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Yes, yes I know. I’ve been slack in updating lately. I fully acknowledge it! The last few months have held so many ups and downs that I’m exhausted just trying to think about it. Trying being the key word there, as I’m already exhausted before even trying to think. Quite a conundrum, I’d say.
So, wow. Six months of treatment for my Lyme. I’m still trying to wrap my mind around it. The hardest aspect of this update is accepting that just a few months ago I hit the point where I felt as badly as I had last winter in November and December. That’s huge. I hadn’t felt like that in all of these months. And I hit this low while I was off my antibiotics. Am I really getting better yet? I don’t know. Right now, I don’t feel like I am. But I’m holding onto my favorite affirmation: Everything is getting better every day.
Today marks the end of my first week back on antibiotics after my Mayo experience. I’m still not feeling quite myself. I feel a disconnect between my mind and my body. My brain fog is insane right now. I can’t keep a thought in my mind. I’ve got a constant headache, and I’m so very tired. It feels as if it take a huge effort on my part to accomplish anything.
I have accomplished a lot lately, but perhaps I took too much on. Again, I don’t know.
My LLMD feels that being taken off the Levaquin is what finally brought my intracranial pressure down. She’s comfortable putting me back on her treatment plan, but we’re proceeding cautiously. I wish it could be more aggressive though. I want to see the end of the tunnel, not just know that it’s there. You know? So currently I’ve got a week on antibiotics and then a week off. I see her again on the 14th to check in and learn what will come next. She’s keeping an eye on my adrenal functions now too. I’ve begun taking a low dose of licorice extract each morning hoping to up my cortisol levels. Their low functioning might be what causing some of my deep fatigue.
In the meantime, my eye specialist isn’t completely assured by Mayo’s findings. I go in to see her on the 15th, and will hopefully be able to start lowering my dose of medication controlling my spinal pressure. We’ve found that many of it’s side-affects are actually my Lyme symptoms. It would be nice to know which they’re being caused by!
I’m still enjoying the time at my cabin. It’s been so wonderful to be out of school and able to relax finally. At the same time, it’s been a bit overwhelming so far. The sound level is tough. Loud sounds cause my dizziness and nausea to increase. I’ve got super sensitive hearing as a symptom. Hopefully I’ll still be able to be myself and have some fun with my family this week!
Peace and healing, molly
I’ve got a love/hate relationship with the rain. I love it, honestly. I just hate what it does to me. I love the sound it makes on a roof, or when raindrops hit a puddle. I love the smell it seems to create out of thin air. I love the clouds, the thunder, the lightening – I love it all. Except for how it makes me feel. Instead of being able to enjoy that fresh rain smell, or count the seconds between the lightening and the thunder, I’m in too much pain. 
It rained all day here in Minneapolis yesterday, and today wasn’t much better. And what have I done? I’ve spent the weekend in bed watching old reruns of The X Files and House with my mom. We’ve both been down for the count. We’ve got the aches that run throughout our entire bodies and the fatigue that makes it feel impossible to get up for that glass of water you know you should be drinking.
This happens to me nearly every time it rains, or the seasonal weather changes. My family lovingly refers to me as a barometer. I can often tell a day in advance of a big rain storm. It’s a talent, and a curse – because then I know what I might be in for, like this weekend. My acupuncturist feels that I’m just sensitive to these weather changes, more sensitive than I’d like at times.
But those terrible aches aren’t all I’m dealing with this weekend. My headache from 2 weeks ago hasn’t broken yet and we’re getting nervous. It isn’t constant, but it’s close. It may be a sign that my intracranial pressure is too high again, even though I’m on a new medication for it. My eye symptoms are coming back full force too. Now I’m seeing bright white flashes in my right peripheral vision 5, 6 , 7 times a day. I tried to count today how many I saw, but kept forgetting what number I was on! {Did anyone say brain fog?}
It does make me nervous. It’s very unsettling to be seeing these symptoms, not just feeling them but actually seeing them become more recurrent. We’re going to call into my doctor about it first thing tomorrow morning.
