Tag Archives: chronic lyme disease

The deep, dark Lyme place (possible trigger warning)

* disclaimer: I am not suicidal, in any way shape or form. Please do not take this the wrong way and freak out.

There has been a story circulating the past few days on the internet about a girl named Heather with chronic Lyme disease who committed suicide because she was so sick she couldn’t go on and had no one to help her.

This is what she posted to Facebook as a last desperate plea for help.

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And here is a link to the YouTube video she posted a few months ago begging for help:

http://youtu.be/47aap_9DTT0

Let me just state the obvious and say, this is terrible.

But I get it.

This is a horribly isolating disease. You are very very sick, but doctors tell you you’re crazy and that there’s nothing wrong with you. If you have family they think you’re faking or they’re just sick of dealing with your problems; if you have any friends left who haven’t disappeared since you’ve been sick they probably have no concept of what you are going through and have no idea how to relate to you. If you’re lucky enough to still be able to work it takes every ounce of strength you have, leaving none left for anything else; and if you have any energy to do fun things you probably have no money to pay for them since you’re paying hundreds of dollars a month on treatment to try to get better (assuming you can afford to pay for treatment at all).

On top of Lyme being so isolating, it messes with your head. It makes you depressed, moody, angry, anxious, and a whole list of other emotions…usually all at the same time. I call this the deep, dark, Lyme place…I’ve been spending a fair amount of time there lately.

A lot of people on the internet are saying that this girl wouldn’t have felt the need to take her life if Lyme was a recognized disease, with insurance companies covering treatment costs. While this may have helped the situation, I feel like there is so much more to it than that. This disease fucks people up, and that’s the sad truth. 

This girl isn’t the first Lyme sufferer to decide to end it all, and she won’t be the last.

I get it.

My pain has been absolutely excruciating lately. I have no words to describe it. It is brain numbing, soul darkening, make you want to curl up in a ball and just die, pain. My pain medications aren’t strong enough, so they just make me feel sick and sleepy, and still in pain. It hurts to move, it hurts to breathe, it hurts just to think.

I don’t know how I can keep doing this. I can’t keep waking up, putting on my mask, and pretending everything is ok. Because it’s not, I’m not ok.

Now, I am one of the lucky ones…I have a wonderful family who believes that I am sick and pays for my treatment, I have a few really awesome friends who are there for me when I need them, and I have a place to live and a job. That is more than a lot of Lyme sufferers can say, and I am very thankful.

However, no one understands this pain. Apparently this is not one of the most common Lyme symptoms (joint pain is popular, but not this deep “every cell in my body is screaming in agony” type of pain), so even my wonderful friends who are also battling Lyme do not know how to relate to me because they have never felt this.

I am in a couple of online support groups, and have met wonderful friends that way, so I started to post on one telling them how badly I’m hurting and asking for pain relief suggestions…and then I realized that unless you have felt this pain you won’t really have any helpful suggestions, and besides I’ve tried everything anyway. Epsom salt baths, massage, acupuncture, physical therapy, reiki, heating pads, TENS units, creams, stretching, yoga, meditation, tea, coffee enemas, deep breathing, muscle relaxers, anti inflammatories, pain killers (of varying strengths)…you name it I’ve probably tried it, and nothing gives much relief. If it helps at all, it’s only to dull the pain and it is always short lived.

So I get what lead Heather to her point of desperation; and while I am one of the lucky ones now, if that were to end for whatever reason, I could quickly end up right where Heather was…and maybe become just another casualty at the hands of the deep, dark, Lyme place. 

Don’t ever judge someone who has made this choice; I’ve heard people speak badly of suicide victims claiming they could have reached out or they must have had someone somewhere who could help, and “that’s what suicide hotlines are for”…please, don’t be those people. Never take for granted the fact that all of us are really just a a bad circumstance or two away from being in their shoes, especially those of us battling Lyme.  

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Things I love, and hate, hearing

“I don’t know how you do it”

I keep hearing this statement lately, and while I really do appreciate it, it tends to stir up frustrations. It feels so good to have other people recognize how hard things are for me and how much I do in spite of that. The problem is that I have no idea how I do it most days either, and when I’m really struggling like I have been lately it just kind of sucks to be reminded of that fact.

