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How Do We Get Off This Ride?

For the last two years, almost to the day, my, now twenty-year-old daughter and I have been trying to play catch up with this mysterious disease of unknown origin, that has invaded her body faster than we can keep up with. It seems ever since June 2008 our lives have been turned upside down, over and over again. I recognize the philosophy and logic behind the saying “that what doesn’t kill you makes you stronger.” However, right now, neither one of us is feeling all that strong.

It all started innocently enough—not really. It came on fast and furious. I believe the exact date was June 18th, 2008. I was sleeping soundly in my bed when I was awoken by my then, just graduated from high school, and just turned eighteen-year-old daughter who was complaining of a severe headache. I will say that, looking back on the days preceding this evening, I had taken notice of her eyes being very bloodshot. We attributed the blood shot eyes to not getting enough sleep and the possibility of her contacts bothering her eyes, both of which were completely wrong. So, she wakes in the middle of the night crying about having a severe headache. I give her a pain pill that I had left over from my most recent gallbladder surgery, in hopes that that will give her some relief, at least until morning.

She was able to sleep after taking that mild pain reliever, but once that pill wore off, the headache was back fast and furious, and with the headache came complaints of vision problems. At first we kind of, once again, attributed them to the severity of the headache—possible migraine? No. I remember us driving to pick up my jeep from the dealership that Wednesday morning, and she was driving that morning, and much to my surprise she pulled of the interstate and told me that she couldn’t see well enough to drive and she was scared about that. I am not sure scared is really the right word to describe how she was really feeling or how I was feeling that day either. I had a more of a sinking stomach feeling that something was terribly wrong. Call it a sixth sense, women’s intuition, call it whatever you want, but anyway you spin it, I don’t have the perfect adjective for how I was feeling. Maybe impending doom would be a good descriptor.

Surprisingly, I was able to convince her to let me take her to the ER. Since she was still eighteen, I still had some say in her medical care. She agreed to going to the ER. We walked in and registered, and I explained her symptoms to the registration woman, who then immediately got a nurse, who then immediately took us back to an exam room. The rest of that day is somewhat fuzzy as things happened real fast and then at other times it felt like an eternity. The ER resident came in, I can still picture him to this day, young, good looking, but most of all he had that “concerned” look on his face that they desperately try not to show the patient’s but some people aren’t always able to disguise the “bad news” look. Side note: I am actually tearing up while I am writing this as it was and is the worst two years of our lives so far. She jokes with me now that things can’t get much worse as she doesn’t have that many organs left that can cause her any problems—that is a sad statement, but unfortunately a very true statement.

So, the ER doctor does an exam, and asks a lot of questions. At one point my daughter turns to me with that look like “help me” and I knew to be the one to start answering the questions. My daughter was lying on the gurney withering in pain, with her eyes shut, and at one point with her hands over her ears—that is how bad her headache was. At first my daughter was adamant about not having any pain medication because she has never been fond of IV’s, but she relented when I asked the ER doctor, “can’t you give her something for the pain now?” I believe they gave her a shot of Toradol, and within a few minutes you could tell it was working. Unfortunately, it wore off rather quickly or her headache got worse, we aren’t sure which, but nonetheless it was time for Morphine. The morphine came in handy because she was told that she needed a Lumbar Puncture to check for meningitis. At that point she was like, “Whatever, just do it.”

 

So, she had a lumbar puncture which came back with some abnormal cells, but not enough to really raise any flags. They kind of suggested the abnormal cells were due to “contamination” during the procedure. We got a lot of test results that were “maybe - maybe nots” in the following two years. She was then seen by an opthalmologist, who at that time “couldn’t appreciate” any reason for her having any visual problems. The pretty much went for the simple diagnosis of a Migraine for this visit. They sent us home with oral pain medication and a pediatric appointment that next day. She had another rough night with the pain and visual problems, the oral pain medication was not even taking the edge off of the pain. I think the only reason she slept some that night was because she was so exhausted that sleep is all she could do—moving, talking, hearing, seeing were all too painful for her.

