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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
This morning a cloud lifted and let a few precious rays of sunshine into my life, even if it was for just a few hours. Today was one of those rare days amid Lyme Disease treatment that reminded me what I’m fighting to have. I felt human today.
It was wonderful not to feel like I have lately. And not to look like I do in this picture! These last weeks have been some of the worst I’ve had in the past 2 and 1/2 years. And so, I had to share this moment of celebration with you all!
I’ll be back soon to update you all on what’s happened lately. Friday is a big day for me. I’d appreciate if you could say a prayer, send some love, light, & support my way. Or just keep me in your thoughts!
Much love.
molly
There’s a running joke in my family that I’m a “medical mystery”. I went from normal to suddenly, devastatingly ill far too quickly. No doctors could fully answer all of our questions. I was bounced around from one specialist to another for years. I was unhappy, and honestly, I was angry that nobody could find a solution.
That is, until two years ago.
I began my Lyme disease journey on January 1st, 2009. I still remember staring at that blue Doxycycline capsule for a long few moments before I finally took the plunge and swallowed it down, along with some apprehension and a lot of relief. Finally somebody had looked at me as a whole, sifting through the symptoms and found an answer for me!
Lyme. Bartonella. Babesia. The list goes on.
Two years later I’m still treating. And, it turns out that I’m still that “medical mystery”. Above all else in a doctor I want them to be honest with me. I need them to talk to me so that I learn to trust them and they trust in me. I love my LLMD dearly. She has been a rock in this journey. However, she’s not strictly speaking an LLMD. She treats Lyme, but not exclusively.
In January she was honest when she turned to me in her office and told me that she didn’t know what to do next. Her treatment regimens weren’t working with me as she had expected them to. She is afraid of making me more toxic, creating more harm than good. I don’t blame her. I just wish this weren’t the case.
She wants me to visit another Lyme specialist for a consultation and receive a second opinion. I was instructed to see a neurologist for my headaches, and to see my neuro-ophthalmologist for a check-up. I feel as though I’m back where I was two years ago, being doled out to different specialists while they scramble to solve the puzzle.
Molly, “medical mystery” at your service.
I haven’t lost hope. No, as I said last week -“I feel as though I’m adrift. I’m bobbing along in the waves waiting for the clarity that calm waters will bring.”
I’m waiting for my turn to discover those calm waters.
Much love,
molly
“Everything will be okay in the end. If it’s not okay, it’s not the end” ~Unknown
I’ve always been a firm believer in the knowledge that life isn’t all black and white. We live in the gray, and we make the best we can of what we’re given.
However… I never thought that the concept of being “healthy” would appear to me as something nondescriptly gray. Theoretically it’s such a clear-cut, simple issue. Not always so.
I feel as though I’m adrift. I’m bobbing along in the waves waiting for the clarity that calm waters will bring.
I have so much to share with you! You’ll have to be patient with me as I grapple with the correct way to explain what has happened to me in the last few months of my Lyme treatment journey. Tonight, I’ll share the most important part.
My doctor and I (for various reasons I’ll explain at some point) decided to take me off of all my pharmaceutical antibiotics this month. It’s been just over two weeks now, and I’m lost. I have absolutely no idea how my body feels about the change. I have had such trying months since November, that I was truly not sure what to expect.
I’m being treated for an intestinal yeast infection in the interim. Which – if I may sideline for a moment – sucks! My abdomen is still swollen and I believe I had a significant herx right after beginning treatment.
Since the 11th I have had days some good days, and some horrible, and too many in-between. Nothing is constant. I’m searching for clues, taking mental notes, observing myself. Some symptoms are better and others are worse.
