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Hi ! I am Susan. I'm 47 years old and A survivor. Between my husband and I we have 10 kids and 14 grandkids, with two more on the way. I am a realtor by profession and a writer by heart. Two years ago I had a brain aneurysm that ruptured and things didn't look good. Two brain surgeries and 2 years later I was on my way to a full recovery. I was very lucky, the only problem I had was a loss of a little short term memory but that cleared up rather quickly. I met my husband Bill about six months after my little ordeal and it was like someone pushed us together. He is the best. I still get headaches and he is right there to help or just to reassure. Take heart there is life after brain surgery, and your hair does grow back.This bio was written in 1999.
13 May 1999
February 7, 1997. I am too tired to work on my new home, I walk over to a friend's home. The next thing I know, I fall and scream for help. I ask him to call my sister, my daughter and my son and 911, I can't move. well to make a long story short, I had a ruptured brain aneurysm.
After being diagnosed at a local hospital I am transported to the University of Pennsylvania hospital where surgery is performed. Four days later another surgery to lessen the amount of brain swelling. My family is told it might take a year to get back on my feet 100%. Did I fool them, 60 days later I walked into my office.
Shortly thereafter I had a bout of hydrocephalus. Recovered I did better than anyone could have dreamed. I found the love of my life and was married 3/14/98. Sometime shortly after the wedding I was chemically poisoned by a gasoline leak, the nightmare was back.
I suffered from terrible headaches. I was referred to Jefferson Headache Center and they are wonderful. I was on the road again. But the last couple of weeks, I have had pressure in my head. Today it dawned on me what it was like, the evil demon hydrocephalus.
I am awaiting a call from Jefferson and we will go on from there. But trust me, I am a strong 47 year old woman, who keeps on working, checking on our ten children and fourteen grandchildren. Hopefully I will overcome this obstacle.
Update 11 Jul 1999
First of all our 15th grandchild was born July 8th, an absolutely beautiful baby girl, Lindsey Edith.
Second, I did not have hydrocephalus. But I did have a mini stroke on May 16th. What a disaster. I woke up feeling fine and within an hour the right side of my face was spastic and I felt the strength in my right side dwindle. Bill was away, so I called my kids and my daughter in law, who is a neurological nurse. They took me to the local hospital, where they said I had trigeminal neuralgia and sent me home. Another strike against them.
Saw my neurologist a few days later and he was to say the least a little upset. I was very lucky, no impairments. But I have slowed down a little. I do notice that I tire more easily. I have to have another scan done which should be this week. I don't give up, I am determined to beat whatever comes my way. As I have told so many, My Dad, who died of a rupture is my special angel. I do lend him out on occasion, but call him back. He has certainly got a workout lately.
Update 4 Jan 2000
Well, It is time to update my friends. First of all , Nickolai Alexander made his appearance Sept.20, 1999 That makes grandchild number 16. The rest of the good news is that the headaches have subsided. God Bless Dr. Rosen At Jefferson Hosp. He finally found the right combination of Meds and the headaches are under control. It is wonderful not having to worry about when the next one might occur.
This site has been such a blessing. To know that you are not alone in what you are feeling or experiencing. Before I found this site I would think that I was the only one in this big world who was having some of the problems that were occuring or some of the emotions that were running rampant. It was comforting to know that I wasn't an alien and there were other people like me. So often when a person heard that I had a rupture they would look at me as if I had three heads. Now I realize they were just shocked that I made it and did so well. Bill and I have made such wonderful friends. In fact we have spent time with some and they will be spending time with us this month. We are looking forward to the conference in June where we will hopefully meet some of the rest of this large loving family.
Update 7 Jan 2001
Well, to say the least this year has had many ups and downs. I thought we had the headaches under control but I was wrong. In June I was working in the garden and when I bent my head, I had this terrible pain shoot across my skull. It was not the normal headache pain, this was something totally new. It went away quickly but I knew it was something I needed to talk to Dr. Rosen about. Before I even got to see him it happened several more times and now I was scared.
When I finally got to see him he looked at my skull and thought there was a separation between the plate and the skull. He sent me for an Xray and a visit to my neurosurgeon. My surgeon wasn't happy with the Xray so off for a MRI (as we all know, what a nightmare, the noise ! ) Ten days later and I call looking for answers. His receptionist called and said the report was fine.
I was not happy, what did that radiologist have to compare it with and my surgeon had not seen the scan. Back to Dr. Rosen and another gentleman and they both see that something is out of whack. One is saying separation the other is saying maybe a leak or another aneurysm. I don't get warm fuzzy feelings with all of this. Dr. Rosen sends me to my primary because my blood pressure has been elevated. I never had high blood pressure and now it is extremely high. So now I am on blood pressure medication. I am still in limbo and having a terrible time with skull pain.
I see Dr. Rosen at Jefferson on Jan. 23rd and then he will decide if I need an MRAngiogram or another course of action. So until then I will hang in here and pray for the best.
I would like to thank everyone for their kind words and prayers, beautiful poems and lovely cards when my brother Larry died. This family is just the BEST!
Update 7 Feb 2001
Well today is the 4th anniversary of my second birthday. Four years ago today I was given a second chance. And I am here enjoying it to the utmost!!!! And I got news yesterday that a poem I had submitted to a contest is being published in a book of poetry, with a chance also to win some prize money!! I wrote the poem A SWEET AND MAGICAL CHILD for my grandson Mikey ( one of my hearts), after my aneurysm surgery. Life is good. I love all of you!
