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One of the worst aspects of Lyme is the setbacks. Lyme is a disease that keeps on giving – one new symptom after another.
I’ve been quiet for so long on this blog, but I’ve thought about it and you who read it, nearly every week! I spent a long time this afternoon going back into my archives and rereading many of my posts. I’ve had so many up’s & down’s while treating this disease, I’d forgotten most of them. Perhaps I chose to forget them, who knows.
I think it’s time now for me to post an update on my progress and my life (or lack thereof) since it’s been so long since I have.
2011 has not been the best year for me, medically speaking. It feels like one big experiment-gone-wrong. I don’t remember a time this year that I fell well, really well. And it’s June already. Half of the year is gone!
I’m going to be honest. I feel worse now that I did at this point last year. Last summer I was in much better shape! I was excited and felt like I was finally on the right track in my treatment. Now fast-forward to this spring… I’m having a repeat of spring 2009. I’m going through the exact same symptoms, diagnoses, and experiences. I feel as though I’m reliving this part of my treatment.
Today is day 36 of a life-consuming pressure headache. At times, I’ve become non-functioning because of the pain of this headache. Some of you may remember I went through this in 2009 as well. My POTS (Postural Orthostatic Tachycardia Syndrome) is back with a vengeance, and my fatigue is insane. I don’t know about you, but I live on my couch. We have a symbiotic relationship.
Since I was following a similar pattern to 2009 we immediately thought of my eyes. Were my optic nerves swollen again? So in I went to be checked out. After many weeks of patience, and follow-ups, I was told on Friday that I need another spinal tap. I had 3 in 2009. I was really, really hoping those would be enough for a lifetime! I’m scheduled to have my 4th done this Thursday morning. Better sooner rather than later. I’ll know the results sooner this way, and hopefully have some answers. My neuro-opthamologist is LL and is concerned that I may be experiencing pseudotumor cerebri, a condition where the brain behaves as if there is a tumor present, but there is none. The number one symptom of this is unexplained increased intracranial pressure, which is what the spinal tap is for on Thursday.
However, I don’t know what to wish for. Do I want to have pseudotumor cerebri – another medical condition that is reversible, but needs medication and/or invasive assistance? Or do I wish for a normal, low pressure from the spinal tap and therefore have all of this be attributed to random Lyme-related symptoms? I just don’t know.
In addition to that development, I’m now completely off of my Lyme protocol. My LLMD and opthamologist told me to back off for now until things calm down. I was put on beta blockers a few weeks ago to calm my rapid heart rate and I’ll be referred to a cardiologist sometime this summer. I think the beta blockers have helped the POTS a bit and the fatigue, thankfully! My LLMD believes that m adrenals are a problem again and I’m most likely iron-deficient. I had a slew of blood tests done on Friday and I’ll learn more in a few weeks.
I’m afraid my LLMD is feeling overwhelmed by me. I’m not getting any better yet, and she’s afraid of making me worse. I’m taking this all one day at a time, but I really am beginning to feel overwhelmed myself!
I’ll be back soon. I’ve missed you all!
Wishing you health & healing,
molly
Every day is a journey filled with twists and turns. Every day, if you smile, you will feel alive, my son. — Santosh Kalwar
I’m tired. More than tired. I feel… weary. That’s just not a pretty word. I hurt. I’m in pain. I’ve had a long weekend, and I haven’t even done anything other than rest. I can tell I needed it. And, I can tell I still need more of it.
But…
It will be ok in the morning. I think so. It will, right? It’ll be better. Every day is better than the last, no matter if I can feel that or not. I know it. That’s what matters. Each day is better than the last because I’ve survived one more day of treatment. I’m one day further in my journey, and I have less road to travel tomorrow, and the day after.
We all keep going. And somewhere deep down I think we all need to know it WILL be ok in the morning. The sun will rise, time will tick by, and we will continue our fight.
Keep up the hope,
molly
Toxins.
My LLMD brought up The Big Bad Word at my appointment this week. I hate the word toxins. Even more so do I hate the word toxic. I’m a visual person, and the word “toxic” brings with it only bad images.
I see hazmat suits and warning signs.
My LLMD appointment was on Tuesday. My LLMD is moving to a new building this month, and the next time I see her will be there. I can’t wait. For me, atmosphere means a lot. The clinic I have been seeing her at for months makes me ill. They have those lights that buzz, the nurses wear too much perfume, and the overall feeling of the place is sterile. It has nothing that stimulates healing for me. I really hope that the new office will be more suited for her; I really do. We patients deserve it.
My appointment can be summed up by the title of this post: The Big Bad Word.
I went in feeling that I was herxing. I know what this feeling is. My body is slowly becoming overwhelmed by toxins. The newest antibiotic trio has been working. But, is it too much? If you’ve been reading my blog for a while you’ll know that I’ve always been sensitive to treatments.
I feel as though I take two big steps forward in treatment. I make progress. I taste it. Then, my body forces me to back up again. I feel as though I’ve been in the same place for months. What has changed? Very little, actually. I had those great 3 weeks, and since then I’m back to where I was.