“Why don’t you go on disability?”

This is nice to hear because I feel like it is acknowledging the fact that I am very sick and struggling to keep up with life; but it sucks to hear too because it’s just not that easy. First of all, most people have no idea how difficult it is to get disability because they’ve never had to worry about it. Second, something about applying for disability feels like giving in to me, and I don’t give in. Also, I am not the type of person to just stop, I don’t know how to just not do things. No matter how sick I’ve been I’ve always made it to work, paid my bills, taken care of what I needed to (even if it was only the bare essentials), and no matter how badly I want to stop doing all of that…I don’t know how.

“But you’re so young!”

Again, this feels like you’re acknowledging that things suck for me…but really, I’m not too young, no one is ever too young. Five year olds get cancer, 19 year olds have massive heart attacks, newborns are born with heart defects; bad things can happen to anyone at any time, and they don’t ever stop to ask your age before they happen. Life just sucks like that. If you’re lucky enough to have never experienced a situation that you’re “too young” for, then count your blessings. So please, don’t say this to me…every time someone does I have no idea how to respond, “uhm, thanks?” Being young doesn’t change the fact that it DID happen to me, that it IS happening to me every single day, and when I hear this all I can think about is how there are so many people younger and sicker than I am.

“You need to live your life”
“Stop focusing on being sick all the time”
“Why don’t you ever just do what other people your age do?”

I heard all of these recently from someone very dear to me, who I know meant really well, but I still got mad. These are nice to hear because (most of the time) I know there are really good intentions behind them; these usually come from older family members or friends who are concerned that I am missing out on life and experiences I will regret not having some day. The problem is that I am living my life, as best I can anyways. I DO see my friends, when I feel up to it; i DONT focus on being sick all the time, just as much time as it takes to take care of myself and hopefully get better; and I AM living my life, this is it.
You don’t think that given the choice I wouldn’t rather be out having fun, having a career, having hobbies, being “normal”?! I am painfully aware of all the things I cannot do, please do not remind me of them.

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Validation

So I’m going to try to write, but I warn you it may not be the most coherent thing ever. My brain has been slightly better the last couple of days, but still pretty dumb. :/

I’ve been thinking lately, what a very strange feeling it is to finally be recognized as being as sick as I feel. For years I have sworn that I feel like I’m dying, but every blood test/scan/etc comes back normal, or at least “just a little off”. Not lately!

The last month has just been a deluge of abnormal tests, new diagnosis’, and things to deal with.

First, the diagnosis of a heart conditions and scheduling a pacemaker implantation (coming up in 2 weeks!! Ahh!)

Then, results of my thyroid/iron panel labs; despite being on high doses of thyroid hormone my levels are still low! What to do about that, I have no idea at the moment. My doctor says raise my dose age (again!) but I’m not so sure about that…

My iron panel is so freaking confusing…
Ferritin (storage iron)- VERY low (but my Dr says it’s ok?)
Total Iron- normal
Binding Capacity- low
% Saturation- high
So do I take an iron supplement or not?! Ughh.

Then, because I am not responding much to antibiotics (not much herxing, and not feeling better either…actually I am worse than when I started treatment) my doctor wants to give me a picc line. (This is essentially an IV, that is surgically implanted, and you use to receive IV meds in your home). This is very aggressive treatment, and tends to make people herx very badly. I agree that I need it, but I have a life! I have to work! I can’t get that sick! So we agreed to postpone this discussion until my next appointment.

At my doctors appointment she drew some blood, for a couple of different things:
1) to send to Igenex for another western blot test (the best testing option available at the moment)- still waiting for results 🙂
2) to send to a researcher at a local university who has developed his own method of testing that is said to be very accurate and reliable- he found “multiple positives for Lyme” in my blood. I definitely have Lyme disease!
3) to run a C4A test (this tests inflammation caused by Lyme or toxic mold exposure)- *3 1/2 months ago my results were 2437 with a normal range of 0-2830* Now? 21,311!!!. To quote my doctor this result is “astronomical” and “the highest she has ever seen”.