Update 6 May 2001
What a week this has been!! Monday morning I was at a home inspection (part of a Realtor's job) when I felt this popping in my head. It hurt but only for a moment. And then it happened again 3 more times. Then I felt something like a mini explosion and the right side of my face was numb. Scared me and the other agent who was across from me and saw the look on my face. I finished the inspection and stopped at my Mom's house which was only a few blocks away. She asked if I wanted a cup of coffee and I declined (she said that should have been her first clue something was wrong ). I only stayed a few minutes and went home and called my neurologist Dr. Rosen. He said for me to get to the closest ER and not to drive.
I called my broker who was closest to me. She put me on hold and called 911. When she told me that I went ballistic. I asked her if that was the only number she knew and hung up. In the meantime my brother and our secretary got there about the same time as the ambulance. I was taken to Montgomery Hospital where I was to have a scan and a spinal tap. I think they have a contract on my life, every time I go there we have a major problem. They missed the spinal a few times and I left.
I saw my surgeon on Wednesday. He was hoping I wouldn't have to have another arteriogram but I got the call Friday that they scheduled me for Thursday 5/10. I will be premedicated on Wednesday due to my allergy to the dye. I need a lot of prayers because I am petrified of this test and what the results could be. So I am asking our family to say a prayer for me.
God Bless everyone!
Update 24 May 2001
Well the arteriogram went well, much better than I expected. The staff at Einstein Hospital in Philadelphia could not have been more kind, caring or gentle. The results were NO RESIDUAL ANEURYSM and NO BLEED!! Dr. Kotapka thinks I have pushed the envelope a little too far this time. No more 18 hour days. He reminded me that 4 years ago he told me that what I had been through was life altering.
I guess the Good Lord gave me a reality check, time to slow it down a bit. It worked! I have made up my mind to take time and smell the roses. I also promised Bill that I would learn to relax and to understand that that there is nothing wrong with not being busy my every moment of the day. So here is to the first day of the rest of my life.
God bless everyone and thanks to all of you who sent me a note wishing me well.
Update 4 Aug 2001
I am experiencing some severe problems right now. Since the 4th of July, I have been getting severe headaches again. They are different then before. It is an enormous amount of pressure that keeps on building. I have been to the E. R. twice for shots. The scary part is I have had a fever, sore neck and my bones hurt. This last week has been a nightmare.
None of the meds are working. Only a shot of Demerol and Visterol have had any effect and that is only a temporary fix. I see the Dr. again on Monday and hopefully I won't be back in the E.R. before that. Please say a prayer for me.
Update 7 Mar 2002
It has been a while since my last update and quite a bit has happened. First Bill and I went on a wonderful three week vacation in the fall. We spent the majority of the time in Maui! I have a new whine, "Take me back to Maui." I only had one headache in three weeks and it wasn't so bad.
My family doctor and my neurologist both moved away, I am starting to get a complex. My new neurologist is wonderful and I truly have faith in her. She gave me Zanaflex for the headaches and spasms but it has proven to be worthless. Back to the drawing board. The new issue I am dealing with is spasms on the right side of my face and then it seems that I get eye floaters and my eyesight seems to be pulsating. Has anyone else had this happen to them?
As some of you are aware some of our family members are dealing with the horrors of insurance companies. Most of them and a lot of doctors don't have a clue as to what we deal with and also how to treat us. As Human Beings would be a start not guinea pigs! We need more research and need to get our legislators involved.
I will once again praise Dr. Mark Kotapka, my neurosurgeon. I called him today to get some info for Kim. He tracked me down and not only gave me the info he offered to look at her films. What a guy!
Our 17th grandchild is due around the end of April. If this family keeps growing I will be Christmas Shopping two years in advance!
God bless all of you! And may you have Many Happy Heart Days!
Update: 5 Aug 2002
Just thought I would update our family. We have a new grandson, Conner, who is adorable although big enough that the professional football scouts have already checked him out. That now brings our count to seventeen grandchildren, 7 boys and ten girls.
The headaches have not been as bad this year, praise God and my Angels. I am having surgery on my right knee this Wednesday. I tore the meniscus ligament in May and they wanted me to do physical therapy for seven weeks to build up the leg before the surgery. So, please keep me in your prayers.
At the end of the month, Bill and I will be going to the Poets Convention in DC. I am scheduled to win a silver bowl and am eligible to submit another poem for the big contest. I am really looking forward to this. It just goes to prove some people wrong, I am NOT totally brain dead!
I love you all. Have a Happy Heart day!
Update: 7 Jan 2003
As I stated before I had knee surgery in August. Well, the surgery didn't seem to help and my leg was getting worse. I had it drained a couple of times and was in pain constantly. Well, I finally figured it out. I was on Zocor. That was the culprit. I threw it away and told my family doctor I may die of high cholesterol but I will go out dancing!! My knee is almost healed at this point, and I don't have MD or rocket scientist after my name.
The headaches were almost non existent for a few months but they are back. Almost every night it starts in the back of my skull as a dull ache and just keeps on going. I feel blessed if I wake up in the morning and it is gone.
