Well, that was unexpected.

Years ago, I was diagnosed with ADHD. I've known I've had it my entire life. It was incredibly hard to sit still in class when I was little, and my mind constantly wandered. I would often be out on the prairie with Laura, Mary, and Carrie in my mind. We weren't just picking wildflowers. We were building treehouses, fighting with riding horses, or surviving being stalked by a bear or mountain lion during math class. It hasn't let up. I still struggle with keeping my mind in one lane. The Fibro has made it worse. There are days the fog is so thick that I struggle to remember my own name. Okay. Maybe not my name, but definitely my birth year.

I had tried one of the name brands of ADHD medicines years ago, and I was amazed at how well I could put not only 2 thoughts, but 3, 4, or 5 thoughts, together at one time! Alsas, I was allergic to it. It raised my blood pressure and gave me horrible headaches, so I only took it for about a week. It was such a disappointment that I couldn't take it anymore. I was able to function efficiently for the first time in my life! However, being concerned about similar reactions to other medications, I didn't try anything else for my ADHD for another 15 years. Until recently.

Lately, thoughts bounce in an out of my mind at incredible speed. I try to focus on one thing and another thought pops it right out of my mind. So I talked to my doctor about my ADHD, and they agreed that I could try something else. I did really well with it for the first 9 days or so. I was able to have coherent thoughts without having to repeat what I was saying multiple times. However, on the night of the 9th dose, I noticed my upper lip was tingling. It felt like it was waking up from a trip to the dentist. However, it was gone in the morning, so I didn't think much of it.

The next morning, I had no tingling, so I took the medication again. An hour or so after taking the med, my lip started tingling. Then my left eyebrow. Then my chin was numb. Then my right eyelid, followed by my left cheek. An hour later, I was not only still struggling with odd facial tingling and numbness, but my scalp started playing Simon on me. Remember the light up game with the colors that would light up, and you'd have to remember their sequence? It was just a random pattern that pulsed, never made any sense, and could be dizzying to watch. Well, that's what my scalp started doing. It would jump from one patch to being numb, to another patch tingling, to yet another tightening.

It lasted for 7 hours.

Needless to say, I didn't take any more of the medication. And when I was still struggling with facial numbness and tingling a week later, I made an appointment with a neurologist. He talked about how migraines and a pinched nerve could account for the numbness and tingling, and we talked about an MRI I'd had done 11 years ago. (The neurologist at the time said that I had a couple of spots on my brain, but he also specifically said I did not have MS. However, he also signed me up with the MS Society to receive all the info on MS. It concerned me that he would do it, so I called and asked his office, if it said in my records that I had MS. It did not, so I asked them to remove my name from their mailing list. It was disconcerting to get requests to join clinical trials for something I didn't have!)

I had the MRI on the 30th and went in last week to find out the results. I had the CD in my hand, and the doctor asked me, if I'd looked at it yet. I hadn't. How unlike me is it that I wouldn't even look at it? Obviously, if I had been thinking clearly, the first thing I'd have done was pop it into the computer and looked at it. I certainly wouldn't have been thinking migraines and a pinched nerve had I seen it. The MRI looked like someone had spilled popcorn all over the film. My brain is full of lesions.

I have MS.

How sad.

While going through paperwork yesterday, I found the business card of the geneticist who was so rude to us after the amniocentesis that confirmed Scooter would have the genetic anomaly her sister had. She was highly offended and accused us of wasting the government's money, because we hadn't considered abortion an option, if we found out Scooter was going to have the same chromosome rearrangement her sister had.


I was curious as to whether there were complaints lodged against this doctor by patients, so I googled her name. I found out she died in 2005 of a brain tumor that was cancerous.  

I just feel sorry for her family. How torturous for her 3 sons and her husband to watch her succumb to something so heinous. And for her parents to lose their daughter. 


I found that her father died just 3 years after she did. He was 77. She was listed in the obituary, along with 2 brothers, as having preceded him in death. It made me wonder, if maybe the brothers were why she went into genetics in the first place. Perhaps they had some sort of genetic disorder that resulted in their death, and she went into the medical field to try and find an answer to keep it from happening again. The information I read concerning the brain cancer was that it occurred more readily alongside certain genetic conditions. 


Maybe this was all on her mind that day in 1993 when we saw her after the amniocentesis. Maybe she felt an urgency to find answers to try and stop whatever it was that killed her brothers. Maybe she was trying to find a cure, so she could save her own sons from this terrible thing.


I'm not sure what happened. 

I just know my heart breaks for her family.

That which changed our Life Before. Part 4

At some point during the drama with Hopper's heart, vocal cords, ears and tongue, I went in for an amniocentesis to see, if Scooter was going to have the same chromosomal abnormality that her older sister had.