That next day at the pediatric appointment, we got right in a room, and the actual doctor (meaning no resident saw her first) came in and within minutes arranged for her to be admitted. Fortunately, she was still considered a pediatric patient at the age of eighteen, so they had a bed available for her. So, we got up to her room, and then she was bombarded with residents and medical students. But, fortunately they had already given her a few doses of Toradol, so while she was still in pain, she was able to focus enough to endure all the questions and the exams. The opthalmologist residents came by again to see if anything had changed from her last exam the day before, and of course to them nothing had changed on her eye exam. The best that the doctor’s could come up with is a diagnosis of a migraine. They immediately took her off her birth control pills, as they thought that was a contributor to the migraines. However, one medical student, and I am sure she was probably a first year student, at least I hope so, because if not she needed to take another course in bedside manner and effective listening skills. The reason I am saying that is because they decided if it was a migraine, they would give her the injectable of Imitrex, a well known drug used for Migraines. The thought process behind that was that the Imitrex would almost immediately relieve her migraine pain or at least make a serious dent in the pain. Unfortunately, just the opposite happened. The imitrex made her pain worse. This is where the first year medical student comes in. The medical student comes in and asks my daughter why the Imitrex didn’t help relieve the pain. I think my daughter and I looked at each other, like “is this a trick question”? Isn’t she the medical student? Why is she asking us a question she should know the answer to? Fortunately, the rest of the “team” came in and relieved us from this medical student. At one point that evening I remember my daughter being in better spirits, so much so that she wanted me to push her in a wheelchair to the gift shop to get some treats. We still talk about that night because the only wheelchair was for someone twice her size, and my driving capabilities of that chair were pretty poor. So, we spent that night in the hospital, and they, once again discharged us with oral pain relievers and instructions to come back if her conditions worsens. Let’s just say that we didn’t waste any time adhering to the “come back if her condition worsens”.

Yes, that is right, we were right back in the ER the very next day. So far nothing has helped her pain or visual problems, this is the inpatient stay that everyone remembers. So, we are at the ER, and she gets ushered back to a room, and on a positive note there was this nurse named Eric—gorgeous young guy, flirting with my daughter. Stephanie hadn’t really perfected her “flirting” skills as she was in a relationship at that time, and unfortunately she is still with the same dork (sorry just had to say it). Anyway, it was very funny each time that Eric came into the room, he was doing some serious flirting with her—serious flirting! Every time he would leave the room, we’d laugh and I would have to give her some instructions on “how to flirt”. Yes, he was, as we found out later about nine years older than her, but it didn’t matter at the time, he was a very welcome distraction, for both of us.

 

So, the attending physician, a woman this time, comes into our room. We don’t have to give much history as the same attending was on duty that day too ... Dr. Zeger. So, the Senior attending comes into the room and just kind of off-handedly says “you know that we are admitting you again right?” Of course, no, we didn’t know it, but I wasn’t surprised. Of course, Stephanie didn’t want to be admitted, but she didn’t have that much fight in her to even try and argue her way out of being admitted. All she wanted was pain relief and a diagnosis that we could live with, she got some pain relief but no diagnosis, and to this very day, she does not have a diagnosis—she is my Mystery Diagnosis girl!


