother lost control at home. She listened to things that came my heart. She gave me advice when I asked for it. She became like a mother to me. More and more I wanted to stay at their house and not mine.

My father was pretty absent in my life. He was an alcoholic and child abuser. Once we moved to Omaha he couldn’t even sit down and write a letter to me. Wayne became my fatherly role model. He was a quiet one (his wife the complete opposite). He was funny. He loved football. He gave me advice as well. He became like a father to me.

Wayne

Wayne

One year they asked me if I wanted to come with them on a family road trip to Wichita. I was shocked my mother said yes. I got to experience what that was like. I met their extended family. I wanted to be adopted by them. I had hoped maybe with my absence it would make my mother’s heart grow fonder, but that never happened.

Dancing in Blue Springs, MO

Dancing in Blue Springs, MO

When they moved from the townhomes into a house (but still in the same school district) it became a bit more difficult to see them.

Meanwhile at home a storm was brewing. My sister and my mother got into a fight. She told my sister to leave. I stuck up for my sister. My mother was lying saying my sister said one thing when I had been a witness and that was not what she said. My mother told me I could go with her. At age 14, I boarded, along with my sister, a bus bound for New York (a very scary trip). My sister moved in with her friend’s family Toms River (having known them from Hillside). I went to my aunt’s house (and that is another story). My mother apologized and told me for the first time in at least a decade that she loved me. I decided to go home and give it another try.

Kelly & Kitchel in Houston

Kelly & Kitchel

Things just got worse. By July, she told me she was buying me a one-way ticket to my father (a father who was living under a bridge). She never wanted to see me again and I would never see my brother again. She told me I could only take the things with me that I had bought for myself with babysitting money. I called a friend and they picked me up. I was able to stay with them until my flight left.

My sister had me stay in the Bronx with her and the family of her college friend (where she was staying). It was for several weeks. We went up to see my father’s side of the family and my Aunt Pat and Uncle Paul said I could live with them, but I didn’t know them then. I wanted to go live with the Williams’ family. They told me if I ever needed anything to call when they moved to Missouri the same week of the first episode of being thrown out. She told me they would have a family meeting and let me know. They took a few days. The answer was yes.

The Williams extended family

The Williams extended family

What I learned later was that my father promised to send them money to help with the expense of raising me. I was having a lot of illnesses, bronchitis, and what not and I wasn’t eligible really to be on their insurance. In retrospect I am not really sure how they even got me registered to get into school because they weren’t my guardians and my father did not have the legal right to give them that. There was also a lot of fighting going on between Kelly and myself (and really I don’t even remember what that was about). Finally Garnith brought me in to her bedroom and said that they really couldn’t do this anymore. That she loved me so much. My sister was going to file child abandonment charges against my mother and she was getting me a ticket to New York so I could be placed in a foster home close to SUNY Stony Brook where my sister was a student. My heart was so sad but at least there was a plan.

In the meantime, I wrote my grandmother. I guess somehow my mother saw it, knew where I was and called their house. I will never forget when Garnith sat there and told my mother off. Someone for the first time in their life stuck up for me. Not even the teachers at my school stuck up for me when I shared with them about the abuse going on at home. It was a different time and my mother was a masterful liar.  I told Garnith how much I loved her for doing that, but I needed to be gone tomorrow. I knew my mother. My mother was going to send the police and she would technically be “harboring a runaway” (even though I wasn’t a runaway–this is the way my mother twisted things). Just to be safe, even though the plane I was going to be flying on was going to just stopover in Chicago and go on to New York, we decided to have me switch airlines and then continue on to New York. Remember I was 14 and I was going to do this alone.

I had a nice talk with Kitchel before I left (see picture below). That was the last picture I took before I left them. Wayne drove me to the airport and I enjoyed the time we spent together talking about things. Later I found out at that very moment, the police showed up on their door. Kitchel was home and invited them in and said, “She’s not here.”

Last picture I took before leaving

Last picture I took before leaving

I got stuck in Chicago because of a blizzard and I had zero money on me. I was so hungry. The flight was cancelled. My sister, who was meeting me at the other end, went home to her friend’s house. Around midnight though, they let the plane go to New York. The stewardess was more than happy to give me a second dinner when I explained my situation.

When I arrived in New York, no one was there to greet me because they all thought my flight was cancelled until the next day. Without the benefit of cell phones and having no money to make a phone call, I tried to reach my sisters. Eventually we did connect and I was informed about the visit by the police to the Williams’ home.  My sister added that the police may be looking for me and keep low. Here I was — 14 years of age — its about 3 o’clock in the morning–and I’m wanted by the police!  It wasn’t like there were any crowds to blend in.  I sat in the baggage claim area and just waited with confidence like there was nothing wrong.

