It was at a time in my life when things finally felt stable. I had three beautiful wonderful kids, that were my life. I had a great husband. He worked, I stayed at home with the kids and was a Brownie leader and a volunteer at my oldest daughter's school. Everything was perfect.
My husband and I were avid campers. My in laws had a cabin up in Northern Wisconsin. We would go for weekends every chance we would get. I know what you are all thinking, this is where you got Lyme? But I don't think so actually, but of course who knows, you never really know.
How It All Started
My Son Has a Seizure
Then not too long after that my son, who was about four years old, was laying on my lap while we were watching tv. I remember he was being silly smiling at me and playing one moment. Then the next I looked down and to my horror he was blue. His eyes were rolled back in his head and he started shaking. My son was born with heart problems and my first instinct was that something was happening in his heart. I was only about 23 and had no experience with anything medical at this point. I called 911 and thought he wasn't breathing because he was blue. I remember trying to do CPR on him, not breathing into him but pushing down on his chest. I'm lucky I didn't hurt him further. I was so naive back then. I had never seen a seizure up to this point. Little did I know it would be one of many.
He was taken to the hospital where he was diagnosed with "febrile seizures." I didn't question it any further. I thought wow he has a condition called, "Febrile Seizures." I didn't know then that this was just a label for what happened, not the CAUSE of what happened. The one thing that confused me though was the doctor had told me that usually babies have them, and by the time the child was four they would have outgrown them.That lingered in my head. Why did my child who was four, just start having them when other kids now have outgrown them? The dr told me it was caused by an underdeveloped central nervous system. But why would this present itself when my son was four years old?
He was given antibiotics and that was that. But throughout the year Matt would wake up screaming. He would scream so loud I would hear it from my bedroom and go running in there to see what happened. He would be laying on his bottom bunk saying, "My leg hurts." On further inspection I would find a very swollen ankle. I would ask my daughter, "Did you hear him fall out of bed?" And she would reply, "No."
How can some someone wake up with a big swollen ankle when nothing happened? I rushed him numerous times to the Emergency Room trying to find answers. The xrays would show nothing. The ER docs would just dismiss it as he must of slept walked and hurt it somehow.
Then he started falling a lot. He would walk into tables and hit his head on everything. Again, many trips to
the ER only to show everything normal on tests. He had to get stitches several times. Then the delays began in his deveolopment, he started talking when he was only ten months old. Now he was four and stopped. He couldn't say words right and he became totally glued to my side. Didn't want to go to pre kindergarten classes I put him in and coulnd't even say his sister's names properly. Never were there any answers for any of this.
Stressers for Me
In the meanwhile I was having some female issues of my own. I found another lump in my breast, again. I had a pap smear come back pre cancer. And, my doctor was encouraging me to get my tubes tied. We set up three surgeries/procedures to be done this month. I had my tubes tied. I had a super hard time with the pain of this. I was told it was an out patient surgery and would be simple. I had so much pain and was nauseous for days. Then I had a cervical coninization, which I had anethesia again, nauesous again. I had to have a lumpectomy, this time while awake since i had a hard time with getting anethesia my three prior surgeries. It was a strange experience. They numbed my breast up with Novacaine, but I could still feel the insicion. He told me it was normal to feel "his fingers moving around in there, but I shouldn't have pain." I told him I could definitly feel pain. I felt blood drip down my side and I told the doctors and nurses surrounding the table that I was going to faint. He called me silly and said I could not faint while I was laying down. I fainted. When I woke up, to those nasty smelling salts, he jolkingly said, 'you were right! You fainted."
My blood pressure seemed to be an issues dropping too low at points of this surgery. It was an outpatient surgery and a couple hours later after my blood pressure was stabalized, and I was all bandaged up. I was sent home.
Later that night...
My Youngest Daughter has a Seizure
I was sitting at home with my kids. I remember getting up to feed the fish and when I turned around I didn't
see my one year old daughter. She had chicken pox. I walked around the house looking for her, finding her having a seizure in a laundry pile by the washing machine. Not again, not my daughter now, not a seizure. I hate seizures.
My daughter was put into the ambulance where I saw them shoving a tube down her throat. I was trying to look throught the window and an ambulance driver came out and held me back saying I need to prepare for the worst. He said they were trying to suction out her airway and blood was coming up. I thought I was going to faint, what was happening to my baby?
I drove in the front seat of the ambulance to the hospital not knowing what was going on in the back. When we got to the hospital a good twenty minutes away she was still seizing. They put her in a room and laid her on a table that was surrounded with ice or ice packs. They did a spinal tap. By now my husband had arrived and I remember him almost fainting and him crying, what was happening to his daughter?
The spinal tap came back normal. We spent the night in the hospital. I had to ask a nurse to help me change all my bandaging from my surgery that I had had earlier that day. I remember her helping me it the bathroom and in that moment feelings like my life was falling apart. We were all sick. A month ago, besides my sons heart issues we had been generally healthy, but now a month later 4 out of the 5 of us were sick with varying ailments. Two now with febrile seizures.