The first night of this admittance was not a good one. She was in so much pain, and her vision was worsening. But what is really memorable about that first night was the visit from the Opthalmologist—one we hadn’t seen before. We had seen his resident but not the actual doctor. So, while the resident is examing Stephanie, I asked, like any other mother would ask “do we have any ideas of what is going on?”. Now what I am about to tell you is the absolute truth, he said and I quote “It is not like I am dealing with a 2x4 here”. Both mine and Stephanie’s jaws dropped to the floor in shock of such a comment. They finally finished their exam, and on this exam they found visual changes in her eyes, so they had something substantial to attribute her visual problems to. Problem was that since they hadn’t been able to rule out all types of infections they couldn’t do more than give her steroid eye drops until all the tests came back. The steroid drops really didn’t make a difference, at least not in the beginning. But the best part of this visit from the opthalmologist wasn’t that they finally found something wrong with her eyes, instead it was Stephanie’s comment she made loud and clear when the eye doctor’s left the room. I am sure that I don’t need to explain that hospital room doors do not shut on their own and even when someone is actually trying to close a hospital room door, it doesn’t go very fast. Well the as the eye doctor’s were leaving, Stephanie looked at me and said, and I quote “What a Dick!” Shortly after she said that, we heard them talking outside her hospital room door, and we just laughed. I can honestly say from that moment on that man has been the nicest, kindest, most helpful male doctor that we have yet to meet. I think by her saying that and saying it as loud as she did, he had to have heard her, there is just no way he couldn’t have. If he was truly arrogant, he could have made a comment to his resident that he was being the inconsiderate one, but the next day when the resident came back to see her again, he had this sheepish “way to go” look on his face. A look like “I’ve been thinking that same thing, but I am so glad you said it” look.

Well, he was the first doctor that we had to put into their place, but not the last. Remember that 1st year medical student? Well, the next day when they made their rounds, the medical student comes in and tries to get an updated history on her etc. We even let them go so far as to give her another Lumbar puncture, as they were trying to rule out Pseudo Tumor Cerebri, which is a condition of too much spinal fluid built up behind her eyes or around her brain. So, she had another puncture, this one showed her pressure to be elevated - just slightly, but they decided that was only because they didn’t have her positioned correctly on the gurney for an accurate measurement. Apparently she shouldn’t have been in the fetal position, instead she needed to be laying with her legs straight out, not bent. Like I said - a lot of “maybe - maybe nots”. So, at the end of this exam, and actually not until the next day when they did their rounds again, did I finally have to talk to the Senior resident about the medical student. So, they all come into the room, they give their best medical guess as to what is going on, granted they had more to go on now that the eye doctor’s had physical evidence of some disease process going on. So, when they were done with basically not telling us anything new, I asked who the Senior resident was because I wanted to talk to her alone, without the other residents and medical students. Basically, both Stephanie and I expressed our dislike for the medical student and we gave the resident examples of why we felt the way we did, and I asked to have her removed from Stephanie’s case - basically we didn’t want to see her again. The resident completely understood and said she would talk to her, and that we wouldn’t have to deal with her again. We expressed our reluctance about “kicking her off our case” but sometimes you have to do what you feel is best, and we both didn’t want her asking us medical questions and then questioning or interrogating us as to why some medicine did or didn’t work. Needless to say, we didn’t see that medical student again. But unfortunately, the remark Stephanie made to the eye doctor and us dismissing the medical student really was the highlight to our 5 day stay in that hospital.
 
I frequently refer to that hospital stay as my being in solitary confinement. I was not allowed to leave the room, for more than a few minutes to get ice or something to drink/eat. The room remained dark, no lights were ever turned on, nor was the TV. Stephanie spent a great deal of time sleeping as she finally agreed to an IV drip of morphine. However, she wasn’t eating either, so the morphine helped speed up some serious constipation for this poor girl. After many MRI’s and CT scans done during this 5 day stay, we were only slightly closer to a diagnosis. All we had was that she did have some eye condition going on, but like I said they couldn’t do anything about it, like give her oral steroids because they still didn’t have all the blood work back - and I am pretty sure they tested for practically everything they could think of, but none of them pointed them in any one direction, but they directed them into many uncertain and unconfirmed diseases.

We finally were released that Thursday, with an appointment to see the eye doctor at his clinic the next day. I remember going to the visit with her - as I did for all her visits from then on, but not just because I was her mother but also because she didn’t have the vision to be able to drive. It was a good 3-4 months of my driving her around because she couldn’t legally drive. Thinking back on it now, they could have diagnosed her with being legally blind, and then maybe she could have gotten state aid to help with the mounting medical costs.

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