I kept in touch with the Williams family through letters and phone calls. As adults, Kitchel wound up in Houston and we spent a lot of time together. I believe (I could be wrong) that they moved away, but then were moving back. Kitchel got to stay with us at the house we now own for I think it was a month until she could find the right house. She stayed in what is now Patrick’s room. I felt privileged to be able to help her as her family helped me.

Comparing pregnancy bellies at I think 16 weeks (in The Woodlands).

Comparing pregnancy bellies at I think 16 weeks (in The Woodlands).

Having her here in Houston afforded many benefits as her family would come to visit. They also had family in a town about 2 hours from me. When Garnith would introduce me, she would tell people I was her “other daughter.” Kitchel and I had children within 3 weeks of each other. Her daughter and Patrick got to be around each other for several years before they decided they wanted to go home to Missouri. That day was a sad day because I felt my sister was leaving and I did not know when I would see her again.

Kitchel and me with our husbands and babies.

Kitchel and me with our husbands and babies.

I know they knew how much they meant to me. The pain of their deaths I felt bitterly. They saved my life. They provided normalcy in a life that was so upside-down it wasn’t funny. I am certain that they helped me have a different life as an adult and not repeat the mistakes and patterns of my mother and father. Garnith’s laughter rings in my ears daily.

The picture was snapped and we knew that it likely wasn't a good picture (days before digital cameras existed).

The picture was snapped and we knew that it likely wasn’t a good picture (days before digital cameras existed).

So Garnith suggested they all do a photo where everyone was laughing.

So Garnith suggested they all do a photo where everyone was laughing.

This family risked a lot to help someone they saw desperately needed it. They made a difference. They are loved and they are missed. They are my heroes.

Forever in my heart.

Forever in my heart.





The Event and the Aftermath: My assault story

15 10 2016

This week rocked my emotional core.  Donald Trump bragged about assaulting women.  Then on Monday, women started speaking up.  I haven’t done this much crying for an entire week for a very long time. 

I promise I was not sexually assaulted by Trump but I admire these brave women coming forth to accuse a very powerful man.  They aren’t seeking to be paid.  They aren’t seeking to file a lawsuit against the man.  They do, however, want to be sure their story is heard especially when they sat and listened to Trump say directly to Anderson Cooper that “no” he had not ever done such a thing on the night of the second Presidential Debate.  have done a lot of crying this week.  I cried at Michelle Obama’s speech.  I cried last night when I heard Mindy McGillivray was having to leave the country for her and her family’s safety after speaking out. 

Whatever is happening within the political campaigns, there is some good that may come from this.  People are finally talking about sexual assault and harassment.  RAINN says that every 109 seconds, an American is sexually assaulted.  Every 8 minutes, that victim is a child. Meanwhile, only 6 out of every 1,000 perpetrators will end up in prison.  I wondered what those statistics would be if all the women who had been assaulted but never reported it finally were included. 

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When doing research so I could get the exact terminology correct, per the RAINN website, “Sexual assault is a crime of power and control. The term sexual assault refers to sexual contact or behavior that occurs without explicit consent of the victim. Some forms of sexual assault include:  Penetration of the victim’s body, also known as rape; attempted rape; forcing a victim to perform sexual acts, such as oral sex or penetrating the perpetrator’s body, fondling or unwanted sexual touching.  Rape is a form of sexual assault, but not all sexual assault is rape. The term rape is often used as a legal definition to specifically include sexual penetration without consent. For its Uniform Crime Reports, the FBI defines rape as “penetration, no matter how slight, of the vagina or anus with any body part or object, or oral penetration by a sex organ of another person, without the consent of the victim.”

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For more than 30 years I considered myself a victim of sexual assault as there was no penetration of his penis.  But there were his hands in what they said above in the description.  Today, after 30 years, I now found out I was a rape victim.  And I cried some more.     

All these reports coming out about Trump has sickened me because I know they are true.  The Trump campaign said that if these things truly happened that the women would have come forward sooner.  Their feeling is that they are too suspicious this close to the election.  What these people do not understand, because they have not been through it, is when a woman does not report it, they try to put it out of their minds and move on with their life.  If these allegations are true for any of them, whenever they see Donald Trump in the news or on TV, they might turn off the news, they might become nauseated, they might experience PTSD symptoms.  But when Anderson Cooper pressed Donald Trump on the matter to get a definitive yes or no answer at the second Presidential Debate, he gave an emphatic “no.”  That was all these women needed.  His “no” was their last straw. 