Bill had shoulder surgery in Nov. His blood pressure was extremely high and they considered canceling the surgery. Well, they went ahead with it and it spiked and they had to give him something to bring it down. Then it went too low and they had to give him another drug to bring it up. Well, it went from bad to worse. His blood pressure was out of control and nobody but me was taking it seriously. About a month later he called me at the office and said I lost it and when I asked him what he said his mind. I thought he was joking and he said no something happened. I made it home in a New York minute and threw a blood pressure cuff on him 226/115. I put him in the car and rushed to the hospital.
Six hours in the ER and never saw a doctor. He was admitted and the next morning they were going to send him home. I fussed and screamed and demanded a neurologist and certain test. The jerk doctor put him on Welbutrin. A no no with certain blood pressure pills. His pressure got worse. Well, to make a long story short, we got two new doctors and they seem to have a handle on this. Amen!
In one months time we discovered three drugs between the two of us, that should not have been prescribed. Why is it that we can get this info and the guys with MD can't?
Now for the good news. Our son Terry and his wife Joanne are expecting. They have not been able to conceive. They tried in vitro twice and no luck. Joanne's identical twin offered to carry the baby for her sister. They went thru a lot with all the legal issues and the in vitro again, BUT it worked. The baby is due in JULY. We are all so excited and grateful to Joanne's sister Theresa. She said, she loves her sister and just wanted her to be happy. How beautiful and giving!
Update: 03 Aug 2003
Well, this has been an exciting year. We have our new grandson. Our miracle baby, Will, was born Aug. 1st. He is so beautiful and His Mommy and Daddy look like they have seen heaven. Now my daughter Leslie's little boy, Julien was diagnosed with Scarlet Fever the other day. I had him at the doctors and when she said that I almost fell over. Seems there has been a resurgence of this disease in the past couple of years. We got it early and he will be just fine.
In June, I was having issues with blood pressure. It started bottoming out. On Friday, the 13th, it went down to 60/40. Emergency room run again. They did a few tests and then said they had no scans to compare it with. I looked at him in complete disbelief. I wanted to ask him who was brain damaged here but decided to keep my mouth shut. After a few hours it went to 90/50 and they sent me home. Saw my primary doctor and she sent me to a cardiologist and back to my neurosurgeon. The cardiologist said he wanted me to come off the blood pressure pill I was prescribed and I did. Now this was a shocker. He said, " I see no correlation between headaches and high blood pressure." At that point I said to him,"Needless to say you have never had a migraine!" He thought he might have once, Again, "you have never had a headache."
My neurosurgeon, Mark Kotapka, as always is my knight in shining armor. He feels that my intra cranial pressure has changed. He wants to make sure my pressure is monitored. He also said that it could be that my body is changing and there is no need for the blood pressure pill. Anyway he made me feel better.
The book I wrote CHRONICLES OF A HEART should be released in the fall. It will be my back door to finally bring brain injury awareness to many. My primary doctor asked me if I would speak to her medical student. We chatted for 15 minutes and she was amazed at what she learned. She asked if she could get clearance from her dean, if I would speak to her class. We will bring awareness to the masses, one slow step at a time.
God Bless all of you and may you all have many Happy Heart Days!!!!!!!!!
Editor's note: 03 Oct 2003
Congratulations, Susan, on the upcoming release of your book! (Front and back cover page of Chronicles of the Heart.)
Update: 19 October 2004
Well, it has been a long time since my last update. It had been a while since I had serious issues, that is until Sept. 28th. It started out with me preparing a nice dinner for my husband's birthday. Things went down hill quickly. We had 7 inches of rain that afternoon, the pool overflowed into my basement. We now had 4 inches of water over 2100 sq. ft. Talk about a mess.
I was helping my husband, Bill, get the water up and was lugging it up the steps. A sudden severe headache came on along with nausea and I was shaky. My neighbors Wendy and Stuart were over helping. Wendy is a nurse. I whispered to her that I thought I was having a bleed. She took my B/P and it was elevated, my grip was off and I was confused. For a moment I thought the president was Reagan, quickly I said no, Clinton and then it dawned on me BUSH! She and my sister Jean put me in the car and took me to the hospital. When we arrived I tried to get out of the car and my legs gave out. Understand, I am still screaming Bush is the president.
They rushed me for a CT scan. By now I am freezing and I am screaming with the pain in my head. Finally, a friend of my son's was a nurse working the ER. He got permission to give me Dilaudid, IV. I thought my head was coming off. He kept telling me to, "go with it." I asked him, "Where, straight to hell?"
My kids kept asking me if I fell or bumped my face. I answered no but wanted to know why they were asking, they said the right side of my face was bruised. As the pain medication began working the bruise dissipated. They were checking to see how confused I still was. My daughter asked who the Pope was, I answered John, I knew I was safe with that answer. She wasn't happy with my answer. I finally remembered John Paul and she had the nerve to ask me which one. At that point I begged them to go home.
Three and a half hours later the doctor came in to tell me that the scan was clear and he needed to do a lumbar puncture. I told him he had one chance. Well, he did it and didn't hurt me at all. I could have kissed him. That was clear.
My B/P was dropping and no one noticed. I pulled the cardiac leads off thinking that would get me some attention. Wrong. Finally when it was 90/40 I asked Bill to get someone. The doctor came in and ordered an IV. Thirty-five minutes later I got that. Then they sent me home at 2 AM.