Finally, an explanation for why I have been saying for months that something is really, very wrong…and for why I have been steadily feeling worse since starting treatment.

It’s weird, really weird. For instance, this morning I saw my cardiologist, and I mentioned to the medical assistant that I was feeling pretty crappy today so she did an EKG. When the doctor walked in the room, she took one look at the EKG results and said “well no wonder you feel like crap!!” I thought I was dreaming! A friend heard my C4A number and texted me last night saying “I think you might technically be the sickest person I know…no wonder you are having such problems”. I am now *that* person that my doctor uses as anecdotal evidence for her other patients…you know, when they say “I have a patient who…”…that’s ME. (I know this because a friend of mine saw my doctor yesterday and told me that she was telling him a story of one of her patients who had a C4A level over 20,000…he said “I wonder who that could be?”)

So weird. So so weird. But really nice too.

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Anti- everything!

It’s been a rough few days (surprise surprise right?). About 10 days ago I started a new pile of different antibiotics that includes some antimalarials too (used to treat coinfections that come along with Lyme disease and can also make antibiotics more effective), so when I woke up at 4am on Sunday morning in horrendous pain I rejoiced! I said “finally! A herx! I’m so excited!”…I know, this sounds totally crazy but with Lyme disease you hope for stuff like that because it means that the treatment is working, just trust me.

I did what I am supposed to do; I called out of work, spent the day in bed, slept a TON, drank a ton of water, and did as much detoxing as I could manage…which wasn’t much since I was so weak that a trip to the bathroom meant another 2 hour nap, but hey, I did my best. I was in massive amounts of pain in my muscles, neck and lower back; I had a migraine that was blinding if I tried to sit up; I had a sore throat and a low grade fever and no appetite. By Sunday night it had eased up and I figured “cool, it’s passed”…until I woke up Monday morning. I woke up feeling fatigued but pretty much like my usual self, except for a rash all over my hands. It was like little bumps, which I had had before but never more than like 3 at a time and I counted 27 first thing Monday morning. By the time I got off work Monday evening it had spread to cover the palms of both of my hands, all my fingers, and the soles of both of my feet, and I still had a sore throat and sore tongue (with red dots on both of them too).

It was excruciatingly painful…like being covered in blisters and fire ant bites at the same time (for those of you who don’t know what fire ants are, they are little demon ants are everywhere where I live that bite you and leave poison behind that burns and hurts terribly).

I said “if this isn’t gone by tomorrow I’m calling the doctor immediately”, and went to bed to research the crap out of it (naturally, what else would I do?). I determined that it appeared to be a viral infection and when it wasn’t better I got in to see the new nurse practitioner at my primary care doctors office.

That poor woman, it was like her first week on the job and here I am, a super complicated case to begin with, and now covered in some mysterious and very painful rash that she had no idea what it was. It was like bumps, and blisters, and red dots, all at the same time. See?

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After all the doctors in the practice had a big meeting about me, it was decided that I should start an antiviral medication and do lots of labs to check things like white blood cell count and inflammation levels.

The theory is that this is a reactivation of a virus that has probably been laying dormant in me since I was a kid…like how adults get singles from the same virus that causes chickenpox in kids, only it’s much worse in adults.

Wonderful, I really can’t catch a break. 😦

The fun part is, now I am on:
Antibiotics
Antivirals
Antimalarials
And antifungals!

I’m just anti- everything!

I guess that’s a good thing? I hope I’m covered now!

I can’t say for sure if the antiviral med has helped or not; I’ve taken 2 doses so far (it’s for twice a day for 7-10 days) and I’m slightly less miserable at the moment…but I also took a crap ton of ibuprofen this morning. :/

The sad part is…it wasn’t a herx :(. Just when I thought we had found an antibiotics protocol that would produce results…nope! Just kidding! It’s just one more thing to dump on the shit pile. Great, what’s next?