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Not many people know my story.  I decided to make my story public.  Maybe if I share and make it public, some of my PTSD symptoms will abate.  Maybe it will give someone else the courage to speak up.  There is strength in numbers. 

In 1990 (or was it 1989?), my friend came to visit.  We went out to a club on Richmond Avenue (the name of which I cannot remember).  I do not drink as I am allergic to alcohol so I make the perfect designated driver.  My friend is model-level beautiful and all these men were coming up asking her to dance.  One man came over and I just assumed he was interested in her.  He made it clear he was interested in having a conversation with me.  While my friend was enjoying dancing, I talked with this man.  He seemed nice but was very intoxicated. 

I was ready to go but my friend wanted to stay a bit.  The man was talking about leaving, too.  I said, “You are planning to drive home?”  And he said, “Yes.”  Ironically I just gave her the lecture about being safe, especially since she was from out of town.  If she decided to go home with someone, she needed to call me and give me the address where she was, the name of the person, the phone number.  I told her this guy lived at Westheimer which on my way to my apartment.  I had sized him up as harmless and invoking the “Good Samaritan” rule, I didn’t want him on the roads driving drunk and killing someone.  If I read that something like that happened in the news the next day I would have felt I contributed to that by not providing a ride to this individual. 

He was so intoxicated he could not stand up and needed help even getting to his apartment.  When we got to his apartment and got inside, he collapsed into a chair and to the best of my knowledge at the time was completely passed out.  I used the restroom. When I opened the door and stepped out, my 2-3 hours of terror began. 

He charged at me and knocked me to the bed (it was a studio apartment so his bed was in his living room across from the bathroom.  He landed in such a way that he had me pinned down totally.  His weight was completely on top of me and his hands were around my throat.  I was being choked.  I can’t describe it.  It seemed like such a long period of time but I said, “Oh my God, this is how I end.  I’m about to become a statistic.”  I tried my best to look around to the extent of my peripheral vision allowed without turning my head to try to remember all the things I could just in case I got out of there so I could tell the police.  When I looked to my left, I saw a knife.  I felt myself slipping away and feeling like I was floating.  Then I said to myself, “He’s going to stab me; please let me be unconscious when that happens.”  I had already surrendered myself to the fact I was going to die. 

His weight shifted.  Tears were running down my face and the compression on my throat lessened.  I managed to whisper, “I can’t breathe.”  And he said, “Oh” and moved off me.  I didn’t understand what was happening but I got myself upright immediately.  I said, “Hey, well, I really need to get home.”  He went insane.  He grabbed me and slammed me up against the wall.  I tried to say things to see what words would get him to stop and calm down.  It was a trial-and-error approach and when I thought certain phrases calmed him down, if I continued down that same line with additional comments I thought would continue to soothe him, I blundered and faced his ire.  During this period of trial and error, he was viciously groping me and there was penetration by his hands.  I assumed until today that because his penis did not touch my vagina or mouth, I wasn’t raped, just assaulted.

I was terrorized like this for the next two or so hours.  And I just kept repeating whatever he needed to hear to get me the hell out of there.  “It’s not you; it’s me.  I just thought I was bringing you home.  I have to get up very early for work in the morning and I can’t lose my job.  I’ll give you my number and you can call me and we’ll go out on a proper date.”  Or other such things.  Of course I had no intention of giving him my phone number.  But it was an inch-by-inch journey down to my car.

My first goal was getting out of the apartment.  The apartment complex he lived in wasn’t like the apartment I was in.  It was a building that had rooms in it much like a hotel would.  We walked through a lot of stuff to get to his apartment and I wasn’t at all confident that I could find my way back.  This was in a day I did not own a cell phone.  It was 1-2 o’clock in the morning and I really didn’t know where I would run.  The goal was having him escort me to the car and I realized that was going to be excruciating at the pace we were going. 

Inch by inch.  We were now in the hallway. 

Two people were in the hallway and I was tempted to yell to them to help, but at that point he silenced me with his mouth and he still had control of my body.  He was strong and I didn’t think I could push him or fend him off or even run away from him.  If I tried that, I felt I certainly would be dead.   

Inch by inch.  “You can do this,” I told myself.  “Once you get to the car, you’ll be home free.” 

Do you see how I am already talking?  I’m blaming myself for not being able to fend him off or to break free. 