Friday, my primary sent me back again and they just medicated me. My left leg was not right. I was sent to my orthopedic surgeon. He examined my leg and asked when I had a stroke. My quad muscle was basically gone. He said with the condition my leg was in, a stroke was likely the culprit. No one else, other than my neighbor who told the ER personnel she thought it was a stroke, even mentioned it. What's wrong with this picture??
I see my neurosurgeon on Nov.2nd and he is thinking it is cervical stenosis but HMO won't approve the MRI of the spine. Welcome to the World of Aetna US Healthcare HMO. They have raised our premiums, raised our copays and cut services. So now I wait till an appeal can be made forcing them to approve the MRI.
I truly am testing my new words to live by: LIFE IS A JOURNEY, NOT TO ARRIVE AT THE GRAVE IN A SAFELY PRESERVED BODY, BUT TO SKID IN SIDEWAYS, TOTALLY WORNOUT SCREAMING, HOLY S - -T WHAT A RIDE.
Have a Happy Heart Day!
Update: 10 December 2004
The mini stroke really did a job on my left leg. It just seemed to be getting worse daily. On the 19th of November I was in the office preparing for closings. I went down 2 steps, but took the step wrong. Now I did one of those silent screams, I didn't want to upset everyone. Got thru that closing got in the car went to another, back to the office, two other stops before I got home. My leg didn't look so good and at this point I was walking with a cane.
I saw the orthopedic surgeon, he sent me for an MRI, torn meniscus and arthritis under the knee cap. Surgery is set for January 4th. The Doctor must not have a lot of faith that I will make it till then. He told me he would be away from Christmas till New Years but he had someone covering. Trust me, if something happens that week including my leg falling off, I will strap it back on till Dr. Puleo returns, not taking any chances.
Finally got the precertification for the cervical MRI, no stenosis. Back to the drawing board. We really are pioneers in this field. Hey, they might read about us in history books someday. Now that is a scary thought.
Love to all and may you all have Many Happy Heart Days.
Update: 8 February 2005
Well, today (February 7) is the eight anniversary of my PIVOTAL MOMENT. Actually, this was the easiest one. This time I did not go thru the feelings of doom and despair as I did every other year.
I had my knee surgery Jan. 4th and did exceptionally well. I was a nervous wreck over this surgery. When I saw my primary doc prior to the surgery, she wouldn't give me medical clearance. I flunked the cardiogram. Now, I explained to her that was her fault not mine. I waited a long time in a very cold ugly room so I was agitated. She thought it could have been the triple venti cappuccino I was drinking but forced me to see yet another doctor, a cardiologist. I was fine, must have studied hard for that test.
Surgery was scheduled for noon. I was not happy about that, but oh well. Of course, I made sure I told the anesthesiologist that he had better be careful with the spinal, he had done it right the last time and I didn't need him to screw up this time. Then my surgeon came in and it was really late I HAD to ask him if his vacation was extended. He just thinks I am too funny. Well, within 1 week I was walking without a limp. Three weeks after the surgery I shoveled snow, when I told the surgeon he warned me not to screw up his good work.
The week before Christmas I was sitting at my desk, when I got up I had terrible pain in my back. Later in the day I thought it could be a kidney infection. I saw the doctor the next day and he didn't think so, he sent me for X-rays and turned out that my back is riddled with arthritis. Thankfully, the pain subsided in a few days.
All in all, I am doing well. The focusing issues from the stroke seem to be resolving themselves. My publisher sent a note and my book should be released in approx. eight months. With a lot of hard work we will bring Brain Injury Awareness to the masses!
Have a Happy Heart Day!
Update: 12 May 2005
About a month ago I started getting headaches that were as close to the headache I had when I ruptured. Nothing worked not even dilaudid or percocet. I knew that if I jumped out a window the only thing I would hurt is my pride...I live in a rancher.
Thank God for Kim, we were talking and I told her about this headache and that my jaw hurt. She told me to get to the dentist, I argued that my teeth didn't hurt and that I had no swelling. Well, I listened and went. I had an abscess in my jawbone. It went from the middle of the right side of my jaw to my ear. Well, seventeen shots of Novocain to get three teeth extracted.
My dentist said I was two steps away from being admitted to the hospital and that it could have been fatal. I explained to him that I really didn't think abscess, no visible signs. He said he understood and that he knows I deal with headaches almost on a constant basis and have learned to work thru them. It was an awful situation that ended OK but could have been the last headache I would ever deal with. Not ready for that...I still have a lot of people to annoy.
Good news came today...my author copies for Time For Uncle Guido arrived a month early. This is totally about brain injury awareness and the plight of our family. This book will put us on the map, I made a promise to my Angels that I would never quit so here it is! "Time for Uncle Guido"
Update: 20 February 2006
I thought now might be the time to do an update. The 7th of February was my 9th anniversary of my second birthday. This year was really a tough one. I know what to expect but it still hit hard for about two weeks. I had the urge to cry at the drop of a hat and heaven help you if you even looked at me crooked. And for some reason my family tends to ignore the day completely which makes me crazier than I usually am. When I say something to them they tell me that they would prefer to forget that day, it was awful, and they thought they would lose me. Hey, if they thought it was awful, think about how I felt 21 days later. Ok now that I got that over with I will continue with my update.
I am glad that 2005 is over with. It started out with knee surgery in January. In the spring I had an awful infection in my jaw. In October I got pneumonia. Two weeks before Christmas I got some type of sty that swelled the right side of my face, enough that I wouldn't even go to the mailbox till after dark. And then the big one...the week before Christmas I went into anaphylactic shock.