The amnio itself was uneventful. We made a day of it, because we had to travel 50 miles from home to get it. We tried to make it a fun, happy, light occasion, even though we knew what the potential issues were that may face us. A few weeks later the results came in, so Hubster took the day off from work once again, we loaded up the kids, and headed back down to Wilmington for the results.


The doctor didn't want to give us the results outright. He wanted to prepare us for what lie ahead, so he started out with generalized small talk, so it was obvious to both The Hubster and myself that our baby was indeed going to have the same genetic condition that Hopper had. So I did what I could to hang on and not give into the panic I felt rising in my gut.

I glanced over at the genetic report that was lying on the doctor's desk and without moving it saw what the sex of our baby was. We had waited to find out. We wanted to be surprised. But now I needed to know. I needed to have something to hang onto at this really scary moment. I needed to start making plans to keep my mind off the scary unknown that loomed in front of us. I needed to know who I was falling in love with, so there was absolutely no chance of that love being diluted by the information we'd just been given.


"We're having another girl!" I choked back tears and tried to keep my voice uplifting and light. I didn't want the girls to see I was upset. I could not give into what I was feeling at the moment. Oddly, the thought that I couldn't get out of my head, like a bad song that just won't go away, had nothing to do with the chromosomal issues and the problems that may arise. Nope. I couldn't stop thinking that I was failing somehow by not giving my husband a baby boy. Today, it seems like such an odd reaction, but it's what passed through my mind at the moment, however fleeting the thought was. 

I also remember feeling somewhat smug that I could read the genetic report, even though the doctor was irritated with me for having blurted out that we were going to have a baby girl. I could tell he didn't think I was taking the situation seriously, when in fact I was taking it all too seriously. I had experience with this genetic condition, and he had none. I knew our family would face many challenges with Scooter, but I needed a win. 

Any win.



And then I was snapped back to reality.


For nobody told Bugster not to give in to what she was feeling. 

Sobbing, she yelled, "But I wanted a baby brother!" 


I have thought many times of how grateful I was for her little breakdown. I had no doubt she would love her little sister. She'd get over the fact she felt cheated at that moment in her little life. It would become a distant memory. However, it gave me something to focus on other than the immense grief I was feeling. I knew I would love my baby no matter the circumstance. But I also knew life would not be easy for her. And I grieved for what she faced. I grieved for the loss I felt myself, as I tried to stay composed.


We got the name of a geneticist to talk to about Scooter's diagnosis before we left, and we took the girls out to eat before heading back home. I don't remember the name of the restaurant, what we ate, or what anyone one was wearing. I just remember feeling like I was in a fog for the rest of the day.


When we got home, I made the appointment with the geneticist. Even though we knew that Hopper was the only one in the world at that point with the particular chromosomal abnormality that affects our children, we were hoping to get some new information about what it meant. 

Instead, we met the geneticist from hell.


She was a tall, slender woman with dark hair, but I don't recall her name. I just remember how cold and cruel she was. 


We began by asking her, if there was anything new about the genetic condition Hopper had and Scooter would be affected by. She had no news for us at all. Not surprisingly, we knew more about it than she did. But what happened next blew our minds.


She asked us when we would be having the abortion. 


We sat there dumbfounded with our mouths hanging open that she felt she had the right to assume we would end the life of our little one. 


Uncomfortably, we stammered that we weren't intending to end the pregnancy. 


So she began to brow beat us and extol the virtues she saw of us having an abortion. She told us how our baby wouldn't have a life worth living. That she'd amount to nothing. She'd likely never be able to walk or talk. That she'd probably be a vegetable. That we didn't have a right to put her through that or put that burden on society.



We were speechless. We were in absolute shock that she was trying to strong arm us into having an abortion like a pushy used car salesman trying to push a piece of junk car on an unsuspecting kid.


I don't know which of us spoke first, but we assured her that abortion was not an option for us.


She glared at us and yelled, "If abortion wasn't an option, why did you waste the government's money to have an amniocentesis?!"


I yelled right back at her, "So we can have access to the right doctors when she's born, if she has a problem!"


Dazed, but united, we stood up and left. 


In an odd way, I'm thankful for the run-in we had with the geneticist that day. It brought us closer together as a family, as a husband and wife, and it solidified our determination to do everything we could to protect and nurture our babies. 


We didn't know it then, but we would need that reliance on one another many times in our lives together.

Yeah. That's the ticket.

When I woke up this morning, I called my doctor's office to see, if they knew of a different surgeon for me to see, or if there was any way she could do the appendectomy. I got a call back from my doctor's nurse. She said my doctor wouldn't be back in until Monday, and she wasn't sure what other surgeon to refer me to, so I just told her what happened and that I wouldn't be having the appendectomy. She asked, if I had talked to the surgeon's office yet, and I told her that I was planning on calling them as soon as I hung up and thanked her for her help and got off the phone.