The next morning the doctor came in to talk to me. Again, the diagnosis was "febrile seizures." Wow, now
it's starting to worry me, Was there poison somewhere in my house the kids were getting a hold of? Did we have some weird virus that causes seizures and fevers? What was going on?
Over the next several years my two youngest kids had fevers and seizures and were in and out of the hospital and dr offices. They were on antibiotics most of their young life.
I was told my son had to have Open Heart Surgery
When my son was born, he was born with four holes in his heart. All but three closed up on their own by the time he was four. But the one that didn't was in a bad place, under his aortic valve causing too much pressure on his valve and an enlarged heart. His cardiologist thought he needed open heart surgery to repair the VSD (ventricular septal defect).
A couple days later...
My First Symptom~ Panic Attack
One day my friend and I decided to go to Hawthorne Mall for a break. I remember, and I know I sound like the worst mother ever, but I remember my daughter had thrown up that morning. My friend said, we should cancel and I just said, I NEED to get out. I want to go shopping, I want to walk around somewhere that is not my house watching over sick kids. (Not my finest moment but being brutally honest here.) We went, my daughter was fine but this is what happened next. Maybe my first Lyme symptom.
We were walking through the mall talking and giggling like old friends do. We had been best friends since 5th grade. And all of a sudden my heart started beating weird. I didn't feel right. I got dizzy and felt like I was having a heart attack. I don't remember if we called and ambulance or if my friend drove me to the hospital. But I remember getting all the routine heart tests and everything coming back normal.I still didin't feel right, but they said it was stress from learning my son had to have open heart surgery, my kids having seizures, and all of my surgeries. I had my first "Panic attack."
My Son has Open Heart Surgery
My son had open heart surgery, at four years old. Everything went wrong. He had a VSD, ventricular septal
defect, and had been born with four holes in his heart. 3 had closed on their own but the one in the bad spot under his aortic valve didn't. Leading to regurgiation of the blood and an enlarged heart. So he underwent heart surgery to close the hole. The cardiologist had told me they were going to use a pig skin patch to close the hole, but when they went in, he said the hole was smaller then he through it was and he decided to just stitch it up instead.
While he was recovering in the pediactric ICU, it seemed like everything went wrong. He was paralyzed with meds so that he wouldn't pull out the repirator tubes. Imagine being awake but paralyzed? It was so hard to watch. I remember begging them to give him more meds because I would see him start moving, and I would say he needs more! I didn't want him to wake up in pain with tubes ticking out of every orifice. So I would say, please give him more meds ot knock him out! And they would. I had NO idea, he was really conscious, just coulnd't move. I feel like I tortured him. Guilt, total guilt.
Every once in awhile the nurses would come over to suction out his intubation tube. Once when the nurse turned on the suction machine and the noise blared out, tears rolled down hmy son's cheek. He coulnd't move, he couldn't physically react, but he was aware and knew what torture was coming. He was crying but paralyzed. I will never get that image out of my head. NEVER. The nurse and me stood there and cried.
Different things happened, like all his veins collapsing and they coudn't get ivs in anywhere. The cardioloist would turn off the lights and try to use a purple light to find new veins, poking him again and again for several minutes. He had ivs in his ear and in his foot, the only two places left he could find one. Also one time I noticed he wasn't breathing in and out, even though he was on a respirator. The oxygen alarms starting ringing and the nurses rushed over. His tube had slipped out of his lungs and into his stomach filling his stomach with air. There we many incidences like this.
When they gave him antibiotics through his iv he would break out in hives. One day the doctor said to me, it's wierd, he doesn't have breathing troubles when we give him anitibiotics, just hives. Looking back I wonder if he was having a herxheimer reaction and not an allergic reaction? So anyways, my son was on a quite the course of iv antibiotics for a couple weeks.
One day the nurse came into his room and accidentally let something slip. She said to me, "I'm sorry the stitches came out of the repair on your son's heart." I was like what are you talking about? And she said, oh the doctor hasn't talked to you yet? I said, no. The doctor came in and I freaked out. Yelling I want to know everything going on! He said he was worried how I'd react so he decided not to tell me. How can he even have that choice? I told him, I am Matthew's mom. I want to know if his fingernail breaks!! Little lone about the stitches coming out of his heart after all this! He had known for days and hid it from me. He was covering himself as to not get sued I'm sure.
He eventually recovered from that surgery, albeit still with a hole in his heart, and was sent home. It's funny how the condescending doctor would assure me nothing major would ever happen because of the hole still being there. Apparently it was serious enough to do open heart sugery in the first place, I mean he had told me my son would grow weaker and eventually end up blue from lack of oxygen and in a wheelchair from weakness, but now everything would be just dandy and I wasn't to worry about it. He released Matt and sent us home.
I am horrible at "time." I don't know if something happened last week or a month ago. But I do remember that my daughter got Cat Scratch Fever, my son had his first seizure, I had my first panic attack and then my daughter had her first seizure all within maybe a month. That year my son had open heart surgery.