I’m frustrated.
My body is trying desperately to detox. I’m breaking out in whole-body sweats. My skin literally itches. My body is showing signs of trying to shed these toxins but it needs help. I left her office with the names of two new supplements to add to my regime which will aid in the detoxification. One I still need to order, and the other is in the mail already. I should be starting at least that one next week.
My antibiotic dosage has also been slightly reduced in order to help my body adjust. We’ll see if between these things I’ll see a difference. I hope so. Right now I’m living in a fog. My head feels as though it will explode at any moment, and my overall pain levels are increasing. My fatigue has struck again. What I laughingly refer to as my memory is becoming tiresome. I’m shaking like a leaf.
My daily functionality differs day by day.
Today I had plans to go shopping with my best friend. We ended up staying at my house, making popcorn, and watching Robin Hood: Men in Tights. All in all – it was a great day!! I’m grateful for it. I had so much fun. I laughed. I smiled. We talked. I loved this day. But our plans changed because suddenly this afternoon I was hit unexpectedly with a wall of fatigue.
I literally turned off my computer, the lights, and fell asleep on my couch for 20 minutes. I never take naps. When I do, I know it’s serious.
Maybe that’s why I enjoyed Robin Hood: Men in Tights so much today… humor to heal the herx? I’m willing to give that a try. Anyone ever tried detox by laughter?
Laughter heals – that much I know. But does it detox?
Well, it can’t hurt :)
Wishing you health & healing,
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
First off, did any other bloggers watch the new House episode about the compulsive blogger? Whew. I’m not going to lie – that just made me laugh! I’m happy to know that I’m not as obsessive about this as I could be. Not to say I don’t love you all, but I’m convinced my life must just not be as exciting as hers (thankfully)! I’m enjoying the relatively free schedule I’ve got before the storm of Spring of my senior year arrives with the melting of the snow. But, that’s another post altogether.
I want to talk about the actual storm of the moment.
Today a friend asked me how I was. It’s a simple question. I get asked it all the time, and out of habit I always say “I’m good!”. Sometimes, I’ll give out an “Oh, I’m ok.” or a “Eh, I’ve been better.” I’ve learned to tell when people ask this seriously, and when they’re just asking to ask. Today, my friend was serious. They cared about the answer. They wanted to know, and I didn’t want to mislead.
I stalled for time. Putting off the inevitable, I guessed.
Finally my friend asked why I was avoiding the question. And at that moment it struck me that I had been avoiding answering the question because I simply didn’t know the answer. They were serious. I was too. I didn’t know how I was. I don’t know how I am.
I’m not good. But I’ve been so, so much worse.
I continued to give this some thought before I answered. I trusted my gut reaction, and blurted out that life felt like “a blur”. What a contradiction we live treating this disease. Our days feel long. Sometimes, the symptoms make it seem as if a day is an unending trap. But our lives are slipping away faster than we want to accept, at the same time.
These long, long days mixed with the time slipping through my fingers feels like a blur that I can’t see through.
I want a pause button. I don’t want to fast-forward, and I don’t want to rewind. The past is over and finished – it’s meant to be built upon and learned from, not relived. And the future is full of possibilities that I can’t even imagine yet. I want to live my future as it comes, not skipping ahead. But right now is going too fast. And too slow. I want to pause. I want to take a time out. I want to step out of life for a while and return in this exact moment, feeling more prepared to live it.
I didn’t know what to say to my friend. I explained the blur sensation, and remarked about the good mixing with the bad. And with some prodding, I thought about what it is that’s going on.
I’m reliving symptoms that I’ve been trying to escape for years. Not only that, but new ones are appearing. I can live with that. I can even accept it. But I don’t have to be happy about it. And, I’m not. I’m frustrated. I want this stage in my treatment to be finished. I’m ready to feel better now, please.
My doctor has me finishing up a last month of Mepron – the antibiotic from hell. Or, at least one of them. At my most recent appointment after being taken off this medication my doctor listened to me describe the herx reaction. It was… extreme. It was decided that my symptoms off of the Mepron are worse than the damage it is doing to me in the meantime. I’m still not sure how I’m supposed to take that! So here I am back on the Babesia kick meant to keep me from getting worse. In essence, I’m fighting to keep the small progress I’ve made.
And yet, I don’t feel better. I’m living with a constant headache. I’m dizzier than I have been in years. My joints are swollen and painful. My entire body aches. I have no appetite. I’ve got the sweats, and a near-constant temperature. The brain fog is intense. My memory loss is becoming frightening. And I’m not giving up.
I won’t let this disease win. This round isn’t over yet.
I’m taking each day as it comes – the good with the bad. And I’m trying to make the most of the good. But I’d be lying if I said I’m ok. I’m not. I’m just trying to muddle through. Tonight I’m embracing my frustration.
Ask me if I’m ok tomorrow.
I may not have a pause button, but I’ve got my first acupuncture appointment of 2010 tomorrow morning. I’m so happy! I can’t wait for it. And I’ve had craniosacral therapy again twice this month already with another appointment this Friday. That’s almost as good as pausing, isn’t it?