I’m also dealing with a lot of abdominal pain. I’m on a laxative right now to try to relieve any bowel problems, so we’ll see if the pain can be attributed to that. I’ve had this trouble before, but not since last year.
And as I say G’night to you all tonight I’m hearing the thunder I was anticipating hearing all day. Let’s hope tomorrow holds the promise of a pain-free day.
Peace and healing, molly
“May the pain you have known and the conflict you have experienced give you the strength to walk through life facing each new situation with courage and optimism.”
Photo credit can be found on Flickr.com
As promised, here’s a photo I took this morning after sleeping with the henna on all last night. So, it’s a bit darker now. I love the design though! I consider a swirl symbol to be very symbolic of me and my life. Something like a trademark? Who knows. But I had to include it somehow.
Shall I share the ironic aspect to this design with you? I didn’t realize it until this morning as I was peeling the dried henna off. I added several dots in between the rays of the sun. {Yes, it’s a sun} Now you can’t tell from this particular picture but I’m seriously covered in moles. So now it looks like I just drew in 20-ish more moles than I actually have. And that one dot in the middle of one of the top rays? Yeah I didn’t draw in that one! See, you can’t tell the difference can you? I still love it though :)
As far as my progression with the Cat’s Claw. Whew. Day 2: Today was a long day. My mental capacities are barely discernable right now. I feel like I’m sifting through sludge when I try to think. Or write. Writing is becoming more difficult, which is a painful acceptance. I’m hoping this doesn’t continue too long. I’m also having chest pains, dizziness, loss of appetite, and I’m having some difficulty breathing. But once again these are all normal symptoms for me. Do I attribute them to the Cat’s Claw? I don’t know. I wish I did! Some of my eye symptoms are coming back too. That’s a little nerve-wracking. I’d really rather not have to have another spinal tap before heading off to Mayo.
I think that’s it for tonight!
Peace and healing, molly
“Never let go of hope. One day you will see that it all has finally come together. What you have always wished for has finally come to be. You will look back and laugh at what has passed and you will ask yourself… ‘How did I get through all of that?”
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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
That only sounds a little menacing! As I promised, here’s my update from my monthly LLMD appointment. It was a few days ago, I admit. But I was thoroughly exhausted that night as well as yesterday. I blew off some steam in the meantime by sewing up my own little storm. :) And what did I make? A headband that turned out to be too small and a beautiful new pillow! If I’m feeling ambitious I’ll see if I can post a photo later.
Anyway, back to my update. It was a very busy, and time sensitive schedule that day. First my dad rushed home to take me to my eye doctor. It was suggested (by just about everyone) that I see him so that he could dilate my eyes and check them out a bit closer. He thought he might be able to see if there was something causing the double vision of late. Turns out he did find some signs of inflammation in my eyes and some small hemorrhages.
His exact words were: “ I saw some small hemorrhages, but it’s nothing major. Lets just make sure she comes in for another dilation in a few weeks to keep an eye on it.”
Hmmm… as I told my dad, I don’t associate “nothing major” with the word “hemorrhage”! It seems to me to be something that’s not at all good and should be avoided. But, what to I know? So, I go back in two weeks and we’ll see what happens. In the meantime we’re getting a second opinion by a Lyme-literate optometrist recommended by my LLMD when I told her what he had said. Which, leads me into the second phase of that time-crunched day….
After that appointment my dad rushed me downtown where he dropped me off at my LLMD’s office to meet my mom while he went on to a meeting. And my mom and I preceded to meet with my LLMD. (Very synchronized!) We talked about my latest symptoms and discussed my options for my treatment plan.
She wants me to cut down (majorly) on my refined sugars and carbs. And that means a switch to rice pasta, and no more French bread. Eating those foods allows yeast a hospitable environment in my body since I’m taking so many antibiotics. I’ve got be careful about my yeast levels since the antibiotics are killing off not just the bad bacteria, but the beneficial ones as well.
Since I’ve been blacking out pretty frequently after I stand up, she’s suggested that I need some additional adrenal support as well. So I’ll be up-ing my intake of vitamin C (Smoothies!!) and I’ve begun drinking licorice root tea. It’s not bad; it’s got a very raw taste at first and then suddenly it’s cooling and coats your mouth and throat. I think it takes some getting used to!