My Continued Symptoms
I continued having "panic attacks." Sometimes I would get them once a day but usually it would be more like an all day adventure. I would wake up, get the kids off to school, take care of my daughter who was a toddler. Pray that noone got any fevers or had any seizures. And then my anxiety would start. Usually I'd just be sitting there with my youngest daughter, nothing unusual happening and then bam, my heart would start beating funny. It would come out of the blue. I tried learning about panic attacks, but there didn't seem to be any triggers, like what my doctors and the counselor I was now seeing told me. They were just out of the blue. Even at night I'd wake up from dead sleep with my heart racing. I felt like I was going crazy, There had to be something wrong with my heart!
I just kept going back again and again to the Emergency Room. My poor husband and family was so patient with me. How can my heart not feel right anymore and nothing be wrong? I was sure they were missing something. Soon my anxiety got so bad I would only leave the house to go to the ER, which sometimes I would visit several times a day.
Once I went there and the ER dr said, "Look, you are not physically ill, we cannot find anything." I told him then put me in the psych ward because I'm going crazy.
The psychiatric ward was on the other side of the hospital. I checked myself in. All I could think, was that I was dying. I was obsessed with the fact that I was dying. I got all checked in, talked to a psychiatrist. Spent the night and went to one group therapy session. By that afternoon the doctor called me back into his office and said, "You are not mentally ill. We believe there is something physically wrong that they have not figured out yet." And I was released. I had nowhere to turn anymore.
I went home and that's when the agorophobia started. I didn't want to ever leave my house. I would go under the covers and just not come out, only to make my kids meals. I didn't want my husband to touch me, I didn't want to do anything, No more camping trips, no more grocery shopping. I quit being a Brownie leader and a school volunteer. I couldn't explain what was wrong with me anymore. I had started getting terrible stomach pain. I felt like there was a hole being burned into my stomach. All tests came back normal. I started feeling, what I have termed, "poisoned." Like nothing felt right in my whole body. It almost felt like having a fever and a hangover, all the time.
At one point I went to the ER again and they actually admitted me. They called my family doctor who came in to examine me and he said, "You are sick but we don't know why." He ordered more heart tests. At this point my doctor told me I have possible Mitral Valve Prolapse. But he said "possible" like he wasn't totally committing. I wanted definite answers. I felt like I was dying and everyone was just ignoring me. He said the ultrasound of my heart showed that my heart was healthy, other then the MVP but that it showed that I had a strong pressure in my vessels. He said it was equivelent to what a man has.. I, to this day, don't know what that means. He just said, "If I was you and had that much pressure, I'd feel my heart beating too."
They admitted me to the hospital and put my on ivs for dehydration. Honestly that's all I remember of that. I don't know how long I was there or what they did while I was there. It's almost like my first memory lapse.
I do know they put me on a lot of different meds. As usual, I had strong reactions to everything. Nothing ever worked at calming my anxiety, they only made it worse in fact. At one doctor appointment my doctor asked me why I was on a certain med. I explained it was one they had prescribed for me at the ER. He said, "Did you know that this is what they give people during surgical procedures or dental appointments, so that they don't remember any of it?" I don't recall what that med was, but I also didn't remember the whole prior week. Just bits and pieces of it. I stopped taking all drugs.
We Bought our First House
Everything, other then the mysterious illness that now plagued my family, everyone other then my husband, was going good. We decied to buy our first house in Ingleside, Illinois. A town over from where we were living when we pulled the tick out of my daughter's head. My kids kept having seizures. I lost count of how many or how often. It became common place for my son to wake up screaming with ankle pain, or my kids to have random fevers that would turn into seizures. I learned how to made a bath at the right temp so that I could put their little bodies in there to cool them down until they stopped seizing. I could almost predict them.
He was taken to the hospital where he was diagnosed with "febrile seizures." I didn't question it any further. I thought wow he has a condition called, "Febrile Seizures." I didn't know then that this was just a label for what happened, not the CAUSE of what happened. The one thing that confused me though was the doctor had told me that usually babies have them, and by the time the child was four they would have outgrown them.That lingered in my head. Why did my child who was four, just start having them when other kids now have outgrown them? The dr told me it was caused by an underdeveloped central nervous system. But why would this present itself when my son was four years old?
He was given antibiotics and that was that. But throughout the year Matt would wake up screaming. He would scream so loud I would hear it from my bedroom and go running in there to see what happened. He would be laying on his bottom bunk saying, "My leg hurts." On further inspection I would find a very swollen ankle. I would ask my daughter, "Did you hear him fall out of bed?" And she would reply, "No."How can some someone wake up with a big swollen ankle when nothing happened? I rushed him numerous times to the Emergency Room trying to find answers. The xrays would show nothing. The ER docs would just dismiss it as he must of slept walked and hurt it somehow.
Then he started falling a lot. He would walk into tables and hit his head on everything. Again, many trips to
the ER only to show everything normal on tests. He had to get stitches several times. Then the delays began in his deveolopment, he started talking when he was only ten months old. Now he was four and stopped. He couldn't say words right and he became totally glued to my side. Didn't want to go to pre kindergarten classes I put him in and coulnd't even say his sister's names properly. Never were there any answers for any of this.
