"So silly, but the closer it gets to Friday the more worried I get. Made a list of symptoms big and small with my mom. Two full pages. How sad is that?!? I don't even know what this dr is going to do for sure, but the appointment is at the minimum of 2 hours. I'm so nervous..." {Facebook status July 21, 2010}
"Heading out to the dr's soon. Had nightmares about it all night. Probably won't be anything like my dreams. Starting off the day really tired. Praying for answers or at least the start of answers." {Facebook status July 23, 2010}
"Quick update: Specialist DID diagnose me. I am starting a treatment plan with meds and a spinal tap scheduled for August 5th. More will be done after that. I AM NOT CRAZY!! I'll talk about it more later...gonna go rest up for now. PS...still pretty serious stuff, please continue to pray for me :0)" {Facebook status July 23, 2010}
Here is what I wrote about my appointment that night:
I went to see a specialist this morning, Friday July 23. She is a Neuro Opthomologist. She did a thorough exam taking almost ½ hour to do a medical history. After it was all done, she gave me her findings. There are two things medically wrong with me.
The first, and most pressing, is called a Psuedotumor Cerebri (PTC). In plain English, my body is producing way too much spinal fluid and it is not draining or absorbing the fluid as it normally should. Because of this, it is causing the nerves in my eyes to swell. It has greatly affected the right eye and she said that it was extremely swollen. She seemed, in mom’s and mine opinion, to be a little upset that the neurosurgeon didn’t get me in to see her sooner. She said that the fluid could have been really concentrated in the first MRI causing the ‘mass’. When I did the second MRI, it was more high powered and was able to see ‘through’ the fluid. I might have a small tumor, in her opinion, but we wouldn’t be able to really see it until after the fluid is at a more normal level.
The second issue is just the migraines in and of themselves. They are affected by the fluid, but just because I have the fluid doesn’t necessarily mean that I should be having the migraines. Once we start getting the first problem more under control, I will start seeing a Neurologist to start treating my migraines.
As of today, the specialist gave me a really strong diaretic to start taking twice daily to help relieve the pressure. On August 5th, I will be having a spinal tap for problem #1. The spinal tap will tell us how much pressure, if there are any abnormal cells and if there is an infection. With that knowledge, we will be able to really fine-tune the treatment for the PTC. The doctor told me today that the treatment for the PTC will unfortunately make my migraines worse and that I would get worse before I get better. However, I’m so happy to know that I WILL GET BETTER!!
Another unfortunate side effect is that I cannot get a job or even try to work while going through treatment because the medications will be harsh and we won’t know how I’ll take to them. She said that doing my best to take care of my family was work enough. From God’s mouth through hers. Therefore, I will not be taking classes in the fall either. My focus will totally into getting better!!
Another thing that made me feel better already was that the doctor told me that the pain would be enough to cause the change in my personality and the depression. It is a emotional reaction to the physical pain and not because I’m crazy or just ‘making up’ symptoms. The dizziness, nausea, extreme fatigue and pain is all part of the physical problems.
Please continue praying for me and the family. Feel free to pass this on and share it. I am posting this both on Facebook and sending it through email to some that are not on FB. Please pray that I take to the medications with minimal side effects, that I am able to get through the worse parts and that I’m able to take care of my family.Please pray for Eric and the kids as this will be a hard, emotional time for them as well. God is good. He is faithful. Prayer is powerful. Thank you!!
"Was feeling sorry for myself last night and questioned "Why Me?" "Why now?" I, of course, got the answer back "Why NOT you? and Why NOT now?" Then a huge peace came over me as I knew huge rewards would be waiting for me at the end of my struggles. In Jesus name, I press on...."{ Facebook Status on July 26, 2010}
That summer in my Sunday School class for adults, we started studying Revelations. Really studying it with an in depth look into the wonderful book based on John's visions of future events. I have read Revelations several times and this was my second time with a study on the book. There are many theories as to whether Born Again Believers will be raptured before or after the 7 years of tribulation but our group was in the belief that we will be (myself included)raptured before the tribulation. One lady of the group lamented about when she was looking down that she will be sad to see her family and friends going through the 7 years of tribulation, so sad that she probably would even cry. I was so dumbfounded. I am also a little outspoken at times. I said "Not me. I am not even going to watch if I can help it. There are no tears in heaven. I will be enjoying my new body so much that I will be in heaven while in heaven."