Unfortunately the repeated slamming of my body up against the wall and then the concrete was taking its toll on me. 

Inch by inch.  Just keep moving towards the car. 

Eventually, we got to the car and I thought it would be a quick “get in the car and leave” type of thing but it wasn’t.  By now, I’m surprised I hadn’t vomited into his disgusting mouth.  Finally I got in the car and I said, “Here, see, here is my number and call me tomorrow.”  Finally I got away.  I shook all the way home.  I got home, took a shower, crawled into bed and cried.  I had bruising on my neck and I saw bruising on my back.  My arms and hands were also bruised.  My soul, however, was crushed.   

I had forgotten about my friend.  But upon arriving home, my friend had left a message on my answering machine to let me know where she was and I called her back.  I was terrified for her.  She asked me where I had been and I told her I would tell her when she got back to my place.  When she did, I spilled with all the details.  I’m sure back then I had more details.  Time has lessened some of those memories of inconsequential details. 

Next came the decision of whether to contact the police.  I weighed the pros and cons.  The list of “why you shouldn’t” was strong.  I voluntarily took a stranger home.  I should have known better.  After taking him home, I actually went up to his apartment.  I should have known better.  If I filed a report, he was arrested and put on trial, my character would be up for debate and I would basically be made out to look like a slut who picked up a guy at a bar and when the sex (well we didn’t actually get that far) got too rough, I left but not before saying all these things to this man (and I am NOT going to share all the horrible, vulgar things that had to come out of my mouth to save myself).   The list of reasons why I should:  If I don’t report it he may actually rape and kill someone and that will be on me.  I reasoned that he didn’t have my phone number, he didn’t know my name, he didn’t know where I lived, I don’t go to bars typically so I will never see this man again.  When blood showed up in my urine, I did have to see a physician.  I lied and said that I had fallen off a bike.  He told me he thought I had a bruised kidney and if the blood didn’t clear out within a certain amount of time I should see a nephrologist.  But the physical bruises healed; my emotional scars would not.   

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After having some time to think about it, I decided I would file a police report.  Suddenly I couldn’t remember important details like his apartment or exactly what he looked like.  I drove to his apartment complex and to the spot I thought I remembered I parked and tried to remember which building we were in and I could not.  I stopped short of walking the halls trying to find the exact apartment; I was afraid I may run into him.  At that point I decided I obviously couldn’t file a report without those details and I would just have to put it behind me.  Maybe my mind was trying to protect me by forgetting so I couldn’t file the report because deep down I didn’t really want to. 

The scars still are there.  Nightmares.  People making sudden movements towards me.  I could no longer wear clothes that covered my throat.  Dental procedures as simple as teeth cleaning became an event.  I avoided dentists until I finally couldn’t.  I asked the personnel in Patrick’s pediatric dentist’s office if they knew of a dentist who was really good with “wimps” and as luck would have it, his wife, a dentist for adults, was the perfect choice. 

After explaining what happened, she was so compassionate.  She gave me Valium for my procedures and they went very slowly.  I cried during the whole exam.  I didn’t mean to but I couldn’t keep it in.  They did as gentle of x-rays as they could with pediatric-sized things in my mouth.  Whenever my gag reflex got too much, we took a break.  The Valium continued for several appointments after that.  But as my body and mind realized this was not a threat, the Valium was discontinued.  But then I had to see another dentist in her practice and that worried me.  But things went fine.  However about two years ago I saw another dentist in her practice and as she was injecting me, it was hurting me and I said, “Please stop.”  And she didn’t.  I was more forceful and yelled, “STOP!”  And when she ignored me, I went to grab her and push her away when her assistant grabbed me and held me down.  That was a bad move.  Dr. B knew my history.  I still was not numb.  She had my whole face number except the area she needed to work.  But my dentist was going to be gone for another month or so and I told her to finish it because I wasn’t coming back.  I had nightmares about my assault…excuse me–rape….for two weeks after that, memories I thought were done haunting me. 

When I went to make my next cleaning appointment, I told them I wanted my dentist.  I explained when I came in that the dentist did not mean for that to happen but what did happen and I couldn’t tell her if I could even do x-rays.   They made me sign a waiver placing the blame on me if something bad turned up and I said “whatever.”  I made another appointment.  I was told they would put on my chart I wanted to see Dr. A only so I assumed they gave me a date she was in the office. 