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Akhilandeshvari- no my cat did not just walk across my keyboard

So I’ve had kind of a negative attitude lately (ok, a really negative attitude)…especially this week since it’s been kind of a rough one; well today I read this post on Elephant Journal, and I decided that I am going to try to change that.

 

Akhilandeshvari:

“Ishvari” in Sanskrit means “goddess” or “female power,” and the “Akhilanda” means essentially “never not broken.” In other words, The Always Broken Goddess. Sanskrit is a tricky and amazing language, and I love that the double negative here means that she is broken right down to her name.

But this isn’t the kind of broken that indicates weakness and terror.

It’s the kind of broken that tears apart all the stuff that gets us stuck in toxic routines, repeating the same relationships and habits over and over, rather than diving into the scary process of trying something new and unfathomable.

Akhilanda derives her power from being broken: in flux, pulling herself apart, living in different, constant selves at the same time, from never becoming a whole that has limitations.

 

This goddess has another interesting attribute, which is, of course, her ride: a crocodile.

Crocodiles are interesting in two ways: Firstly, Stoneberg explains that the crocodile represents our reptilian brain, which is where we feel fear. Secondly, the predatory power of a crocodile is not located in their huge jaws, but rather that they pluck their prey from the banks of the river, take it into the water, and spin it until it is disoriented. They whirl that prey like a dervish seeking God, they use the power of spin rather than brute force to feed themselves.

By riding on this spinning, predatory, fearsome creature, Akhilanda refuses to reject her fear, nor does she let it control her. She rides on it. She gets on this animal that lives inside the river, inside the flow. She takes her fear down to the river and uses its power to navigate the waves, and spins in the never not broken water. Akhilanda shows us that this is beautiful.

 

 

I love this so much. Somehow it was exactly what I needed to read today.

Between my divorce and recent health discoveries and frustrations I feel so broken. I feel like over the past year that crocodile has dragged me into the river and spun me around over and over and over until I don’t know who I am or where I’m going anymore. I am so afraid; of where my life will go from here, if I will ever get well or rather just continue to get worse and worse until something kills me, if I will be alone forever, if I am too sick and stupid to accomplish anything with my life. Those are just the ones I can vocalize, I feel like there are so many more fears hiding under the surface that I don’t even understand enough to be able to describe them.

So today I have decided to be a goddess; I will get on my crocodile and ride my fears right to something beautiful. I will be never not broken, and it will be amazing.

Akhilanda is also sometimes described in our lineage like a spinning, multi-faceted prism. Imagine the Hope Diamond twirling in a bright, clear light. The light pouring through the beveled cuts of the diamond would create a whirling rainbow of color. The diamond is whole and complete and BECAUSE it’s fractured, it creates more diverse beauty. Its form is a spectrum of whirling color.

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With brokenness comes great potential not only for change, but for refining and smoothing and shaping.

 

So now is the time, this time of confusion and brokenness and fear and sadness, to get up on that fear, ride it down to the river, dip into the waves, and let yourself break. Become a prism.

All the places where you’ve shattered can now reflect light and colour where there was none. Now is the time to become something new, to choose a new whole.

 

Read the full article here: http://www.elephantjournal.com/2011/06/why-being-broken-in-a-pile-on-your-bedroom-floor-is-a-good-idea-julie-jc-peters/

Pictures from the article, and google, respectively.

 

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Salt, socks, and heart beats

I know I promised a post about the new treatment I tried…be patient, I have another appointment this weekend and maybe I will write after that. One session just isn’t a very good gauge of how it helps.

For now, however, I have big news…I have (another) new diagnosis. Ready for this one? 

Brady Tachy Syndrome. 

Weird name, I know. 

Anyway, it means that the electrical system that tells my heart when to beat is fried, and therefore my heart is just doing all kinds of weird things. It speeds up, it sloooooows way down, it skips beats, and the top half likes to be impatient and beat before the bottom half is ready. 

I told you it was weird. 

 

So I got a crash course in how to read an EKG from the doctor today, so I’ll pass on to you the bits of info that stuck…just because I think seeing the EKGs really makes it evident what I am talking about. 