It was 2:30 in the morning, I was sitting on the couch and my hip itched. I thought I saw a little bite. The next thing I know my entire trunk, the tops of my legs and arms, the back of my neck and head were covered with hives. I woke Bill and told him to get me to the hospital. I was trying to rip off my own skin. The nurse took one look at me and threw three ports in my arm. My B/P was 90/60 and my temp was down to 95. She told me I was lucky I got there when I did. If the hives would have hit my face they would then go to my throat. They kept me a couple of hours and sent me home. I had scratched so hard that I was completely bruised. I saw an allergist and he said it was from an Aleve I had taken...go figure.
But thank God there were lots of good things that happened also, my book was released and I did a book signing. Bill and I made a visit to Georgia and had the wonderful pleasure of meeting our mentor Bill Maples and his absolutely wonderful wife Pat.
I am still having a blast with my grandbabies and they do keep me stepping. I am grateful that I am not their parents with all of the sports they play. I get there when I can and when the little guys play, you can't help but laugh. In fact Julien, who is now seven and smarter than you can imagine is spending the night with me tonight. He was standing over me while I was typing and he read almost every word.
Julien spends a lot of time with us and he keeps us in stitches. He goes out to dinner with us and entertains everyone there. When we show up without him they want to know where he is. Having grandkids is wonderful and spoiling them is a great way to get back at your kids.
Last week I had a real frightening situation. Our weather has been crazy, a week ago we had 18" of snow, within a few days the temperature got to 60. Well, Friday the temperature started to drop and the winds picked up with 50mph gusts. I was driving to my office when a tree limb fell on my car, hitting the windshield and hood. I almost had a heart attack. I pulled over the best I could being there was no shoulder. The limb was now in the middle of the road. I knew it had to be moved, so I struggled to pull it to the side while a guy in a big dump truck and another guy in the car behind me watched. I guess chivalry is dead. By the way the windshield didn't break!
I am always grateful for being a member of this family. I wish all many Happy Heart Days!
Update: 13 July 2006
Well, as always my life is interesting. Let's do the bad news first. A month ago I walked out in the backyard and took a fall. Before I hit the dirt, I heard a break. Well, once I was able to get myself together I knew that my right foot was broken and the left foot was either broken or badly injured. I am now sitting in the middle of the yard using words that would put me in the Truck Drivers Hall Of Fame. Bill had to call an ambulance to get me to the hospital.
As the paramedics wheeled me in the attending doctor saw me and a look of fear crossed his face, as he asked what I was doing there. I guess he thought there was going to be more drama in the ER. I quickly told him not to panic, it wasn't a brain issue. X-rays confirmed a right broken foot and a badly sprained left foot and jammed toes. They thought I should stay the night but I wasn't biting on that one and told them I was going home. Now for the GOOD NEWS!
Yesterday I had a checkup with my neurosurgeon, Dr. Mark Kotapka. I had an MRI done a month ago and after reviewing them he exclaimed, "Your brain is perfect." Now did I get a charge out of that. I told him he had better not say that too loud, because he could get 302'd for making that statement about me.
I was a little nervous about the outcome of the MRI, a few days before I was helping Bill hang cabinets in the garage. Not being tall enough to hold the cabinet from the side or the front, I stood underneath it. Needless to say, it got away from Bill and came down on my head. Thankfully, it didn't do any damage to my "perfect brain."
Dr. Kotapka asked me to please stay out of trouble, I let him know that I couldn't make any promises and it really wasn't likely.
I am still having a blast with my grandchildren. In fact during the never ending MRI, I kept picturing the smiles of each one of them and it made the uncomfortable feeling disappear. Our Julien is staying with us for the next several days while my daughter is in Texas for business. We have plans to bake cookies and swim and do crafts. I am so blessed.
I wish you all well and may you have many Happy Heart Days!!
Update: 10 February 2007
It is that time of year again. February 7th was the tenth anniversary of my second birthday. As usual I dealt with the Post Traumatic Stress Syndrome. For over a week I was a miserable beast. The norm is that my family tends to ignore the day and I can't help myself I have to remind them. And I get the same answers every year, "we would like to forget that time". I think next year I will send out an announcement two weeks before, it will serve two purposes: the first being a reminder and the second will alert them to be on the lookout for my beastly nature.
For some unknown reason I read part of my medical records, and still am amazed that I lived thru the ordeal. I kept screaming "I have the worst headache of my life." Now today we all know that if we hear those words chances are a bleed is happening. Someone noted that I really was not giving them very good info, when I mentioned it to my Mom she was floored, her response was, you couldn't give them any information you were for the most part incoherent.
It truly was frightening reading everything that had happened to me. The surgical reports were especially frightening, especially the part where they popped a hole in the aneurysm that produced a brisk hemorrhage, like the first hemorrhage wasn't enough. In reality I do know that I am truly blessed and that my surgeon is the best.
Yesterday my daughter called and was very upset. A colleague at a different branch suffered a rupture on the 7th and died. She was 24 years old. That call was proof that I was so blessed.
A friend of ours father and brother died from aneurysm ruptures, I have begged him to be screened. We saw him tonight and he told me that he is now making arrangements to have his doctor order the MRI. Praise God, he finally got the message.
