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Ook. Where was I? Spinal tap, new medication, new specialist… that sound about right? Let’s see how much more I can relate of my backed-up updates before my medications kick in and I’m falling asleep on the keyboard. I’m so relaxed right now. I just got out of a nice hot Bergamot essential oil Epsom salt detox bath (say that 3 times fast!) and am sipping my fiber supplemented chamomile tea :)
So back to my story…
A few days after my visit with the eye specialist I had an appointment with my LLMD to go over my progress and make assessments. That went really well. I listed off my new symptoms which were mainly increased and near-constant fatigue. It’s to the point lately where I can’t stand up for more that 15 or 20 minutes without sitting. I get too exhausted and feel faint. My dizziness has increased as well, so much so that I’m carrying a fold-up cane with me in my purse to pull out in balance emergencies. Thank you Gramma Gini!!! She had it sent to me as a surprise, and it’s just the sweetest cane I’ve ever seen. It’s got pink flowers all over it, and they always remind me of her- the pink queen! I had a whole list of other symptoms, but we don’t have to re-hash everything so I’ll skip them.
She felt that my adrenals really need to be tested. My exhaustive fatigue could be being caused by low adrenal functions. My blood pressure is also very low lately, something else she’s going to be checking up on. So I have a spit test to take at home. (I’ll tell you more when I know more.) And I’ll be going to the hospital soon to have a tilt table test done. That’s the test where I’ll get to be strapped to a table that moves up and down. I believe that will be testing for blood pressure. My LLMD believes that I may be experiencing a syndrome called POTS, Postural Tachycardia Syndrome. This happens when the body can’t adjust fast enough when a person changes positions such as standing up and then lying down. I often get completely and utterly exhausted very suddenly and my dizziness will increase. This happens when I’ll have been standing or sitting and change positions, often to laying down. When this happens I’ve even fallen asleep from it. And those of you who know me well know that I don’t take naps at all! So it’s something we’re keeping a close eye on.
I also brought up the option of pulsing some medications this summer when I didn’t have school to worry about. She seemed open to the idea. So I’m looking more into that. But I feel it’s a step in the right direction for me. I can explain pulsing another night, cause I’m slowly fading over here.
One more significant change I’ve made…I’ve switched to almost completely wheat-free foods. I’m still eating dairy, but have cut out most refined carbs and refined sugars. So, I’ve basically switched to my mom’s diet! Although, I’m not going completely vegetarian yet. Baby steps guys, baby steps. This has taken me a year to finally decide to do it. The deciding factor? Yeast. The less refined foods I eat, the less yeast problems I’ll have.
That’s a major antibiotic issue, yeast. The meds kill off all bacteria in their paths. Good, or bad. So I’m taking probiotics to add some good bacteria back into my body. And I’m eating less foods that attract yeast in the body. So I’m excited at where I’m going so far. The journey ahead is looking good, tough, and long, but good.
Speaking of my journey, I’ve got another appointment tomorrow morning with the eye specialist. So we’ll see how it goes! Wish me luck! I have my fingers crossed that I’ll hear the rest of my spinal tap results.
Peace and healing, molly
“Once you replace negative thoughts with positive ones, you’ll start having positive results.” –Willie Nelson
I honestly believe that it’s only when I’m unable to write that I realize how much I love it. Once again I’ve been too sick to write any updates lately. The sheer exhaustion and fatigue coupled with everything else that’s happened recently has daunted me when it came to writing. But, I’m back, willing and ready to pour my adventures out for you all to read! It’s been nearly a month since my last post, so I apologize in advance if this turns out to be a long-winded addition. I’ll try to summarize, if not for the sake of my readers then for myself!
Well, to start with, I told you all about the small hemorrhages and swelling my eye doctor found in my eyes last month. Soon afterwards I woke up one morning unable to see clearly out of my right eye. It looked like a dirty windshield. I kid you not! I had a mass, not one or two, but a cluster of 30 to 40 black lines, floaters, and smears in the center of my field of vision. It was so scary! We waited it out for a few days, but finally we went in to see my eye doctor about it. While he had dilated my eyes he was very concerned because the swelling and hemorrhages had increased “10 times” that of what it had been only 2 weeks before. So, he promised to call our specialist we were waiting to get into and a few other retinal specialists he knew. Turns out that a few hours later my mom and I were back in the car and heading for a specialist that my doctor had recommended; they were in a agreement that I needed to be seen ASAP. (The cluster has since disappeared, and I’m told that it was nothing to be concerned about. Yeah, sure. It actually cleared up on it’s own since my doctor couldn’t do anything about it.)
