Teachers have a saying that goes "Fail to plan. Plan to fail." I have lived by that motto ever since college. I am a big planner. I need a plan to feel secure and to know how to move forward. I do not like surprises and not knowing what the future has in store is scary for me. So, all this IH stuff, not having a job and generally, not knowing what the future would bring me was scary for me. For me, it made me feel like I was failing and it was hard for me to cope.
However, after coming back from Mississippi, I had a vision. I had something to hold on to even if it was murky. I had no idea how I was going to write a book but I at least had a vision of me writing one. I also had a story to explain how my illness (and any one's illness) could look so deceiving. How one could look "normal" on the outside but still be a little broken (or a lot broken) on the inside. It was coming together and I was feeling better about life.
I was still taking a really nasty drug called Diamox. It was fairly uncommon drug. My pharmacy is a small, hometown pharmacy only carried a small dosage of it and when I started taking more and more of the drug had to special order it just for me. I started calling it my "evil" drug. The side effects were brutal on my body. It was helping to relieve the fluid to the point that it wasn't causing it to rise any more on my brain and/or spine, but it wasn't helping it to go down or to help my optic nerve swelling to decrease a whole lot. Every time my doctor upped the meds, I would have what I called Diamox "flu" for a few days after. I would ache and be nauseous. I would sleep most of the next few days afterwards. By the end of November, I was taking upwards of 1750 mg of the medicine. I just didn't know how much more I could take. Every time I would leave my doctor's office I would wonder how much more she could up it without it making me even more ill from the side effects than it was actually helping. I would soon find out.
The Wednesday after Thanksgiving that year, I told my youngest as I was dropping her off for school "When you get home, I'll have a HUGE surprise waiting for you when you get there." My plan was to decorate the entire living room in lights for the upcoming Christmas season. We needed some cheer in the house and I knew having the lights to turn on and twinkle would be just the thing. I had been extremely tired but that was nothing new. If I did this project in the morning, I knew I could have it done and spend the rest of the day napping and doing nothing. I had been experience some mild cramping in my shoulders and back but attributed that to how I slept the night before. When I got home from taking the kids to school, I sat down to eat my breakfast. That is when the cramping in my legs started. I have never felt such horrible cramping before in my life!! It felt like as if all my muscles were involuntarily squeezing at once. It was mostly in my left leg but my right leg would follow. It was in my calves but the pain would travel up into my hip region. It hurt so bad that I could hardly walk and I started to cry. I really had no idea what I had done or what to do. So...I called my mom.
She took off work and we headed to the ER. This time, to the "big city" ER. I knew that with my rare diagnosis that my hometown hospital might just feel more comfortable, especially since I was just recently diagnosed, if I went to the hospital that my specialist was associated with. When I was pregnant, I had lots of problems with my sciatic nerve and knew the pain associated with that nerve. It was not that nerve.
I could barely walk by this time because the muscles were spasming and it hurt. At first, they put me in the Step-down Unit of the ER. They thought it was my sciatic nerve. I kept telling them about my diagnosis and that I KNEW what that nerve pain felt like and this WAS NOT it!! I was so incessant that they moved me and started running tests. Of course, every time I mentioned my diagnosis they looked at me like I had 3 heads. I kept saying "Call Dr. McN's office. They will explain it to you." (I learned later that they never called her office.) After all the tests were run, I found out two things: 1)My potassium level was 2.3 and 2)I had some degeneration were they had done the spinal tap. They tried to get me to drink some liquid potassium but I couldn't because of the taste. The ER sent me home with a prescription for a muscle relaxant.
I was pretty miffed. I knew something was not right and that I had a pretty high pain tolerance by this point. I called my specialist office myself. By the time I got through, I told them what had happened. The office, themselves, were a little upset that I had gone to "the big city" ER and that they were not informed. Next time, I was to not leave that ER until that office was informed. A "normal" person's potassium is suppose to be between 4.0-5.0. Mine was extremely low. I should have had what they called a Potassium Drip. My specialist would not have let me leave the hospital until that was done. However, since I had already left and I really didn't want to go back, she sent in a prescription for potassium supplements. The other part, I was NOT to fill the muscle relaxant script. If I had filled it and taken it, with the other medicines that I was on, it would have at the very least put me to sleep for days if not into a medically induced coma. The doctor's office was so relieved that I called them. I learned that day to always, ALWAYS question everything. Every prescription. Every test. Every thing that any medical personal wants you to do. I could have done serious damage had I filled that prescription. My hometown pharmacy MAY have caught that but the might not have. I could have filled the script somewhere else and I would have really been in trouble, medically speaking. That day scared me and scarred me in more ways than one.