I’m also going to begin taking Samento every day. I don’t know much about it, so I’ll let you know as soon as I do. What I know so far is that it’s a natural antibiotic that has been shown to fight Lyme. Sounds good so far! I just have to be careful to start with small dosages and work my way up to higher ones slowly because it can cause herxs as well. My LLMD has also requested that I start taking a lipoic acid supplement every day. We’re looking into that this weekend.
My list of everyday supplements, medications, vitamins, and practices is getting longer! That’s for sure. I’m struggling to keep track of it all, but so far I think I’m doing pretty good.
Peace, molly
“Everything is getting better everyday.”
Hey everyone! It has been so long since I felt able to write, it’s good to be finally back to normal. I’ve missed this nightly ritual in the past weeks. And, let me just thank all those that continued to check up on me while I was “missing in action”! As I’m sure most of you know, or have presumed, I had a pretty nasty and scary herx reaction that lasted 3 weeks. I’m much better now, and have been steadily improving for a week.
It was horrible though. I had heard and read about other’s herxs but until you’ve had a bad (*read that as mind numbingly awful and unbelievably painful) one yourself, it’s truly hard to appreciate the meaning of the words. But, I survived. Granted, it took a month’s supply of migraine meds, equal amounts of pain killers, a trip to the ER, several visits to my chiropractor, as well as a new (lesser) dosage of antibiotics and a heck of a lot of detoxing. But I did it! Thanks to my amazing parents who were there for me the entire time. I couldn’t have done it without them.
My latest road bump as been double vision. It’s been, oh almost 3 weeks now (do I sense a pattern??) I think. It started during the herx and we just assumed it was part of the migraine. But that didn’t make sense when the migraine finally settled down and I was still seeing people with 2 heads and walking into walls. Thinking it over it actually started beforehand with blurry vision, that gradually became double. It’s been tough, especially with my already-present vestibular disorder that causes dizziness. Let’s hope this doesn’t last too much longer… But seriously I have been improving. This week I’ve been able to keep the eye patch-wearing to a minimal amount and have discovered what triggers it so I’m better able to stave it off. I’ve got an appointment with my LLMD (Lyme Literate Medical Doctor) this week, so we’ll see what she has to say about it. Nice photo though huh? I’m thinking the black is a little boring…. I’ll see what I can do about decorating it :) It needs something…. thoughts anyone? I’m thinking of painting one of those dizzying spirals on it so that everyone who looks at me gets just a wee bit dizzy… fun, no?!
In other news, I’ve been dizzy and unbalanced (did I say that?) enough to break out a cane. We didn’t have one that fit me anymore so I borrowed my brother’s extra one. It’s nice to have, but I hate using it. I always did. For one thing, it’s beyond me on how you walk with them. I mean, really, it’s harder than it looks! I’m also beginning to get more and more into the book Cure Unknown. My LLMD suggested I read it as soon as my diagnosis was confirmed, but I just haven’t been too excited about it until now. I’ve heard enough about it though to keep me reading, little pieces at a time. It’s finally all clicking in and making sense. It’s actually a pretty good book; I’m glad we bought it. It’s a good reference. As soon as I’m done with it it’ll be my mom’s turn.
More good news, it’s my spring break this week! I’ve got a million things to do and only a few days to do them in. We’ll see how that works out. It will give me the time to get back my blog however!
Peace, molly
“Through humor, you can soften some of the worst blows that life delivers. And once you find laughter, no matter how painful your situation might be, you can survive it.” – Bill Cosby
Hello all! Well, this is just a quick little update for you all, because as some of you have noticed, I’ve been missing for the past few weeks. I started a new antibiotic 2 weeks ago which about 12 days ago caused a major herx reaction. It’s been a miserable, and very long 2 weeks. It was the worst migraine I’ve ever had, and I’m still working on detoxing to get rid of it. I’ll explain in a few days, but I just wanted to give you all a little heads up as to what’s been going on.
Thanks for checking up on me!
Peace, molly
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