Stressers for Me
In the meanwhile I was having some female issues of my own. I found another lump in my breast, again. I had a pap smear come back pre cancer. And, my doctor was encouraging me to get my tubes tied. We set up three surgeries/procedures to be done this month. I had my tubes tied. I had a super hard time with the pain of this. I was told it was an out patient surgery and would be simple. I had so much pain and was nauseous for days. Then I had a cervical coninization, which I had anethesia again, nauesous again. I had to have a lumpectomy, this time while awake since i had a hard time with getting anethesia my three prior surgeries. It was a strange experience. They numbed my breast up with Novacaine, but I could still feel the insicion. He told me it was normal to feel "his fingers moving around in there, but I shouldn't have pain." I told him I could definitly feel pain. I felt blood drip down my side and I told the doctors and nurses surrounding the table that I was going to faint. He called me silly and said I could not faint while I was laying down. I fainted. When I woke up, to those nasty smelling salts, he jolkingly said, 'you were right! You fainted."
My blood pressure seemed to be an issues dropping too low at points of this surgery. It was an outpatient surgery and a couple hours later after my blood pressure was stabalized, and I was all bandaged up. I was sent home.
Later that night...
My Youngest Daughter has a Seizure
I was sitting at home with my kids. I remember getting up to feed the fish and when I turned around I didn't
My daughter was put into the ambulance where I saw them shoving a tube down her throat. I was trying to look throught the window and an ambulance driver came out and held me back saying I need to prepare for the worst. He said they were trying to suction out her airway and blood was coming up. I thought I was going to faint, what was happening to my baby?
I drove in the front seat of the ambulance to the hospital not knowing what was going on in the back. When we got to the hospital a good twenty minutes away she was still seizing. They put her in a room and laid her on a table that was surrounded with ice or ice packs. They did a spinal tap. By now my husband had arrived and I remember him almost fainting and him crying, what was happening to his daughter?
The spinal tap came back normal. We spent the night in the hospital. I had to ask a nurse to help me change all my bandaging from my surgery that I had had earlier that day. I remember her helping me it the bathroom and in that moment feelings like my life was falling apart. We were all sick. A month ago, besides my sons heart issues we had been generally healthy, but now a month later 4 out of the 5 of us were sick with varying ailments. Two now with febrile seizures.
The next morning the doctor came in to talk to me. Again, the diagnosis was "febrile seizures." Wow, now it's starting to worry me, Was there poison somewhere in my house the kids were getting a hold of? Did we have some weird virus that causes seizures and fevers? What was going on?
Over the next several years my two youngest kids had fevers and seizures and were in and out of the hospital and dr offices. They were on antibiotics most of their young life.
I was told my son had to have Open Heart Surgery
When my son was born, he was born with four holes in his heart. All but three closed up on their own by the time he was four. But the one that didn't was in a bad place, under his aortic valve causing too much pressure on his valve and an enlarged heart. His cardiologist thought he needed open heart surgery to repair the VSD (ventricular septal defect).
A couple days later...
My First Symptom~ Panic Attack
One day my friend and I decided to go to Hawthorne Mall for a break. I remember, and I know I sound like the worst mother ever, but I remember my daughter had thrown up that morning. My friend said, we should cancel and I just said, I NEED to get out. I want to go shopping, I want to walk around somewhere that is not my house watching over sick kids. (Not my finest moment but being brutally honest here.) We went, my daughter was fine but this is what happened next. Maybe my first Lyme symptom.
We were walking through the mall talking and giggling like old friends do. We had been best friends since 5th grade. And all of a sudden my heart started beating weird. I didn't feel right. I got dizzy and felt like I was having a heart attack. I don't remember if we called and ambulance or if my friend drove me to the hospital. But I remember getting all the routine heart tests and everything coming back normal.I still didin't feel right, but they said it was stress from learning my son had to have open heart surgery, my kids having seizures, and all of my surgeries. I had my first "Panic attack."
My Son has Open Heart Surgery
My son had open heart surgery, at four years old. Everything went wrong. He had a VSD, ventricular septal
 |
| Matthew waiting for his open heart surgery. |
While he was recovering in the pediactric ICU, it seemed like everything went wrong. He was paralyzed with meds so that he wouldn't pull out the repirator tubes. Imagine being awake but paralyzed? It was so hard to watch. I remember begging them to give him more meds because I would see him start moving, and I would say he needs more! I didn't want him to wake up in pain with tubes ticking out of every orifice. So I would say, please give him more meds ot knock him out! And they would. I had NO idea, he was really conscious, just coulnd't move. I feel like I tortured him. Guilt, total guilt.
Every once in awhile the nurses would come over to suction out his intubation tube. Once when the nurse turned on the suction machine and the noise blared out, tears rolled down hmy son's cheek. He coulnd't move, he couldn't physically react, but he was aware and knew what torture was coming. He was crying but paralyzed. I will never get that image out of my head. NEVER. The nurse and me stood there and cried.
Different things happened, like all his veins collapsing and they coudn't get ivs in anywhere. The cardioloist would turn off the lights and try to use a purple light to find new veins, poking him again and again for several minutes. He had ivs in his ear and in his foot, the only two places left he could find one. Also one time I noticed he wasn't breathing in and out, even though he was on a respirator. The oxygen alarms starting ringing and the nurses rushed over. His tube had slipped out of his lungs and into his stomach filling his stomach with air. There we many incidences like this.