May we all have better tomorrows, always. Each day we’re growing, changing, learning, and best of all, we’re healing. We’re fighting. Each day is bringing us closer to our hopes and dreams.
Yours in peace and healing, molly
Moments of true silence are a treasure to me. I feel like I’ve received a present I had forgotten to ask for. After seven years, I hardly notice the ringing in my ears anymore. It’s not constant. At times it gradually becomes worse enough for me to notice. Time passes. I muddle through. Next thing I know, I suddenly don’t want to bash my head against a wall any longer. It’s quiet. Silent. Calm. Peaceful. It’s wonderful.
I can go months without thinking about it. Then… BAM. It hits me. The world isn’t buzzing. There is no small hum. There are no bells, no rings, no creaks.
Didn’t I say it was wonderful? Sigh.
But it’s the small things that keep us going. I’ve learned not to take the silence that I’m given for granted.
I love to listen to the quiet.
I feel like I could bask in it.
I can hear myself think.
Then reality tumbles in and breaks me out of my reverie. The clock is ticking in the room next to me; the refrigerator is kicking in, ice is dropping; the heater floods on; a cell phone vibrates and the computer begins humming.
My head begins to throb again.
The world is a loud place. On the other hand, so is my head. It’s still a moment to celebrate when one of the two calms down. For now, the moment is lost. I’m waiting for the next one. Waiting, and wishing.
I’m jumpy lately. I jump when my name is called. I jump when I see somebody walk into the room. I jump when my dog’s toys squeeeak. I jump when my phone goes off. I even jump when my phone goes off on vibrate!
In short, I jump. Do you jump?
I feel like my nervous system has gone haywire on me. I’m having nerve pains everywhere, and like crazy. I can’t stop shaking. And now this sudden jumpiness. More Neuro Lyme symptoms?
What gives?
This must be a new level of herx.
More soon, love you all. I’m dead on my feet and my book is calling to me.
“Happiness means quiet nerves.” – W. C. Fields
I’ve given up on the idea of predictability. It’s a myth, a scam, a relentless tease. At least, it is when you’re living life with Lyme. I’m not trying for the “half glass empty” approach, or the storm cloud affect. No I promise I’m not. I’m as hopeful as ever. I’m simply accepting reality.
I’ve known this for a long time. If this disease had an owner’s manual it would be remiss to omit it. But sometimes Lyme can just punch you in the stomach. Literally.
My last post was a celebratory one about the tilt table test results. At the time, I said this:
I was also having some horrible abdominal pain. My entire abdomen is swollen and painful to the touch right now. Yuck. I wish my doctor appointment was sooner!
Let’s see… that was on Friday the 22nd. A week later (last Friday) I was back at the hospital again. But this time I was getting an abdominal ultrasound.
The pain, and swelling, increased each day until my appointment with my LLMD on Wednesday. By that time the pain was literally in my entire abdomen. But it had localized with the most severe pains coming from underneath my ribcage on my left side. Yep, my spleen. Great!
I was measuring the swelling. At one point it was almost 3 inches more than my normal measurement. 3 inches! It stayed pretty steady around an increase of 2 inches for the week, however. The pain was dull, shooting, stabbing, burning – you name it. Sometimes I couldn’t even sit up straight.
My LLMD felt around (painfully!) and was worried since she could feel the tip of the spleen sticking out from the ribcage. I should mention that she had checked in early December and didn’t feel a thing. So, off I went for a blood draw and an ultrasound appointment.
It wasn’t too bad. The swelling had (of course) gone down since Wednesday by Friday. But the lady was so nice, and so quick about it. My mom and I grabbed a cup of tea at the coffee shop on the way out, and were home just as the sun had fully risen. Why it had to be that early I have no idea. I’m a person who doesn’t function until noon on a good day!
Anyway, it was Friday so we put a few calls into the office to make sure my Doctor got the results before the weekend, and surprisingly enough she called back with results in a few hours.
Normal. Let me say that again, louder: NORMAL.
When my mom told me I think my reaction was, “WHAT?!”
Something was, and is, seriously wrong here! How can everything look normal?! Ah. That is one of the great Lyme mysteries. We all ponder it, turn it over in our minds, and eventually fume about it.
My LLMD believes that my entire abdomen is enflamed and irritated from organs to intestines. My are nerves sending out haywire responses and my body doesn’t know what to do with them. Funny, neither do I.
So, I’m still in pain. It still hurts to touch my abdomen, and doing so causes a wave of nausea. The pain hasn’t let up since last week. I’ve lost my appetite almost completely. And, I’ve given up tracking the swollen ups and downs.
I’ve accepted that this is a phase in my treatment. Granted, an unexpected one and yes, unpredictable. But I’m not happy about it. Herx or med reaction, I don’t know. I only know that I haven’t lost all hope that it’ll be better when I wake up in the morning.
Much Lymie <3, molly
“It’s something unpredictable, but in the end is right.” ~ Green Day
An update from what transpired during the rest of my LLMD appointment will be coming this week. Mepron, oh Mepron!
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