I’m adrift, keeping my head above water in the gray. I’m frustrated. But at least I’ve earned myself a medication vacation for a while :)
Wishing health & happiness abound,
molly
“Each time we face a fear, we gain strength, courage, and confidence in the doing.” -Unknown
It’s so hard to gauge where I am in my healing process. And. it’s hard to admit that, too. I’m functioning… to a point. I’m not spending every waking hour on a couch anymore. But I’m not even close to feeling how I wish I were feeling. I like to think that I’m in touch with my body. I have an awareness that it’s taken me years to become comfortable with. Lately, I feel disconnected.
I’m not even sure I can put my finger on a the words to describe how I feel.
At my last LLMD appointment my doctor looked at me and asked me honestly what timeline I had in my mind for continuing treatment. I was quick to say that I didn’t have one. I know that I’ve got years, and years ahead of me before I’m where I need to get. I went untreated for sixteen years. I’d rather not disillusion myself about that.
After some discussion we decided to back down on my treatment. Again. It feels right to me, yet at the same time it’s so absolutely counter-intuitive. My first reaction is to treat the crap out of these infections. The harder and quicker we do that, the sooner my life will be in my own hands again. I’m doing my best to not disillusion myself here, either.
Sometimes it’s just time to walk away. Find the next window to climb through, since doors seem to be barred.
My LLMD uses both traditional antibiotics as well as herbals to treat Lyme. I’ve always used both in my own treatments. I felt that taking the middle road worked for me. It made sense.
Last month I stopped taking the herbal tinctures. I still have supplements galore, but the tinctures were too much for my poor body to handle along with the antibiotics. So for now I’m depending on my three antibiotics to do their job… and I’m doing the best I can to cope with the havoc I feel within me.
I’m having migraines again. They suddenly reared their ugly head last month after about 5 months without them. Needless to say, I was not happy to have them back. When I’m not having a migraine, I’ve got a headache. Always. I have had rashes appear overnight. My abdomen is swollen again. I ache. And I cannot for the life of me stop sweating. (Yes, I know that’s gross. I also know many people reading this will understand.) Hot sweats, cold sweats – you name it. They won’t stop. It’s incredibly uncomfortable, let me tell you! I can be at home resting, out with friends, or just sleeping, and I’ll break out in a sweat. UGH. On top of that I still haven’t gotten rid of the shakes.
These things could point to toxicity and my body trying to detox it. Or, I could be having a herx. I’m really not sure! My LLMD was worried about neurotoxicity at my appointment. By no means am I an expert… but that just doesn’t sound promising…
My next appointment is in January. Actually, I think this is awesome. My appointment is on 1-11-11 at 11 o’clock. Totally by accident too!! We’ll see what happens then. In the meantime, I’m going to do all I can to help myself make it through the craziness that is the holidays.
Today was actually a great day! I took it easy because last night I went out. I’m SO proud of myself. I managed to take a shower, wash my hair, get dressed, make lunch/dinner, clean my room, and reacquaint myself with my make-up – all before I went out to surprise my brother for his birthday. My sister-in-law arranged for family to meet him at his favorite comedy club for a show, and he had no idea!! It was so much fun! I haven’t laughed that much in ages – and those that know me personally will vouch for the fact that I laugh a lot! I’d never been to a live comedy show, either. So it was exciting :)
I was worried that today I’d be paying for it, but I feel pretty good! I’ve got my normal headache, and I’m a bit dizzy when I stop and think about it. Oh, and those sweats haven’t disappeared. But I was expected much, much worse. YAY!
I woke up late this morning. The house was empty, and peaceful. My whole day was like that. I even felt a huge creative spark this afternoon. I sat down with my beads for hours. It felt so good! I think it had something to do with the fact that today I’m wearing my purple leggings… color always inspires me.
I’m hoping the rest of my week will continue to look up!
Peace and healing,
molly
"Strength does not come from physical capacity. It comes from an indomitable will." -Mahatma Gandhi
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
I’ve been meaning to write this for over a month now, but I’ve never gotten very far on it. Oh, I’ve opened my writing program, dashed out a few lines now and then, but it never felt right. Nothing ever clicked. Nothing ever seemed right. It still doesn’t.