When they gave him antibiotics through his iv he would break out in hives. One day the doctor said to me, it's wierd, he doesn't have breathing troubles when we give him anitibiotics, just hives. Looking back I wonder if he was having a herxheimer reaction and not an allergic reaction? So anyways, my son was on a quite the course of iv antibiotics for a couple weeks.
One day the nurse came into his room and accidentally let something slip. She said to me, "I'm sorry the stitches came out of the repair on your son's heart." I was like what are you talking about? And she said, oh the doctor hasn't talked to you yet? I said, no. The doctor came in and I freaked out. Yelling I want to know everything going on! He said he was worried how I'd react so he decided not to tell me. How can he even have that choice? I told him, I am Matthew's mom. I want to know if his fingernail breaks!! Little lone about the stitches coming out of his heart after all this! He had known for days and hid it from me. He was covering himself as to not get sued I'm sure.
He eventually recovered from that surgery, albeit still with a hole in his heart, and was sent home. It's funny how the condescending doctor would assure me nothing major would ever happen because of the hole still being there. Apparently it was serious enough to do open heart sugery in the first place, I mean he had told me my son would grow weaker and eventually end up blue from lack of oxygen and in a wheelchair from weakness, but now everything would be just dandy and I wasn't to worry about it. He released Matt and sent us home.
I am horrible at "time." I don't know if something happened last week or a month ago. But I do remember that my daughter got Cat Scratch Fever, my son had his first seizure, I had my first panic attack and then my daughter had her first seizure all within maybe a month. That year my son had open heart surgery.
My Continued Symptoms
I continued having "panic attacks." Sometimes I would get them once a day but usually it would be more like an all day adventure. I would wake up, get the kids off to school, take care of my daughter who was a toddler. Pray that noone got any fevers or had any seizures. And then my anxiety would start. Usually I'd just be sitting there with my youngest daughter, nothing unusual happening and then bam, my heart would start beating funny. It would come out of the blue. I tried learning about panic attacks, but there didn't seem to be any triggers, like what my doctors and the counselor I was now seeing told me. They were just out of the blue. Even at night I'd wake up from dead sleep with my heart racing. I felt like I was going crazy, There had to be something wrong with my heart!
I just kept going back again and again to the Emergency Room. My poor husband and family was so patient with me. How can my heart not feel right anymore and nothing be wrong? I was sure they were missing something. Soon my anxiety got so bad I would only leave the house to go to the ER, which sometimes I would visit several times a day.
Once I went there and the ER dr said, "Look, you are not physically ill, we cannot find anything." I told him then put me in the psych ward because I'm going crazy.
The psychiatric ward was on the other side of the hospital. I checked myself in. All I could think, was that I was dying. I was obsessed with the fact that I was dying. I got all checked in, talked to a psychiatrist. Spent the night and went to one group therapy session. By that afternoon the doctor called me back into his office and said, "You are not mentally ill. We believe there is something physically wrong that they have not figured out yet." And I was released. I had nowhere to turn anymore.
I went home and that's when the agorophobia started. I didn't want to ever leave my house. I would go under the covers and just not come out, only to make my kids meals. I didn't want my husband to touch me, I didn't want to do anything, No more camping trips, no more grocery shopping. I quit being a Brownie leader and a school volunteer. I couldn't explain what was wrong with me anymore. I had started getting terrible stomach pain. I felt like there was a hole being burned into my stomach. All tests came back normal. I started feeling, what I have termed, "poisoned." Like nothing felt right in my whole body. It almost felt like having a fever and a hangover, all the time.
At one point I went to the ER again and they actually admitted me. They called my family doctor who came in to examine me and he said, "You are sick but we don't know why." He ordered more heart tests. At this point my doctor told me I have possible Mitral Valve Prolapse. But he said "possible" like he wasn't totally committing. I wanted definite answers. I felt like I was dying and everyone was just ignoring me. He said the ultrasound of my heart showed that my heart was healthy, other then the MVP but that it showed that I had a strong pressure in my vessels. He said it was equivelent to what a man has.. I, to this day, don't know what that means. He just said, "If I was you and had that much pressure, I'd feel my heart beating too."
They admitted me to the hospital and put my on ivs for dehydration. Honestly that's all I remember of that. I don't know how long I was there or what they did while I was there. It's almost like my first memory lapse.
I do know they put me on a lot of different meds. As usual, I had strong reactions to everything. Nothing ever worked at calming my anxiety, they only made it worse in fact. At one doctor appointment my doctor asked me why I was on a certain med. I explained it was one they had prescribed for me at the ER. He said, "Did you know that this is what they give people during surgical procedures or dental appointments, so that they don't remember any of it?" I don't recall what that med was, but I also didn't remember the whole prior week. Just bits and pieces of it. I stopped taking all drugs.