I went through the works there, eye tests of all kinds and plenty of pictures. They wanted to inject a vegetable dye into a vein, but that idea was nixed when after 5 tries they couldn’t get a vein. I felt so bad for the poor woman woman working on me. But it was funny; I’m not going to lie! I had bandages on both hands and on one arm! Anyway, back to the story…. the doctor was what I’ll term a Lyme-skeptic. He questioned my long-term antibiotic usage, among other things. But he recommended an MRI be taken of my eyes and the surrounding nerves.
Now, I’ve had MRI’s before. So I wasn’t worried. But I had forgotten how absolutely horrible they are. Truely. The noise is unbearable, always switching pitches, tones, and volumes. My mom said she could barely stand it, and she was in the waiting room down the hall! I was in the machine for 2 full hours. I’m just thankful it didn’t feel like 2 hours to me. I was able to breath and meditate my way through it. My #1 trick? I just kept telling myself that it had only been 20 minutes so far. And then later when I wanted it to be OVER I told myself “oh, it’s only been half an hour.” And so on, and so on. And it worked! I swear I must have told myself that it had only been 20 minutes for the whole 1st hour. But OhmyGod was I thrilled to get out of there when it was over. I’m lucky that I don’t get bored too easily.
Those results were negative for all masses. So, no cancer. That was a relief! The next step was to see a retinal nerve specialist that my LLMD (Lyme-Literate Medical Doctor) referred me to. She’s very nice, and for me to say that I like a doctor is a MAJOR feat. She did all the same tests, dilation and all. I swear, I had avoided getting my eyes dilated for 4 years and now I’ve had it done more times than I can remember in the past month! But, I digress… She was concerned as well about the swelling and hemorrhages she saw. She explained that on a scale of 4 mine would be a 2.5. So, up there but not the worst she’d seen. The kicker was that after she had seen me, done her own research, and talked to my LLMD, she decided that I needed to have a Lumbar Puncture. So, in layman’s terms a spinal tap.
Between all my doctors, they managed to get my in for that just 2 days later. I of course did my research and read up a bit about it. But, overall I don’t think I was that nervous about it. I knew I could get through it. And I did! (The nurse that time was awesome! She hit my vein on the 1st try :) )For the spinal tap itself I was lying flat on my stomach while the doctor used an x-ray to position the needle correctly. It was painful at times, but for the most part it wasn’t unbearable. It was some of the oddest pain I have ever experienced though. It was like a dull, pressure in the very inside of my body. It felt so deep! I knew the doctor had gotten in when my back started to feel wet. He wasn’t too talkative, but I asked him a few questions along the way. First they took an opening pressure of my spinal fluid to see if it was too high, like they suspected. And, it was. I asked him how high and he said he didn’t like to see a normal pressure be above 20 and mine was 28. So, how bad that is… I don’t know. Then for the rest of the procedure I was really just lying there while the doctor took vials of fluid for testing and lowered my pressure. (The doctor did show me what my spinal fluid looked like though. That was interesting! It looked pretty much like a vial of water.)Then I was done! Again, I must have an awful perception of time because it didn’t feel like it took as long as my parents told me it had been. Afterwards they wheeled me out to a bed where I had to lie flat for an hour before going home. Then I pretty much stayed flat for the next 2 days hoping I didn’t get a spinal headache which is sometimes a side affect of spinal taps.
But, I got the headache anyway. So I spent most of Easter weekend flat on my back as well with that. With a spinal headache it’s very painful to stand up or walk around. But, when you lie down flat the pain dissipates. Fortunately, my teachers were awesome and so understanding! They all made sure I knew I could make up work when I was feeling better. And, I still had a nice relaxing Easter with family. Chris was able to come home, and we had a casual Easter brunch. Then that night Chris, Tara, and I hung out playing cards and talking while my mom and dad took an escape night at a hotel downtown for their 30th anniversary!
I still don’t know all the results from the spinal tap, but I’m hoping to get those by the end of this week. The preliminary ones showed nothing abnormal. -Yay!- The rest we’re waiting for had to be sent to Mayo. I’m still seeing the specialist, about every 2 weeks at this point. She’s got me on a new medication to lower my increased cranial pressure. And so far my results are looking good! My scale rating is down to a 1.5 or so, as of last week. No one is absolutely sure what caused this pressure increase, but it could have been either one of the antibiotics I was on in January or it could be just another complication/symptom of the Lyme itself. But I’m being closely watched and monitored.
Well, that’s all I can do tonight. I’ll continue the adventures tomorrow everyone! So, TO BE CONTINUED……
Thanks so much for your support through all of this; it means the world to me.
Peace & Healing, molly
“Some things are so unexpected that no one is prepared for them.” –Leo Rosten