I came back and made it through the cleaning.  When she told me Dr. B was coming in to check my fillings and do the oral exam part, I became belligerent.  I said, “Wait, I thought Dr. A would be here.”  She informed me that Dr. A had to leave town to take her kids to college.  I was crying.  I reminded the dental hygienist what had happened and I told them why I could never see that person again.  I said, “I’m sure she is a very nice person but she triggered memories of my assault and I’m not going to have 2 weeks of nightmares again.”  She came in and I let her do the gum check.  But she wanted to “talk” to me.  I couldn’t.  I had this anger swelling up in my throat that blocked any sound from coming out.  I managed to say, “No means no.”  I don’t care what she thought.  I think she thought I said “no” on a part of the exam and she saw me as this irrational woman.  I said it because of the last encounter I had when I said “stop” and she didn’t.  Because that reminded me of my assault…excuse me–rape. 

Then there are procedures where they want to put an oxygen mask on me.  That is the hardest.  I have to warn every doctor and anesthesiologist about it—if they put an oxygen mask on me I will punch them or worse.  I could become combative.  I don’t know why every single anesthesiologist needs to hear the entire story.  It should be enough that I say, “I was assaulted.  He tried to choke me to death.  The mask makes me feel like I’m being suffocated and I will act out in ways I cannot control.”  I don’t know why that is.  I will tell the story to one and then another will come in and want the details.  I remember one time saying, “Why do you all seem to need to know the minute little details of what happened to me and make me relive this every single time I have to undergo surgery?  It should be in the chart by now and I don’t care to talk about it again.” 

There are other echoes in my life that are just too personal to share. 

But I have developed this creep-o-meter that I trust with every fiber of my being.  My creep-o-meter has been pointing in the “DANGER WILL ROBINSON” zone with Trump ever since Ivana’s divorce deposition described the time he pulled out her hair and then violated her (and to friends she said rape).  That feeling has never gone away.  And now my creep-o-meter was accurate.  

 This morning I sat watching a very intelligent woman named Sandy who has her master’s degree in science who is a former Democrat who was for Jeb Bush but now switched to Donald; however, if it was Ted Cruz she would have flipped back to Hillary even though she says Hillary is a crook.  She was a Clinton supporter in the distant past.  She vocalizes the myth, “Did they complain about it at the time.”  And because they didn’t, that makes this false.  And she says if one story is false (speaking of the airplane “fact”), then they are all false.  She also cited the reason she didn’t believe the airplane incident is “because the seat arms in first class did not go up.”  The reporter says to her, “You think the women are lying.”  She says, “Yeah.”   This woman is part of our problem.  But I was this woman in my early 20’s.  I couldn’t imagine having this done to you and not speaking out and not pressing charges until it happened and I didn’t. 

Fact checking that about the arm rests proves that she is incorrect about that.  “A 1979 flight attendant manual furnished by the Braniff Airways Foundation stated “the arm rests in first class are removable by pulling up.”  See below.  So if that fact is now true, does that make them all true?  I would have liked for someone to have fact-checked this woman while the interview was going on and ask her what her opinion was based on the new irrefutable evidence that the seat arms in first class on that plane did go up.  Now there is also a friend of Trump’s from Great Britain saying Donald was, in fact, on that flight. 

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Trump’s narcissistic sociopathy is being fed by all these people who think he is a God and can do no wrong.  I encourage then to watch PBS’ “The Choice” which profiled both candidates and you can see the early roots into both of them and how they behaved.  You can see that Trump is not the business man he presents to you as.  It is not a partisan representation for either side.  It is a truth-based documentary on how they grew up and how things in their lives influence the people they have become.  It even shows you the psychological component of Roy Cohn’s influence on him of never admitting defeat so if Donald Trump loses the election, it will not be “his” fault.  It will be the fault of some other reason, like a rigged election. 

I said to Jeff last night that I’m glad that our family line will end with Patrick (because my son with autism is not competent to be a father).  I have never been as pessimistic about the future of mankind as I am today. 

I used to be the one who would complain when rape victims didn’t come forward to report the crime.  UNTIL YOU ARE IN THE SITUATION, YOU CANNOT SPEAK FOR THESE WOMEN.  I would like to apologize to all women I spoke about back in my early 20’s when I was ignorant to understand why some do not report such things.  With Donald Trump, the stakes are even higher because if the allegation was made, Donald Trump had the power that would discredit them to the point where they might lose their livelihood at the very least, and they worked too hard.  Or perhaps they wouldn’t be believed as I felt was in my case.  Trump has the powerful lawyers; these women did not.  Unfortunately the consequence to that is that it embolden Trump to believe that he is allowed to do these things because no one would ever say anything because of his power. 