We Bought our First House
Everything, other then the mysterious illness that now plagued my family, everyone other then my husband, was going good. We decied to buy our first house in Ingleside, Illinois. A town over from where we were living when we pulled the tick out of my daughter's head. My kids kept having seizures. I lost count of how many or how often. It became common place for my son to wake up screaming with ankle pain, or my kids to have random fevers that would turn into seizures. I learned how to made a bath at the right temp so that I could put their little bodies in there to cool them down until they stopped seizing. I could almost predict them.
The trouble started when our well went dry. It took months, because of the below average cold winter for the well crew to drill deep enough (we lived on top of a hill) to hit water. Those months were very scary. We had no water, it would only drip slowly from out faucets. when my kids went into seizures I didn't have the water to bathe them in to bring down their temps.
Moving to Arizona
We decided we needed a change. Maybe moving would help stop the anxiety. Maybe I just needed a brand new fresh start. It would be good for the kids and my husband and I to just start over. Maybe doctors there would know more then doctors here?
Nope, they didn't. I do believe they got closest to the answer. They diagnosed me with Desert Valley Fever and Black Widow Bites. At least they thought it was an insect. Even through I told them my illness had started years prior when I lived in Illinios and we had no Black Widows. But hey, at least they were looking, and seemed to believe me that I was sick.
Now I had other issues to deal with now though. I had doctors willing to test and try to figure this mystery out. But I had developed a big fear of meds and anethesia. I started having reactions to Novacaine, Later, I learned it was actually the epinephrine in the Novacaine that set off the reaction. So now I had the luxury of doctors who wanted to figure out what was wrong with me but I was too scared to do any test or take any medicine. This started an internal battle that still wages in me today. I can't make myself take meds. When I do, I don't know if I'm having bad reactions or if it is anxiety causing symptoms.
Anxiety is debilitating. That's all I can say. It is not something you can just, "walk off" or "think away." It is truly debilitating and remains one of my worst Lyme symptoms today.
In Arizona we resumed our passion for camping. My best friend and cousin got married and moved out close to us. We had a great group of friends. Again, it was perfect, except for this illness. My friend would babysit for me while I went to "Panic Attack groups once a week." I felt like things were getting back under control a bit. I took Ativan for the panic attacks if they hit bad and that seemed to work for about a year.I just had to take extremely low doses so as not to have bad side effects that I didn't like from the meds.
Symptoms Crept Back In
The honeymoon didn't last, neither did the Ativan. I had been doing so well. Once when I was at home and all the kids were at school, I got a telemarketer phone call. They started going on and on about, "You should be a Medical Assistant." I was about to hang up and then something stopped me. Hey, would this be an answer for me? It would give me something to do. When I was younger I had started to go to school to be a nurse but getting pregnant again had changed my path. Maybe now that the kids were all in school, I could go back to school myself? I could figure out this illness for all of us!
I signed up. I qualified for financial aid. It was at night, four nights a week for four hours. I loved it! I was doing really good and it all came naturally to me. I would go study at a park with the kids for an hour after they got home from school, and then I'd drop them off with my husband and I'd go to school. But slowly symptoms started coming back. I started feeling weird one day in class. I started shaking uncontrollably. What was happening? I was so embarrased, I ran out into the hallway. My teacher called 911. Not this again, please not the hospitals and tests that never show anything.
At the hospital, all tests were normal. They just thought I had a panic attack. They gave me valium on top of the Ativan and sent me home. This would start a whole other round of hospital trips. I just never felt right again. The poisoned feeling was in full swing again and I started to not want to ever leave my house again. We had a beautiful house, out in Desert Hills, before anything else was built there. Our neighbors bred Ostriches and Emus and trained animals for rodeos, (sad but that's another story.) That was really the only neighbors we had. I was not used to desert/country life. I got a goat, and I remember sitting out in my backyard with the goat, as big steer, or I'm not sure really what they were would walk over and try to get to me through the big barred fence my neighbors had up. They were so cute and seemed so docile. They'd just poke their head through and stare at me. It was amazing.
I graduated from Medical Assistant School and did my internship with a DO Dr in Scottsdale. It was one of the hardest things for me to get through in my life. I felt sicker then any of the patients that we saw there. I would have panic attacks in the middle of drawing blood or doing procedures with the doctor. I was NOT scared of blood or anything like that, they would just come out of the blue, for no reason.
I made it through, barely. One day I was at garage sale by my house. It was unusual to see any activity by where I lived out in the middle of the desert but I saw a house with a garage sale so I stopped. (Which was out of charactor for me as I avoided people at all costs.) But I stopped for some reason and there was a little girl in a wheelchair. I tried talking to her and she tried talking back but she had cerebral palsy and it was hard to understand her. I leaned in to hear her better and stood there until I could interpret what she was saying.
Her mom walked over to me and said, "Why did you just try to talk to her?" I thought she was mad. I said I was just trying to be nice and saw her sitting alone so thought I'd say hi. She asked me on the spot if I wanted a job taking care of her at night. I took it. One of my best jobs I ever had in my life. And the family was so nice and made me feel comfortable. For a year I worked for this little girl taking care of her, helping cook her meals and doing homework and helping her write a book that she wanted to. It was awesome and she really touched my heart. I don't know if she knows that or not but she steered the direction my life would take. I would never work in a doctors office again. I always stayed in home health care and group homes because I liked the personal ongoing care and relationships that were formed that way.