As always I am having a blast with my grandbabies. Mikey, Julien and Nikolai have a new mission in their lives. It appears that they have a contest going to see who can torment me the most, during the football season Mikey calls to tell me that my Eagles are going to lose. On Christmas Day as he was leaving he made a smart remark that his Cowboys would have 374 yards rushing, I chased him thru the entire house. Well, when his Cowboys lost I left him a message asking what happened to his Cowgirls, did they choke? Nikolai wants to tackle me whenever I walk in the door and Julien never quits, his new thing is as he walks in the door, "woman, are you sitting on your leg again?" And then he plops down on my lap. And now my Jess is dating, I can't believe she is in high school now! I love every minute with them and all of the others.
I wish you all Happy Heart Days!
Update: 4 June 2007
I wanted to update the family on a project I refuse to give up on, BRAIN INJURY AWARENESS. Today (May 30, 2007) I met with PA State Senator Connie Williams. I wrote up a booklet on aneurysms and AVMS. I did several pages of pictures of our family (thanks to all who sent them) some living, some passed. On the page directly in front of the pictures were the words, DEAD OR ALIVE? ARE THEY YOUR CONSTITUENTS? What an eye opener. The following is the first page of the booklet.
What do Arlen Specter and Joseph Biden
have in common? ANEURYSMS!
What they really have in common is that they do nothing to promote brain injury awareness. Are they afraid of looking brain damaged?
Do they realize that they are doing a disservice to the world at large but also to their own families. Aneurysms are now seen to have a genetic factor and the jury is still out on AVMs.
Their voices could be heard loud and clear but we don't hear them. SHAME ON THEM.
We have worn our bald heads as badges of courage. The dents and scars are battle wounds. We know what a silent killer is. Ruptured aneurysms and AVMs can kill. If they don't kill they can steal brain function, vision, use of limbs. They destroy serotonin levels creating havoc with our systems.
We will never give up. We will be there lifting up our fellow survivors and wiping the tears of the families who have lost their loved one. We will cry together when the call comes that another one of us has lost the battle.
I think we have someone on our side. Connie and her staff could not have been more gracious and willing to help. She said we could proclaim a week or even a month for BRAIN INJURY AWARENESS, that in itself will get us some media attention. She also invited us to be a part of a Senior Expo to be held in October. She also asked to get her as much info on children with Aneurysm and AVMS. YAHOO for Connie Williams!
What a difference from the last politician I met with...POMPOUS FOOL! This just goes to show NEVER GIVE UP, we can and will make a difference.
God Bless us all, each and every one of us!!
Update: 7 October 2007
Yesterday (Oct 5), I worked at a Senior Expo hosted by PA State Senator Connie Williams. I worked along side of Peter Cornelis of HOPE FOR STROKE. It was a great day and we met so many nice people. One woman approached me and told me her 30 year old daughter had an aneurysm that was discovered before it ruptured. She may be another new member of our family.
It never ceases to amaze me how often I run into a survivor or a family member of aneurysms or avms.
Once again I must thank Connie Williams she really is a champion for so many people. She is a gracious, caring lady who wants to know more about the plight of our family.
Update: 2 August 2009
Well, a lot has happened since my last update. Bill Maples has passed and I still miss him so much. There are days I wish for his guidance and just a little of his knowledge ( he was the smartest man I've ever known). We, as a family have kept Bill's dream alive.
Personally, I have had very few issues. Of course, me being a klutz, had another fall. What really made me nuts was that it was a repeat performance. same place and same injuries. I am very grateful, the injuries were not as serious as the last fall and I was only off my feet for about 10 days. One thing I will reiterate is that when you go to the hospital please be careful of what medications they give you or prescribe. I had reviewed my allergies with the triage nurse, when I was discharged they told me to take 800mg. of Motrin. I am ALLERGIC to that and it was on my chart! This is the second time this happened, although the first time they handed me Motrin and I asked what it was. Hospitals need to be much more careful when prescribing drugs, we need to be on our toes or at least have someone with us who can step in and give the right info and ask the right questions.
On two different occasions I had visual seizures. It was very strange, red and black zigzag lines in my peripheral vision. It lasted only a couple of minutes but it made me uncomfortable. I was concerned that I would have a full fledged seizure ( I've never had a seizure) or the headache from hell was on the horizon. Thankfully neither occurred. I did see my neurologist and she asked if had taken my blood pressure. I had not. She feels that may have something to do with it. If it occurs again, I am supposed to get in touch with her.
The only other problem I have been dealing with is sudden fatigue. Out of nowhere it hits and I have to lie down and sleep for an hour or two. Anyone who knows me knows that I don't sleep a lot so when that happens it is frightening. It started around Christmas and continues to be an issue, with the last episode happening tonight.
Now the good things. My daughter Leslie and grandson Julien spent a month with Bill and I and while they were here two of my other grandsons Mikey and Nikolai stayed also. The boys just love being together. My house was a zoo but it sure was fun. My grandsons love tormenting me and it goes on all day and all night. We sang and laughed all of the time. I even tried teaching them some old Italian folk songs. Nikolai who is 9 wanted to know how I knew all of those words. Today they all went home and it sure is quiet here..:(
Jim and Val Craft continue to visit. They were here a couple of weeks ago and as always we enjoy our time together. It also gives Jim and I some time to work on the site together. There aren't many days that go by without Jim and I speaking at least once a day on the phone.