To all the women Trump has assaulted, the ones coming forward and the ones remaining silent, I understand now.  I stand in support of you. 





Twenty-Five Years Since We Met

4 07 2015

FireworksOur relationship started out like most people. We were set up on a blind date and ended up being chased by the police by the end of the evening. Wait? They don’t?

My trip began in late June when I went up to New York from Houston to be in my dear friend’s wedding. Louise and I had been high school friends since our sophomore year. I spent a lot of time at her house. When my foster family decided to move to Florida at the end of my junior year in high school, I had three choices; 1) go live with my biological sisters who were both now in Houston; 2) go with them; 3) or be put into a foster home. Option 4 unexpectedly came up from Louise’s parents—come live with them. For reasons that aren’t relevant for this topic, I decided to go with my foster parents to Florida (in case all my friends from high school wondered where I went for my senior year). There were a few people I still stayed in touch with, and Louise was one of them. I was honored to be a part of her magical day and the few days leading up to it.

The next day when I left their apartment the day after the wedding on June 30, 1990, my trip took me to Toms River, New Jersey to spend a few days with my sister. After there, I went to the western part of New Jersey to visit my aunt and uncle overnight on their farm in Blairstown/Hope. From there, I went back to Long Island. I stayed with my high school friend Carolyn Leitgeb, now Carolyn Mulderig. My best buddy Patty had invited me out several evenings trying to play matchmaker. On July 4, Carolyn and her family and I went to Montauk for the day. We walked around a lot, including up into the Montauk Lighthouse, some place where I had never been before. Patty called me and begged me to PLEASE come out this one last night. I was tired. I had to leave at 5:30 a.m. for my flight back to Houston. I remember saying to her, “I have driven more than 700 miles and have gotten an average of 3-1/2 hours of sleep every night since I came up here.” After a few more dozen “please” promptings, I said okay, but I needed to have strawberry shortcake that Carolyn made from scratch (it would have been rude to have her put in so much effort and then ditch her for the evening, especially since she was kind enough to let me stay with her family for this last part of the trip. I still had to go over to say hello to my foster brother and sister. When I was leaving, my foster brother took my car keys in a game of keep away that annoyed me. Now I was going to be late.

I went to Patty’s house and we had pictures taken, and then we went to Mario’s. Patty told me this was her boyfriend Larry’s best friend, Jeff, and he was SUCH A NICE GUY. She said that over and over again. From what I discovered later, Larry and Jeff were able to leave because we were so late and they were tired of waiting. It was somewhere like 10:30-11:00 p.m. when we finally got over there.

We talked for a bit and when Jeff went to the bathroom Patty asked me, “Sooooo?” I said, “Wow, he can actually carry an intelligent conversation.” But he wasn’t my type. Now you might be asking,  “What was your type?” Do you know how you are in a room and you feel this chemistry towards someone? When you come from a dysfunctional family, usually that chemistry will lead you to the people who are alcoholics, drug users, abusers, etc. I remember watching an episode of Phil Donohue where a former pageant queen was saying that all of her life she was picking the wrong men, and then she realized what she was doing and stopped and was married now to the man of her dreams. About two years prior to this, I also made peace with the fact that I would be okay if I never married because I would rather be not married than marry the wrong person.

Once Mario’s closed for the evening, Patty and Larry went home. I had said that the one thing I still hadn’t seen on my trip was water (yep, even though I was in Toms River). I crave the salt water smell. Jeff said he knew of a place we could go so I followed him in my rental car. We settled onto the beach and continued our conversation. There was a boat in the water with a headlight but I didn’t think anything of it. The young man running past us telling us to get out of here because the cops were here DID get my attention. In a split second what was rushing in my head was—I can’t go to jail. What thought did not enter my brain was I needed to grab my purse as I was trying to flee the police. The purse that had my airplane tickets for my return home the next day. We got as far as the parking lot before the cop car came speeding up to us. I grabbed Jeff and said, “Stop running.” I knew this would become so much worse if we ran in full view of a police officer. He pulled down his window and I said to him, “Officer, I am so sorry. I am from out of town and I didn’t realize we weren’t allowed to be on the beach this late at night. I am leaving in the morning and wanted to see the water before I left.” I hadn’t been drinking (I am allergic to alcohol) so he could see that I was not driving while under the influence. I was also dressed in nice clothing. He stayed with us until we both got in our respective cars, and Jeff drove us to a place over by the main post office, not far from where he lived. We could not exactly go back to his place because he was living with his parents at the time. So the town square seemed like a reasonable alternative. The police car followed us until we did pull over, and I am certain, he ran the plates on my rental car (which were from New Jersey so he could see I was not lying). Once we pulled over, he passed us.