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Where that arrow is is where my heart SHOULD have had a beat, but didn’t. 

 

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See up at the top left there? It says “bradycardia: 40 BPM, duration 12.4 seconds”…that means that my heart was only beating 40 beats per minute, that’s badI was sleeping, so it should be lower than normal, but not THAT low. Much lower than 40 and you’re talking about not waking up in the morning! 

Now check out this one!…

 

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That says that my heart rate got up to 156 at one point! And look at the difference between these lines and the last ones! (Now, it is NORMAL that the lines go up and down like hills, the doctor said that is because something pulled on the EKG lead stuck to me…but how squiggly and irregular those lines are is NOT normal!) Not to mention 156 BPM is not normal either! 

 

 

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THAT arrow shows a “ventricular ectopy”…which is defined as Ectopic heartbeats are small changes in an otherwise normal heartbeat that lead to extra or skipped heartbeats…

  • Premature ventricular contractions (PVC)
  • Premature atrial contractions (PAC)”

That’s what I meant when I said that the top part of my heart likes to get impatient and beat before the bottom half is ready.

 

So what all of that means is that 

a) I am developing A-fib (atrial fibrillation- a type of arrhythmia that leads to the heart “quivering” as opposed to beating”). This does not surprise me, since my dad has been diagnosed with a-fib.

b) It most likely explains some of my fatigue because it is very stressful to the body to have the heart doing all of these crazy things.

c) It is very possible that this is keeping me from getting restful sleep, because my heart rate drops so low while I’m sleeping, and then the body over compensates and raises it again…preventing me from staying in REM sleep (when you really get rested).

d) I need a beta blocker (blood pressure medication) to lower my heart rate, but I can’t take one because then my heart rate will go TOO low! Like it could go SO low that it would stop in my sleep! (During this test there were a couple of times where my heart did stop beating, once for 3.4 seconds and once for 4.5 seconds…and I wasn’t on any blood pressure medication!).

So what IS there to do about it?

A pacemaker. Yep, at age 25. 

 

That freaked me out at first, like a lot, but I’m coming to terms with it. The doctor said I do not have to rush, I can chose to have the surgery now or try to wait a few months…but when it comes down to it I will inevitably need it done.

The fact is that I believe that my body will not be able to heal from the Lyme and everything else I have going on while it is working overtime to deal with my heart acting up. Plus, I feel like crap, and this has the potential to really help me feel better. The doctor also said that this will inevitably get worse, and there could be seriously negative outcomes when that happens. 

My LLMD feels that it will get better once I treat the lyme disease, but I disagree, as so does my cardiologist. The cardiologist insists that I would have developed these issues regardless of whether or not I had lyme disease, that just may have sped up the process (since I am a little young to have this condition). So the question is then, do I wait and see if it gets better with lyme treatment, feeling shitty the entire time? Or do I go ahead and have the surgery, to hopefully give my body (and myself) a break from all this nonsense so I can get better?

I did find as I was researching a little that it is possible to have the pacemaker removed later on if I no longer need it…so that makes me feel a lot better about the whole thing. 

Still, it’s such a dilemma. 

I will say this…right now I am definitely leaning towards surgery sooner rather than later. 

 

The other info that came out of this appointment is that the large, essential veins in my legs are “stretched out”…meaning that my blood likes to go down to my feet and not be able to come back up. This makes my legs hurt and feel heavy, my feet turn all shades of blue/purple, and is probably the reason I passed out during my tilt table test. So because of this, I am now doomed to the infamous compression stockings every day for eternity…since there is nothing that can be done to repair the veins or relieve this problem. Yet another thing that makes me feel like shit, and will continue to get worse and worse as my life goes on with no hope of relief. My sole hope lies in some really tight pantyhose and being able to consume as much salt and water as is humanly possible.

I’m doomed

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Real talk.

It’s really nice to have this blog to pour my thoughts into, especially the thoughts I don’t want to say out loud or bother other people with.

Like this one tonight….