But I’ve decided {albeit belatedly} that this is what needs to be told. This difficulty to write is a symptom. Writing has never come hard to me. This, this isn’t normal. No. It’s a symptom, and I want to have this chronicled, if not for myself then for all those others out there who know what I’m talking about.
I feel as if there is literally a blockage in my brain. The frontal lobe has separated, and I can’t connect the pieces. I feel as if most days all I get accomplished is simply running around after myself picking up the small bits I keep dropping, only that I won’t notice until tomorrow that I really didn’t pick up any more than I missed.
Two steps forward, one back. Two thoughts forgotten, one remembered.
I feel disconnected. My body is telling me things and I’ve lost the decoder key. That’s never good.
I see my LLMD this week. I’m still not sure what I’m going to tell her. Maybe writing this will help me pick out the bullet points, I don’t know. A month ago I didn’t know what to tell her either – other than exactly what she had been waiting for me to say. I told her that I was placing myself in her hands, and she could do with me what she willed.
Of course, I’ve been doing that for over a year. But this is different. I told my doctor that the time has come for me to hand myself over to her. I have no school, no job, limited plans, and an entire year to concentrate on healing myself. I told her that she could throw at me whatever treatment she felt would be best for me and not worry about how the treatment would affect my life. This is what this year is for, I told her.
You should have seen her face.
She knew this was coming, and was she ever prepared. I’m now on a trio of antibiotics which are supposed to be working in unison, as well as an herbal tincture. I won’t get into the specifics of medication names – maybe I will at a later date – but I’m absolutely sure that I’ve gotten myself into exactly what I knew I would.
I’ve opened a door, and walked through it. I’ve committed. This is Lyme Disease treatment, baby; and I’m grateful for it!
At first I was shocked. I didn’t feel a horrible herx. Every day I took my dose in the morning, afternoon, and at night and just waited. I waited to feel something. And I did. Soon, I felt –gasp– better!
Each day flew by. I was making jewelry, rolling paper beads and listing items on Etsy. I was talking to friends. I was doing things!
One morning I felt different, and not in a good way. I spent that day on the couch. I gave myself time. And the next day I was up, feeling great again! I couldn’t understand it – but I wasn’t questioning it. About another week went by before I spent another day completely on the couch. Then, slowly, I began to notice more symptoms each day. Little things piled up.
Cold sweats, heart palpitations, constant, nagging headaches, and brain fog crept up on me until before I knew it they felt normal again.
I’m so, so grateful for those blissful few weeks! They gave me time to feel my feet grow steady under me. I enjoyed them! I was tired, of course, but I was never actually sure whether I was tired from being sick or tired from doing too much because I felt so good. Those are the days I would choose to live over again. When I look back on this month, they are the ones that I remember. I don’t recall what caused me to spend a day on the couch 3 weeks ago. But I do remember getting to listen to live Irish music downtown with one of my oldest friends. I do remember all the jewelry I made, and the family who lovingly supported me whilst doing it. I remember the days that I could cook, rather than the times I was too sick to eat, even though I know both of those things happened. They must have.
Some of these things I’ll blame on the whole horrible-memory-due-to-neurological-Lyme-disease thing, but I want most of the credit for this to go to the fact that there were just so many more good days than there were bad, and that’s something that I haven’t gotten to say in a really, really long time!
I might be hitting a herx now, but I had some great days before it hit. I think we’re on the right track. And I think now I have a better idea of what I’ll be sharing with my doctor this week.
As far as my blogging goes – look for me. I’m intent on sharing my healing journey with you all, and that involves the ups, and the downs. And I’m telling myself that my writing won’t improve at all by ignoring it. I need to polish the tarnish away, sweep away the cobwebs, and join the land of the bloggers again.
In peace & healing,
molly
“Happiness is nothing more than good health and a bad memory.” – Albert Schweitzer
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