There is a danger when you start living in chronic pain. Other people's pain doesn't phase you much. In fact, sometimes you're apathetic towards it and lose all sympathy to others who also live in pain. You especially start losing sympathy towards others who do not live in chronic pain. Your "Pain-o-meter" shifts. You no longer feel pain the same as you did before. You no longer feel sorry for others in pain. Yet, at the same time you start to relate really well to others in pain. You start to relate so well in fact, that it almost becomes a contest to see who hurts the most at times. You start comparing your pain like it was a beauty pageant category. We always rate our pain on a scale of 0-10 and sometimes even go over 10 because pain hurts so bad. Why do we do this because the medical professionals have to do this to us so that they can get a 'clearer' picture of our pain. Every time I walk in, they ask "On a scale of 0-10, with 0 being no pain and 10 being the worst you've every felt, how would you rate your pain?" I've gotten really coy about this question. I have started asking, "Do you want me to rate it on a 'normal' person's scale or do you want me to rate it on my scale?" To say that some of my pain would send a 'normal' person to the ER with a number of 9 where I would rate it at a 6 would not be out of the "norm" for me. So to say I had very little sympathy for people in pain whether at that moment in time or in the future during the Tribulation was the truth.
I think this feeling is true with the medical professionals that I run into as well. They have developed an apathy towards pain and people's perception of pain as well. It's not that the don't care, but that they have heard it all and seen it all. The specialist that I see is a nice woman and I will refer to her throughout the rest of this story as Dr. McN. Yet, she gives me "toughness" when I want someone to baby me. That first visit, I was intimidated. She has 4 degrees on her wall. She has her MD degree. She has an Optometry degree. She has her Neurology degree. And last, but not least, she has her Neuro-Optometry degree. Didn't matter. She was down to earth and we hit it off rather well. I do know some people who feel like she doesn't know a lot about this rare disease but over time there isn't a lot out there about it and I do feel like she does keep up about as best she can. Plus, I do refuse a few procedures and we will talk about that in the future. She was the first person who was a professional that made me feel hope. She was the first one to not make me feel like it was all a psychological/mental problem. I remember telling her that if it was, to just admit me to the psych ward because I was ready for it all to be over and I couldn't figure out how to "think" it away. She laughed and said that I would never be able to "think" it away. She was the first one to give me a plan.
However, there were a few things that happened that were, looking back, I wish I "knew then what I knew now." I left there thinking that a spinal tap and the meds would help me get better lickety split. For some people, they do, but for most, they don't. IH is a life long disease. Once you are diagnosed with it. You have it for life. Even if all my symptoms go away. I will just "go into remission." She didn't tell me that. I thought I would be cured. Another one was how bad the medicine's side effects made me feel. They helped with the pressure in my head, but the side effects were sometimes worse than that pressure and the headaches. The only reason I would have chosen the side effects over the headaches is because the "evil" meds (as I dubbed them) would not tear my stomach up like the medicines I was taking to help get rid of my headaches. Some of the side effects included severe tingling of the hands, feet and face. I also felt faint the first few weeks. Every time they would up my meds, I would call it the "flu" because that is exactly how it felt the first couple of days after upping my meds. I would be achy, nauseated and tired. Third, I still had the headaches. They didn't go away. They were not as bad but I still had them. It was frustrating but it was the truth.
The other thing I got was the "magically delicious" discussion about losing weight. It became my favorite part of every visit with her. I wanted her to show me the medical book where all these doctors memorized the line because it sounded almost to the wording of what the other eye doctor said. "If you lose the weight, all your medical problems might be solved." When in doubt, tell your patient to lose the weight. It might help whatever ails them.
I'd like to say that I saw dawn for the first time leaving her office but it was a 'false' start. However, it was the most hope and the most answers I had had in this whole entire process. I didn't leave crying for the first time. I do have to say that dilated eyes will make you feel weird for 5-6 hours and alway have a designated driver, but it didn't make me cry. We actually went out for Chinese food that night. Who celebrates getting a life-long diagnoses of a rare disorder? I guess our family does.
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