Ready? It’s time for some serious real talk now…

I’m jealous. I’m angry. I’m sad. Mostly I’m just jealous.

I have quite a few friends with lyme disease, some I knew before I was diagnosed and some I met in support groups after. It’s lovely to have people who really understand what I am going through, and have been doing their own research, to talk to and share ideas with.

However, it sucks to watch them get better. Not for them, obviously, I’m overjoyed for them…but for me it sucks.

I have a very close friend; my age range, diagnosed just a few weeks before me, sick for quite a while (but maybe not as sick, or for as long as I have been)…who after pretty close to the same amount of time treating is in the gym working out, going out and partying, feeling better. We see the same doctor, therefore have pretty similar treatment protocols…but he’s better and I’m most definitely NOT. 

I’m so extremely happy for him. But damn…

I know, I know…”everyone is different, you can’t compare…blah blah blah”. I don’t care. I care, just not tonight. 

I’m sick. It royally fucking sucks. I’m not sure if I’m ever going to get better. So yeah, I’m jealous.

 

I’ve been doing a lot of thinking lately about what I want to do with my life, who I want to be; and while I am excited about where I think my instinct is leading me, I find myself insanely jealous of people who can just make these decisions without having to worry if their brain will be too foggy to pass classes/exams, or their body will be too weak to withstand that internship, or whether they will end up too disabled to be able to actually have a career at all.

That makes me angry.

 

Alright, I’m done. It may be safe to say that the antibiotics induced mood swings are back :[

Check back tomorrow or the next day for a post on a new treatment I am trying tomorrow! :]

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Hooray for wigs and new beginnings!

I did it.

I said I wouldn’t, but I did.

I got a hair cut.

I know, I know, big deal, right? It’s just a hair cut.

Except it’s not just a hair cut…for a handful of reasons.

First, I have can count the number of hair cuts I have gotten in the last 5 years on one hand and have fingers to spare.

Second, my head is significantly lighter now…10 inches lighter, to be exact.

Third, those 10 inches will now be made into a wig for a child fighting cancer. ❤ This is a big deal for me as my aunt is a breast cancer survivor and I remember her struggle to find a wig that made her feel comfortable.

Fourth, it means something.

 

About a week before my ex-husband and I started dating I chopped off all of my hair. I don’t know why, just felt like it I guess. Well, he was upset…he told me I shouldn’t do that again because he liked my hair long. So I didn’t. Don’t get me wrong, I know that makes him sound controlling and he really wasn’t; I actually liked my hair long anyway, and I wanted him to like how I looked (what girlfriend/wife doesn’t?). So I haven’t had a real hair cut since then.

So the other day when the urge to chop it off struck me (it does that periodically), I just got a hair cut. Simple as that. For once I just made a decision without stopping to think what he, or anyone else would think about it.

It’s really quite freeing to just make decisions, without worrying about how it will affect someone else or what anyone will think (wow, getting a little deep here…it’s just a hair cut…or is there more on my mind tonight than just hair?)

Hair cuts have always felt like new beginnings to me; a new style, a new way of doing it every day, maybe even a new color! (Still contemplating that one…)

I feel like I just cut off the last 5 years of relationship…and the new grows now will be me, and only me.

 

Plus there are definite perks to this short hair thing:

1. Uhm, it’s suffocatingly HOT outside…enough said

2. I actually feel like I can safely manage to wash it all by myself, even on bad days (thank goodness for shower chairs too!). That used to be one of the things that I had to have help with when I was very sick.

3. I can actually hold my arms up long enough to style it, most days. Feeling like I am pretty is soooo important for my mental, and therefore physical, health.