I still did not feel good though. Everyday was a struggle. My kids were doing better. No more seizures since we lived in Arizona. They were doing good in school and making friends. My symptoms on the other hand kept growing. Now I was getting a rash of hives on my thighs everyday. They itched so badly and looked like big red welts. Back to the ER several times and no doctors could figure it out and no allergy meds they gave me would help. Just made me feel worse as usual.
In fact once when I took an allergy med, Clariton, my hands got all tingly and started turning a purplish color. I didn't know what to do anymore. I started becoming agoroaphobic again, I started hating intimacy because it hurt, my skin hurt, my internal organs hurts, I was only leaving my home if it was time to go to work. I started doing weird things, like I went and bought a car on a whim. My poor husband came home to a new car sitting in the drive way. I started resenting him. I couldn't explain why. He had never done anything wong to me and was a great dad. I just didnt' feel good. I felt pressure. He had a new job and wanted me to meet his new friends at the new office. I didn't want to. He wanted to go camping with my friends who had moved out to Arizona. I couldn't make myself go. I would agree to go, then pick fights over the stupidest stuff just so I could get out of it. I felt horribly guilty inside. I knew I was going crazy. I knew I wasn't normal anymore. I was sure it was some kind of poisoning. I didn't know what but I knew the anxiety, heart burn, shakiness, weakness and all the new symptoms, like major back pain were all somehow connected. Even if noone believed me.
Getting a Divorce
I told my husband on Easter that I wanted a divorce. Instead of feeling bad about it, I felt relieved. Why?? I couldn't understand myself. How could I be relieved? My kids will be sad, our families will be sad, I'm breaking his heart, we just bought a house out in Arizona where my friend and cousin moved to be by us! I would lose my job that I loved so much. I am throwing it all away and WHY? I couldn't even answer my own question. Looking back I think it was because I just coulnd't handle all the responsibility while being so sick. I was so sick and couldn't really tell anyone the truth, it was easier to push them away.
We got divorced and I moved in with my sister and her ex sister in law. I would babysit all the kids while they went out. I had never really been a drinker. Soon they started teasing me trying to get me to go out with them. I was more then happy to just go to the library to sign out a bunch of books and go home and babysit. But soon I felt lonely and throught I better at least try to meet someone.
I had gotten a job at a group home taking care of mentally and physically handicapped men. I loved it. I felt no judgement there for my own flaws and loved these guys with all my heart. It was a perfect fit. A couple of them had autism. I remember thinking, wow they are kind of like me. They can't handle noise or sound or a lot of activity. We could survive in peace together! I worked there three years and loved it.
Alcohol Brought my Lyme to a Whole New Level
Eventually I moved on and got a job bartending. I think this was my down fall. Even though I had a lot of great times, I also started drinking heavily. It wasn't the "weekend" gig it used to be. Alcohol was my addiction. It got rid of my panic attacks, it made me social. In fact it was the ONLY way I could relate to other people. It was the only way I could have fun.I believe it was also what caused the Lyme to surface on a whole other level.
My symptoms up to this point had been somewhat managable. There were times in my life I was definitly debilitated. I mean the anxiety kept me from leaving my house for months on end, more then a couple times throughout my life. But this, this was a whole new level.
I started having black outs. Like I would not know what happened the whole night before. These nights haunt me. Especially because they were not typical, I drank too much and blacked out, kind of nights. They were when I was with my boyfriend who I liked a lot. He was in the Reserves and we could only go have one or two then head home for an early night. On two occasions, I don't remember anything other then waking up alone with throw up everywhere.
Apparently I had attacked him out of the blue, not phsycially but yelling, saying, "I hate you, you are the worst thing that ever happened to me." The thing was, he was a total sweetheart. We never fought, I had no resentment for anything. The relationship was new and fun. What had happened? I asked my kids if they remembered the night before, us coming home because I couldnt remember anything and my boyfriend wouldn't answer his phone. His sister had called me and told me that he said I told him I hated him and was yelling at him. My kids told me all the remembered was Jerry coming through the door carrying me saying he didn't know what was wrong. He must of just layed me down on the bed, coat and all and I layed there throwing up on myself all night until I woke up the next day. This happened two weekends in a row. I was scared.
I got to the point where if I ever tried to drink I'd get really sick. I'd get a red rash across my face and chest. I would start to feel all weird, like I was drunk off one sip. And believe me, I gave it the old college try, I tried to drink with my friends. But I would wake up so sick I thought I was going to die. I would get this feeling like I was going into a tunnel and was passing out. My heart would start pumping super hard and I couldn't move. It was like some sort of seizure or near fainting spell and it would happen evertytime the day after I drank. This was in my late twenties and early thirties.