Of course, I didn't get the lights up. My daughter came home and started bawling. "Was your 'surprise' going to the hospital?" I felt horrible after that! I promised her that it was NOT!! I told her that it was to put lights up and get ready for Christmas. I made her a vow that I would never, NEVER go to another hospital, doctor's appointment, test or anything without her knowing it. There would never be anything like that to "surprise" her again. She would always know if I was going to the hospital if I had to call the school and have them give her a note. To this day, I have kept that promise.
I have also become a mini-expert on potassium. To get potassium in a prescription form, you don't get it in milligrams. They come in MEQs or milli equivalents. Right now, I still take 80 MEQs a day. The recommended highest dosage of MEQs a day is 100. I haven't met too many people who take more than me in a prescription form.
Another one when I talk about my potassium issues is the first thing people say is, "Eat a banana." Oh how I wish it was as easy as that. Bananas are a good source of potassium, but in my research there are other foods that are actually higher in potassium than bananas. It is just bananas are the most easily accessible and convenient source. However, sweet potatoes and spinach have bananas beat in the amount of potassium in them. Also, if I need a quick source of potassium when I am sick, it is recommended that I drink the sports drinks. I really can't stand the sports drinks but they are quicker to absorb the needed electrolytes such as potassium.
Why is potassium important? I never knew until I was low on potassium. To be honest with you, I didn't really care. Now, I care a lot! You need potassium in your body to help carry the electrical impulses needed to "run" your muscles. When your muscles move they use a type of electricity to move either in a "open" or "closed" position. Potassium is used to help those electrical impulses "know" what to do and where to go when your brain/spinal cord send those electrical impulses to the muscles. So, when my leg muscles were cramping my potassium was too low and therefore, not sending the right "messages" to the muscles. This is all pretty basic but I hope you get the picture. The worst part about having too low of potassium is that your heart is a muscle. If your muscle cannot function correctly, then you have problems.
During the month of December, I would go in at least once a week, if not twice to have my blood taken to check my potassium levels. They would fluctuate some but mostly stayed within 2.8-3.4 level. I continued through January as well but once they were consistently over 3.0, I went every other week. Now I just have them checked periodically. Besides taking the supplements, two things helped with the potassium levels. The first was my specialist started weaning me off the Diamox. The second I will talk about in a later chapter.
The only problem with weaning me off the Diamox is that my specialist started me on another medication. It was a generic version of Topamax. I has heard a little about it in an on-line IH community but at that point, I was still following the plans set out for me by my specialist. I did not think anything about starting this new medication. I have to tell you that if I knew then what I know now, I would not have started taking it. The side effects are worse for me than what the Diamox side effects were. I wasn't sure at first what was happening because of the low potassium, the weaning off the Diamox and the starting of the Topamax. I do now.
Some people, myself include, nickname Topamax "dopamax". Topamax was first marketed to be a drug to help people with seizure and then it was found to help people control their migraines by helping prevent them. It might help prevent migraines for me but one of the things it did for me as a side effect was to slow my thinking down. I started forgetting things. My memory was shot. I really couldn't remember. I would forget words as I was speaking. I royal messed up our finances after starting to take the medicine. My spelling and grammar would be horrible. I would even forget how to spell my name at times. I would forget what people told me. I would be in the middle of a conversation, literally, hear the words someone said and have to have them repeat them to me because my brain did not comprehend what they had said. It sounded like a foreign language to me. If I didn't write things down right away, they would be lost to me. It was hard to cope during this time. I felt like an idiot had replaced me. It was worse than when I was first diagnosed. One day I showed up for counseling and cried the entire session. Sobbed and sobbed. Why? I had forgotten to wash the soap out of my hair during my shower. Who does something like that? I really felt that I had jumped onto the crazy train and even that had left me at the station of La-La Land. For what? To prevent migraines that I was still having? I couldn't hardly focus on a tv show during that time and to read a magazine left me wondering Who done it? I couldn't even play simple children's games without feeling frustrated and bored. And God wanted me to write a book about all of this...right...
That was a long winter between 2010 and 2011. I felt unfocused and drained. I was a human pin cushion. I used to be scared of needles but now I show them the spot that is the best place to draw blood. I could see the peak of dawn but it was going in slow motion. The other thing Topamax did for a while was cause hallucinations. Once I saw fairies running across my living room floor. I saw a pink unicorn. I never asked them to lunch. I usually just went to bed afterwards. Sometimes, fairies and unicorns will just do that to a person.
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