4. A lot of it was falling out anyway…and it’s much less annoying to lose hair when it’s short.

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By loving I am staying alive…

“Here I am, rumbling along in my pigpen of emotions, lost on my sofa for eons now, feeling inadequate in so many vital ways. I’ve lost a sense of myself. It’s unnerving to feel adrift and unmoored from the natural grounding forces of my work, marriage and society. Many hours waffle by where I am reeling in confusion… Loving is about all I have left that I can do. Or so it seems. Patiently, I listen to all that goes on in their days. I listen to what is in their hearts and on their minds. This I can do readily and in peace… By loving I am staying alive… If I can’t trust that I’ll get well, if I can’t trust that I’m a valid person by the mere fact of just being me, at least I can trust that I’m still good at loving.” -Out of the Woods, by Katina Makris Pg. 131

I have been reading this book for a month now, and I’m only halfway through. Partly due to how foggy and full of cotton my brain has been lately, I find it almost impossible to read most days and end up just setting the book down and staring at the wall instead; but also partly because it has been a very tough book for me to read.

The book chronicles the authors battle with chronic Lyme disease, and is so well written that it is physically painful for me to read at times. I’ve been there. I’ve felt that. I remember how much that hurts. I feel that way right now. I am all too familiar with that dark, fearful despair. I know that hopelessness.

I feel as though I am feeling every pain and emotion through the pages of the book. Don’t get me wrong, it’s a wonderful book, and I think anyone who knows someone with Lyme disease should read it, as the author does such an amazing job of painting the picture of just how isolating and hopeless and scary this disease is. But be forewarned, if you are ill yourself, it’s tough.

For some reason this passage got to me, in both a happy and a sad way. It says exactly how I feel, only much more eloquently than I could ever say it.

I don’t know who or what I am. I don’t know what I’m doing with my life. I don’t know if I’ll ever get well. I don’t know if I even exist outside of this disease. But I do know that I am good at loving .

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Dear antibiotics; I think we need a break…

It has been 10 weeks now since I was diagnosed with lyme disease and began treatment, so here’s an update.

At the beginning I herxed a little from the antibiotics, very normal albeit unpleasant. It passed quickly each time and wasn’t anything I couldn’t cope with. Then things started falling apart, I started falling apart.

I had bipolar mood swings despite being well “stabilized” on my meds , the worst acne I’ve ever had in my life, the worst insomnia I’ve ever had, pain, blood pooling, heart palpitations, pre-syncope (almost passing out), and major major fatigue, SO much fatigue and weakness that there were many days where I could barely walk! None of these were new symptoms for me, just much much worse than usual or rearing their ugly heads when I hadn’t had to deal with them in a long time.

I’ll admit, I freaked a little. I knew it would be hard, I knew what I was getting into, but this was not it!

So I talked to friends who have been doing this a lot longer than I have, and ran in to my doctor at a fundraiser and mentioned it to her (and showed her, since that day I couldn’t walk more than a few steps at a time!), and every one agreed that I should take a break from my antibiotics. I really didn’t want to, so I debated for a few weeks, until I finally made up my mind to try it.

What convinced me was that I kept saying “if I knew this was herxing I could cope with it a lot better, but I don’t think it is” and a friend finally said “just take a break from the antibiotics, if things get better then you know it’s herxing!”.

So after 11 days off, I think my verdict is this:

Mood swings = herxing

Blood pooling, pre-syncope, palpitations = yet to be determined condition (undergoing a million different tests over the next couple of weeks, so we shall see)

Insomnia = lyme symptom but doesn’t seem to be related to antibiotics. However it does seem to be retreating with help from some supplements my doctor suggested :]

Pain, fatigue, weakness and walking problems = typical ME crap, perhaps maybe made a little worse by herxing. I haven’t had any trouble walking since being off of antibiotics, but it comes and goes, so that’s inconclusive. :/

Over the days off of antibiotics, my pain was off the charts…I find that an interesting tidbit of info, that I’m not really sure what it means yet, but after 2 days back ON antibiotics it is not any better. :[

Interesting as all of that is, I still don’t really have an answer; and now I’m scared starting antibiotics again that it’s only a matter of time before I’m getting worse again.

I have learned over the many years that I have been sick, and especially recently, to trust my instincts. I know my body, better than anyone else, and when my instincts talk I listen. Right now, my instincts are screaming that something isn’t right…I just have to figure out what it is.

There is a missing puzzle piece, or maybe several, and until I figure it out I think I am going to continue to have problems.

I am so tired of worrying about this.

 

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