Her mom walked over to me and said, "Why did you just try to talk to her?" I thought she was mad. I said I was just trying to be nice and saw her sitting alone so thought I'd say hi. She asked me on the spot if I wanted a job taking care of her at night. I took it. One of my best jobs I ever had in my life. And the family was so nice and made me feel comfortable. For a year I worked for this little girl taking care of her, helping cook her meals and doing homework and helping her write a book that she wanted to. It was awesome and she really touched my heart. I don't know if she knows that or not but she steered the direction my life would take. I would never work in a doctors office again. I always stayed in home health care and group homes because I liked the personal ongoing care and relationships that were formed that way.
I still did not feel good though. Everyday was a struggle. My kids were doing better. No more seizures since we lived in Arizona. They were doing good in school and making friends. My symptoms on the other hand kept growing. Now I was getting a rash of hives on my thighs everyday. They itched so badly and looked like big red welts. Back to the ER several times and no doctors could figure it out and no allergy meds they gave me would help. Just made me feel worse as usual.
In fact once when I took an allergy med, Clariton, my hands got all tingly and started turning a purplish color. I didn't know what to do anymore. I started becoming agoroaphobic again, I started hating intimacy because it hurt, my skin hurt, my internal organs hurts, I was only leaving my home if it was time to go to work. I started doing weird things, like I went and bought a car on a whim. My poor husband came home to a new car sitting in the drive way. I started resenting him. I couldn't explain why. He had never done anything wong to me and was a great dad. I just didnt' feel good. I felt pressure. He had a new job and wanted me to meet his new friends at the new office. I didn't want to. He wanted to go camping with my friends who had moved out to Arizona. I couldn't make myself go. I would agree to go, then pick fights over the stupidest stuff just so I could get out of it. I felt horribly guilty inside. I knew I was going crazy. I knew I wasn't normal anymore. I was sure it was some kind of poisoning. I didn't know what but I knew the anxiety, heart burn, shakiness, weakness and all the new symptoms, like major back pain were all somehow connected. Even if noone believed me.
Getting a Divorce
I told my husband on Easter that I wanted a divorce. Instead of feeling bad about it, I felt relieved. Why?? I couldn't understand myself. How could I be relieved? My kids will be sad, our families will be sad, I'm breaking his heart, we just bought a house out in Arizona where my friend and cousin moved to be by us! I would lose my job that I loved so much. I am throwing it all away and WHY? I couldn't even answer my own question. Looking back I think it was because I just coulnd't handle all the responsibility while being so sick. I was so sick and couldn't really tell anyone the truth, it was easier to push them away.
We got divorced and I moved in with my sister and her ex sister in law. I would babysit all the kids while they went out. I had never really been a drinker. Soon they started teasing me trying to get me to go out with them. I was more then happy to just go to the library to sign out a bunch of books and go home and babysit. But soon I felt lonely and throught I better at least try to meet someone.
I had gotten a job at a group home taking care of mentally and physically handicapped men. I loved it. I felt no judgement there for my own flaws and loved these guys with all my heart. It was a perfect fit. A couple of them had autism. I remember thinking, wow they are kind of like me. They can't handle noise or sound or a lot of activity. We could survive in peace together! I worked there three years and loved it.
Alcohol Brought my Lyme to a Whole New Level
Eventually I moved on and got a job bartending. I think this was my down fall. Even though I had a lot of great times, I also started drinking heavily. It wasn't the "weekend" gig it used to be. Alcohol was my addiction. It got rid of my panic attacks, it made me social. In fact it was the ONLY way I could relate to other people. It was the only way I could have fun.I believe it was also what caused the Lyme to surface on a whole other level.
My symptoms up to this point had been somewhat managable. There were times in my life I was definitly debilitated. I mean the anxiety kept me from leaving my house for months on end, more then a couple times throughout my life. But this, this was a whole new level.
I started having black outs. Like I would not know what happened the whole night before. These nights haunt me. Especially because they were not typical, I drank too much and blacked out, kind of nights. They were when I was with my boyfriend who I liked a lot. He was in the Reserves and we could only go have one or two then head home for an early night. On two occasions, I don't remember anything other then waking up alone with throw up everywhere.
Apparently I had attacked him out of the blue, not phsycially but yelling, saying, "I hate you, you are the worst thing that ever happened to me." The thing was, he was a total sweetheart. We never fought, I had no resentment for anything. The relationship was new and fun. What had happened? I asked my kids if they remembered the night before, us coming home because I couldnt remember anything and my boyfriend wouldn't answer his phone. His sister had called me and told me that he said I told him I hated him and was yelling at him. My kids told me all the remembered was Jerry coming through the door carrying me saying he didn't know what was wrong. He must of just layed me down on the bed, coat and all and I layed there throwing up on myself all night until I woke up the next day. This happened two weekends in a row. I was scared.
I got to the point where if I ever tried to drink I'd get really sick. I'd get a red rash across my face and chest. I would start to feel all weird, like I was drunk off one sip. And believe me, I gave it the old college try, I tried to drink with my friends. But I would wake up so sick I thought I was going to die. I would get this feeling like I was going into a tunnel and was passing out. My heart would start pumping super hard and I couldn't move. It was like some sort of seizure or near fainting spell and it would happen evertytime the day after I drank. This was in my late twenties and early thirties.
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