I came to find out later that this particular beach was being raided for drugs.  In fact, it was being raided when we were on it.  It was a notorious hang-out for people making drug deals.  That husband of mine.  So romantic (sarcasm).  He knew that about the beach, too.

Jeff and I continued our conversation until about 3:30-4:30 in the morning. I had just enough time to go home, get my stuff in my suitcases, and write a note to Carolyn and her husband.

At the airport, I was on the pay phone with Patty who wanted to know all the details. I almost missed my flight home because of it. A day or two later, I got a dozen beautiful red roses. Jeff and I spent hours on the phone and were faxing each other. This was back in the day where there was no internet (at least it wasn’t common for people like us). Two weeks later he came down for a visit. It wasn’t uncommon for us to have 2+ hour conversations on a daily basis.

When he told me he wanted to move down to Houston, I panicked. Things did not go well when my ex boyfriend from Florida moved here trying to rekindle a relationship again. I told him that if he decided to move here, it needed to be because he wanted to move to Houston. If things did not work out, I did not want to feel guilty for him being stuck here. Also, he could not live with me.

I guess it wasn’t until his Christmas 1990 trip that I realized I loved him. He moved down in January of 1991 to his own apartment. In June of 1991 he proposed to me. We went to his cousin’s wedding on August 10 up in Ohio and we let people know the next day after the wedding that we were engaged. We eventually set our wedding date for October 24, 1992.

Today is the silver anniversary of the day we met. Happy Unindependence Day my love. It was the day I allowed you to sneak into my heart (although I didn’t know it at the time) which made this extremely independent girl something different. Blind dates can be wonderful. I had been on my fair share in my adult life. I never knew though we would be sitting here 25 years later celebrating our wacky, unusual, totally weird date that turned into so many years of love, sacrifice, forgiveness, and trust.

Baby, you indeed are my fireworks.  I look forward to our 25th wedding anniversary in 2 more years.





Stop Supporting Autism Speaks

2 04 2015

Autism Speaks Do Not Support BoycottMany people, including myself in the past, donate to Autism Speaks thinking that this corporation is the best vehicle to help support autism research and help those families who are financially crippled, who need respite desperately, who had to quit their jobs in order to care for their child, a family who may have gone through divorce because autism is TOO stressful on a marriage, etc. The physical and emotional toll is great on the entire family. Some parents have multiple children with this disease.

In about 2009 or 2010, I started paying attention to the organization that was getting all our hard-earned dollars.

John Elder Robison was the only person with autism on a board at Autism Speaks.  He resigned from the Science and Treatment boards on November 13, 2013. Read his post here. In summary he said that he could no longer be part of an organization who would not listen to his counsel. He felt Autism Speaks needed to be an organization that helped people with autism and not an organization who sought to cure him of something that is his identity. I do whole-heartedly understand this point of view. Autism is a full spectrum disorder. My son lives in a state of hell and is at risk for being abused because he is nonverbal and cannot read or write. Local author Elizabeth Moon, a mother of a person with autism, posed this very dilemma in her book “The Speed of Dark.” If a cure was available, would you take it? I would love my child no matter who he was.  If life could be easier for him, I would give him that cure even if that meant who he now disappeared. I do, however, appreciate that those people with autism who are able to share an opinion on that would not want to be changed.  I respect the feelings of the families of those people who support them.  It doesn’t mean there is a right or wrong point of view; we each have to make a personal decision about our feelings on this matter.

In March of 2015, Autism Speaks invited its 168,000 Twitter followers and 1.5 million Facebook fans to use the hashtag #AutismSpeaks10 to share how “AS has touched your life” to celebrate their 10th anniversary. Instead of receiving gushing responses on how their lives were helped, people with autism and their families took to Twitter to have a word-war with Autism Speaks saying that they don’t want to be cured and that they want their resources to making their lives better and not to “cure” them. In essence, Autism Speaks does not speak for them. Autism Speaks had delusions of grandeur if they expected people to respond because they have not helped many people at all. Autism Speaks helps itself.  Only about 4% of the money you send to them actually goes to help them.