When I called the surgeon's office, I told the woman who answered the phone that I needed to cancel the appendectomy. She asked me why, so I told her what the doctor did, and that I wasn't
comfortable having him do the surgery, where he filled the consent form out for me and didn't give me the choice about having the student in the room. Then, I asked her to please cancel the post-op appointment for me, since I'm obviously not going to be coming in for it, since I'm not having the appendectomy.

What she did next blew me away. I almost laughed, because she sounded so haughty, but I just shook my head. In a very irritated and gruff voice, she said, "Well. I'm going to have to tell Dr. Soandso about this!" It was like she was tattling to the principal or something. Like she wanted to get me in trouble. I told her not to worry about it. That I'd already called my doctor's office and told them. She didn't have much to say after that. I think I deflated her balloon of indignation.

But the thing that blows me away is this: If I felt the surgeon was being too pushy and trying to be intimidating, did she really think that talking to me like that was going to make me change my mind and say, "Oh! You know, I made a mistake! I really do want the jerk to do my surgery after all!"

Yeah. That's the ticket.

What would you do?

I need to write this before the pain meds kick in, and I'm in LaLa Land.

Had the pre-surgical appointment at the hospital today. Everything went fine, but I almost didn't make it to the appointment. I use the alarms on my cell phone every day. Several alarms every day, even. But something happened to my phone last night, and the battery didn't charge. And the battery had died. Thankfully, I happened to wake up 15 minutes before I had to leave the house, and I was able to make it across town and get to my appointment with 2 minutes to spare.

My second appointment happened a few hours later at the general surgeon's office. I was hoping to get a scar fixed on my arm while I'm already in surgery, but he said he didn't feel the surgery would do anything to help with the pain I have in it, and that he felt it bordered on 'unnecessary surgery'. He made me feel like he thought I was trying to scam the insurance company.

Then, we talked about the appendectomy I had asked about. I figured that since I'm already going to be out for surgery the way it was, that maybe it would be a good time to get my appendix out. It makes a lot of sense as far as being cost effective. It would be cheaper for the insurance company and cheaper for us, if I had it done at the same time. And while he said he would do it, he also wrote down on the consent form that the reason for the appendectomy was that the 'patient requested it'.

He didn't say that the patient requested it, because she's having other surgery that day. Just that the patient requested it. I don't know, if I was just oversensitive or what, but it came across to me like he thought I was just asking for the sake of wasting money, and it made me uneasy.

Then, he gave me the consent form to sign. At the bottom of the consent form there are 4 things you have to give or deny consent for or mark as not applicable...1) Do you consent to a student being present and helping perform the surgery? 2) Do you consent to a graft, if a graft is needed. 3) Do you agree to have a blood transfusion, if necessary? and 4) Do you consent to have anesthesia in spite of the risks.

I filled out the same consent form at my gynecologist's office yesterday. When it came time to answer the 4 questions, she checked off that the graft was not applicable and told me she'd give me a minute to read through things and check the boxes I felt comfortable with. But she gave me the choice. And the only one I even had to think twice about was having a student present during surgery.

However, the surgeon today had checked the boxes that he wanted checked. Not the ones wanted. Granted, 2 of the 3 questions were answered the way I would have answered them, but he just assumed I was okay with having a student in the OR. I wasn't. And I explained that I wasn't okay with it, and that I had specifically checked the box that said I did not want to have a student in the room while I had surgery at the other doctor's office.

He got a little irritated with me. He proceeded to try to guilt me into accepting a student in the room. He said, "You mean you don't even want Jamie, the girl that was just in here helping you and taking your history in there with me? She'd be observing me." But the thing is, if I agreed to have her in the room, that I was agreeing to her helping with the surgery itself. I again said that I wasn't comfortable with it. So he scribbled out the check mark on the 'agree' line and checked the 'do not agree' line.

I felt very uncomfortable with it all. I felt like he was trying to pressure me, to guilt me, into doing what HE wanted. Not what I wanted or was comfortable with. And the only time he asked me about it was after I said I wasn't comfortable with it, and then I felt pressured to go along with what he wanted.

Tonight when I sat down to the computer, I looked him up online. He only has a rating of 1.5 out of 5 stars for satisfaction with patients. Granted, there were only 5 ratings, but that also means that not even one person gave him a 5 overall. I mean, those are some really low ratings. If not even 1 out of 5 patients can give you a 5, you're not the surgeon for me.

I'll be calling my gynecologist (whose rating is 4.5 out of 5 based on 4 reviews, and whose ratings I totally agree with) to let her know that I will not be going with him as a surgeon. I will skip having an appendectomy rather than put my life in his hands.

I doubt I'll have time to get into another surgeon between now and next Wednesday, so I will probably only have one surgery and one surgeon in the room. I'm much more comfortable with that than having him touch me.

I will definitely let someone in his office know why I've chosen not to utilize his services. I think I'm also going to let someone at the hospital know that I felt he was trying to coerce me into having the student in the operating room.

I'm not sure who I need to tell, but I'm know I need to tell somebody.