I chat with Pat Maples at least three times a week and I keep her up to date on our family. She is thrilled that we are all still together. She became a Grandmom again. Bill and Pat's son John and his wife Julie had a little girl on July 25th. Her name is Larissa. I understand her big sister Leah is thrilled. I will be visiting Pat in September.
In closing, I would like to thank all of you for being a huge part of my life.
Update: 7 February 2010
Well, it's that day again. It has been 13 years since I experienced my very own Pivotal Moment. This year has been much easier, not so much doom and gloom. The "visual seizures" have occurred a few more times. We have narrowed it down to "stress". So not sweating the small stuff is my daily mantra.
I did visit Pat Maples in September and she is doing very well. She had cataract surgery and recovered beautifully. You should hear her brag about those grandbabies.
My grandbabies are the loves of my life (that is when they are not tormenting me). Each one of my grandsons lets me know that he is my favorite grandson. Each one of them is, in their very own way. Leslie and Julien will be moving back to PA this summer and Julien has already put in his request for his homecoming dinner. My daughter asked if he thought I should arrange a parade for them and his response was, "I think Nona can arrange that". I can't wait for them to get home but there will be no parade. I think Bill became a little worried that a parade was in the works.
Thank you all for being a part of my family. It is my pleasure and honor to know all of you.
Update: 7 February 2011
Today marks the fourteenth anniversary of my Brain Day . I didn't suffer with the doom and gloom feeling and that's a good thing.
The Real Estate Co. I worked at for the last thirteen years closed. There was a merge with a very large firm. Very Corporate America. I lasted one week and decided to move my license to Century 21 Alliance In Blue Bell. I really think this is a much nicer fit. Much smaller office and more family oriented.
My health has been very good other than my right hip that has taken on a life all it's own. It locks up and then my leg just stops. It was the cause of me falling off a ladder while decorating for Christmas. Nothing hurt but my pride.
My grandkids are still the lights in my life. Julien and Leslie moved back to PA and that made my heart sing. Leslie met a very nice man and "John" is now my other son. My boys just thrive on tormenting me and my girls are so sweet and funny. If only I could get them all here for the next snow storm, I might not have to shovel.
Once again, I want to thank all of you for being part of my life. Jim ,as always, is such a valuable colleague. We know that the other one is always there for a reality check. Please help us keep Bill Maples's dream alive. Keep sending in your updates and questions. Thank you for supporting each other. Sometimes that little email may be just what a member needs to get through the day.
God Bless All of YOU!
Update: 7 February 2012
It's hard to believe but I am celebrating my 15th Brain Day. Sometimes it seems like yesterday and other times it seems that it was lifetime ago.
The past twelve months have been trying to say the least. We lost four family members, my uncle and three cousins and several friends.
My Mother suffered two brain bleeds in April caused by an overdose of Commudin. I wasn't sure that she would get through surgery but I should have known better! My 84 year old Mother is one tough cookie. She spent 49 days in the hospital and rehab. She had two surgeries and thankfully Dr. Mark Kotapka was her surgeon. How I love that man! Mom's rehab was at Moss Rehab and I can't say enough good about this institution. They were so good to Mom, they were kind and loving and their therapies proved invaluable. When I would leave at night I was comfortable knowing she was so well cared for. Mom's stay in the hospital was trying to say the least. They discharged her basically from Intensive care to rehab. They have a discharge team that was determined to try my patience. I learned two things about this procedure, they must give you 48 hours notice prior to discharge and that if a patient can not do three to four hours of therapy and show progress, the insurance company can stop payment. I finally had to get down and dirty and threaten the team with dialing 911 and have them charged with kidnapping and then dialing the Phila Inquirer and Channel 6 Action News who would love this story. I won and got Mom another 72 hours. I then created the page Crash Course For Doctors and Medical Personnel Treating A Patient With a Brain Injury. Please take a look at it. The more hits we have on this page may help it become part of the training of the medical profession. By the way, Mom recovered and she is probably 90% back to her old self although she is still angry about not driving. When she got home she made appointments with her previous doctors. I asked her why as we got her new doctors. Matter of factly she answered, " I want them to have to look at me". Go Mom!
And the final challenge, a few months ago I started feeling lousy. My daughter was visiting and took a look at the rash on my face and said, "Mom, you have Lupus." I told her she was crazy and I didn't remember paying for her MD. I was in complete denial, that is until the symptoms couldn't be ignored. The rash got worse as did my joints and the fatigue set in. I had to rest several times a day and then it got to be everytime I did anything. I went to my primary and she immediately leaned towards Lupus. She ordered blood test. She also referred me to a dermatologist and a rheumatologist. The dermatologist was fairly certain it was Lupus and did a biopsy. The blood work was positive and the biopsy was negative. Then I saw the rheumatologist. She wasn't sure and ordered more blood work, that came back positive. She spoke with the dermatologist and they decided that the biopsy was taken from the skin near my hairline not where the rash was raging. They did concur that I do have Lupus and immediately put me on an anti malaria drug and a steroid lotion for my face. The lotion has already started to work. The drug can take 4-12 weeks before it takes hold. I know that I can deal with this. It might take me a while to retrain my Type A brain. I will learn that there is a limit to what I can accomplish on any one day. I have made some strides, I have already said "I'm sorry, I can't do that right now I need to rest awhile." And believe it or not the world didn't come to an end.