The Judge Rotenberg Center in Massachusetts is under investigation by the Department of Justice and the FDA for the use of torture (see page 84 of the United Nations Special Rapporteur on Torture). The State of Massachusetts and disability rights advocates have been working to shut this facility down. Even despite this information coming to light, Autism Speaks has allowed the facility to recruit new admissions from families seeking resources at their fundraising walks. If you don’t know or remember about this story, here is a clip from it and a link to the 26-minute story of someone who actually previously lived there and the reasons she was given shock treatments.  (The individual has disabled embedding so this link will go directly to her YouTube video).  I am warning you–this video below is awful to watch, but how one can support Autism Speaks when they support this center?

Show Me The Money

In closely examining the 2013 tax return Form 990 and independent financial audit, Autism Speaks took in a whopping $122,141,069. Of that, $15,300,709 went to research (or 12.5% of your money) and of that amount, only 1% goes towards research on the needs of adults with autism. Of that money, $5,532,344 went to projects associated with board members of Autism Speaks (or 36% of all grant money awarded). Families received only $4,631,690 (or 3.79%) of the money you gave to Autism Speaks. Advertising (for more of your dollars) cost you $52,229,994 (or 43% of their budget). Salaries took $18,771,965 of those donate dollars (or 15.3%) and $4,528,226 in benefits and payroll taxes (or 3.7% — as much as they give to families). Thirteen of their board members make six-figure salaries. See pages 9 and 10 on their Form 990 filed with the IRS.
The problem with the Autism Speak walks is that they do not give any of that back to the local communities. Money that people are giving to support people participating in that walk goes to Autism Speaks big machine. With state budgets cutting funding to people with disabilities in general, and is usually one of the first things on the cutting block because of horrible stereotypes of people with disabilities, money you give to Autism Speaks means they might lose those dollars if you only knew about their organizations. Local organizations usually are run by volunteers who draw no salaries and the majority of their resources going directly to helping in some way.

Board members have perks, too, like getting funding from Autism Speaks for their pet autism projects. Per Autism Speaks Financial Report of 2013:   “AS has arrangements to grant a portion of the net proceeds of certain fund-raising events to partners. Amounts representing the partners’ share of net event proceeds as described below are reflected as grants in the accompanying consolidated financial statements.

Event Partner Grants
Speeding for a Cure The Gillen Brewer School — 50% of net proceeds

Atlanta Walk The Marcus Institute — 50% of net proceeds

Phoenix Walk The Southwest Autism Research &  Resource Center (SARRC) — 50% of net proceeds

Westchester/Fairfield Walk Center for Autism and the Developing Brain at New York Presbyterian — 15% of net proceeds

Winter Ball for Autism New York Collaborates for Autism — 50% of net proceeds

The Atlanta Walk had net proceeds of $542,000, 50% of which was granted to The Marcus Institute, the co-founder of which is an AS Board member.

The Westchester/Fairfield Walk had net proceeds of $968,000, 15% of which was granted to the Center for Autism and the Developing Brain at New York Presbyterian. An AS Board member is on the Board of Trustees of New York Presbyterian Hospital.

The Winter Ball for Autism had net proceeds of $2,682,000 in 2013, 50% of which was granted to the New York Collaborates for Autism, the co-founder of which is an AS Board member.

Five members of the Board of Directors of AS and two management employees are affiliated with institutions that received funding from AS. At December 31, 2013, AS had grants payable and commitments to these institutions totaling approximately $5,532,344. During the year ended December 31, 2013, AS’s expenses included approximately $3,669,960 related to awards granted to institutions affiliated with an AS Board member or management employee. Certain members of AS’s Scientific Advisory Committee and Scientific Review Panel, which are involved in the grant appropriation process, are also associated with institutions that receive funding from AS.”

Why You Shouldn’t Light It Up Blue

We have enough “Autism Awareness.” In fact, it has moved into overkill to the point where people roll their eyes when they hear someone say, “My child has autism.” They see a child in a meltdown mode in a store because of some sort of sensory overwhelm and they shake their heads or mumble to another person in the store or share “looks” about bad parenting. People with autism who have the ability to express themselves do not like Autism Speaks. Parents who have had children with autism for awhile have learned about Autism Speaks and will not support them because of their lack of assistance. The “Light It Up Blue” campaign is a direct advertising campaign from Autism Speaks. When you buy a blue bulb from Home Depot, you are supporting them. The co-founder of Home Depot is a board member of Autism Speaks.

I would like to see more “action” come from this organization instead of raising funds to support themselves.

If after all of this information you decide you still want to contribute to Autism Speaks that is your business. All I want to do is inform people so they can make a more informed choice of where their hard-earned money may go.

My son Patrick.

My son Patrick. The center of my universe