I am researching Lupus and any correlation to cerebral vascular events.
Well, there have been good things too!! My granddaughter Jess joined the National Guard and just finished her basic training. Julien has been invited to the Junior Leadership Conference in Washington DC and Mikey has been invited to visit Annapolis and Georgetown (he is only a sophomore). Nikolai, Jenny, Nicole, Lindsey, Connor and Will are doing beautifully in school and in sports. They know that school is first or they answer not only to their parents but to me too.
All in all Life is good and will continue to get better.
God bless all of you and remember you are loved.
Update: 3 June 2012
Susan Spera Weinholtz passed away peacefully on Saturday April 7, 2012, she was 60 years old. Susan was a graduate of Bishop Kenrick High School class of 1969. She served the community as a Realator for the last 31 years.
After surviving a brain aneurysm in 1997, Susan dedicated herself to the Aneurysm & AVM Support group and later became the group's lead advocate for several years. Susan was the author of two published books entitled Chronicles of a Heart and Time for Uncle Guido.
Susan was a good cook and enjoyed crocheting, making jewelry, hosting family and friends. She will be remembered as a loving and devoted wife, mother, grandmother, daughter, sister and aunt and will be dearly missed.
Susan's death was so very sudden and unexpected. After her diagnoses of cancer; Susan and her doctors were proceeding with arranging the dates of treatments along with her transportation to each one. She had received her first Gamma Knife treatment and even after only a few short weeks; her doctors told Susan that they had seen some shrinkage of her brain tumor. Her doctors also reported that her lung tumor was smaller than originally reported. Everything was set for Susan's biggest battle. Susan's death was not a result of Aneurysm; The plague; known as cancer, took our Sister from us
Anais Nin noted "People living deeply have no fear of death" Susan Spera Weinholtz's life journey inspires us. She chose to live her life fully, and deeply, embracing the challenges life dealt her with courage, intelligence and insight. Family was first and foremost with Susan...a loving wife, mother, daughter, sister, aunt, niece, nona , mother-in- law and cousin. Mike and Leslie knew that on their birthday they could not only count on Susan preparing their favorite meal and cake, but they could also count on getting a birthday phone call from their mom at the time of their birth...Mike at a few minutes after midnight and Leslie at 0 dark thirty. When Susan and Bill married, her family expanded...She delighted in her additional family- eight more children and lot of grandbabies. As you may know, Susan was a night owl. Mikey, Nickolai and Julian live sleeping over at Nonas- there was no bedtime. It was typical for Susan to burn the late night oil to watch a movie with the grandbabies, console a friend over the phone, craft jewelry for loved ones, or crochet a prayer shawl for a sick friend. Susan loved holidays. In addition to procuring the perfect gift for each member of the family, making Kahlua kisses because one of the kids loved them, she also loved decorating her home for the holidays. She is the ONLY person I know who hung shamrock curtains for St. Patrick's Day. On a more serious note, we know that God had some sort of plan for Susan. She entered our world on the eve of the birth of Christ and died on the eve of Christ's resurrection...In between, she lived every minute of every day touching everyone she met. Susan truly believed in treating her friends like family. Her beautiful smile and caring words attracted people to her. Her real estate customers and clients became her friends, using her services to purchase their first home, their second home and more recently for their children's homes. The eight children Bill brought to Susan took great comfort knowing that in addition to making their dad happy, Susan also made sure he took his medicine properly, and kept up with the doctor's appointments. Her high school girlfriends will miss her dearly, she was like glue keeping them together. Susan rebounded from her brain aneurism and two brain surgeries with incredible strength. Knowing she had been blessed to regain all of her faculties so quickly, she used her knowledge and experience to help others. The family was blessed to have Susan as our resource when her mom suffered a brain bleed just last year. She pushed, prodded and guided Aunt Clare's recovery. As the webmaster for the Aneurism and AVM Support Website, people from all over the world were touched by Susan. She knew them, she advocated for them, inspired them, educated them and became their friend. She reached out and inspired confidence and infused love to so many suffering from the devastating effects of Aneurisms or AVM. Susan's incredible command of the spoken and written word was appreciated by all who knew her. Her ability to "put things into proper perspective" or as others have put it, "to let you know exactly where you stand" is surpassed by very few people. I hope you can share my vision of Susan gathered at the eternal table holding court with those she hasn't seen in a while. Take comfort in knowing that she will be waiting for us with open arms and open heart.
note by Jim Craft
This final update has been a personal challenge for me and long overdue. In constructing this update I've had to "come to terms" with loosing my best friend. Along with me; every member of this Support Group will forever remember Susan in our hearts as... Our protector "Aunt Guida", our inspiration for recovery", and our " shoulder" to rest our head; when we were weary and in need of a shoulder to cry on. I can remember when I first met Susan; it was at the home of Bill and Pat Maple's. Bill called Susan his "DAGO TURKEY", she snared back at him and said; "HEAD TURKEY". I thought to myself; these folks must know each other well. They did; they respected and loved each other with all their heart. I knew then I'd found a home of loving people. Susan was no "Dago", she became our mother "HEN" when Bill passed away. In my heart; I know those two "TURKEYS" have gotten their wings in heaven and keeping watch over their flock. Good bye my dear friend and REST IN PEACE, Susan, REST IN PEACE.
© Copyright 1999 Susan
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