Monthly Archives: July 2014

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.

20140730-143500-52500113.jpg

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.  

12 Comments

Filed under Chronic Illness, Uncategorized

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.

Leave a comment

Filed under Chronic Illness, Uncategorized

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.

3 Comments

Filed under Chronic Illness

I want to write

I want to write. I’ve been trying to days but I just can’t. I have ideas galore bouncing around inside my head, but as soon as I sit down to write them I just can’t. 

I hate my brain lately. I don’t think my brain fog has ever been like this. I can’t even focus enough to hold on to a thought in my head. I feel like my brain is on drugs, or has attention deficit disorder or something. Just when I think I’m actually thinking and functioning ok, a little while later I catch myself staring at the wall for who knows how long, and realize I’m just kidding myself. (I’ve stopped to stare at the wall a total of 4 times in writing this post so far). 

So for now, I will try to calm my mind and be content to stare…and you all will just have to wait for my brain to settle down long enough to let me write a real post. (Hopefully soon, I have a theory as to what caused this so I’ve changed my supplements to try to fix it…let hope I’m right!)

8 Comments

Filed under Chronic Illness, Uncategorized

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?

20140709-164326-60206003.jpg

20140709-164326-60206326.jpg

20140709-164326-60206616.jpg

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?

12 Comments

Filed under Chronic Illness

Awesome Awesome awesome article.

I often am told how amazing it is that I deal with so much at such a young age, how hard it must be and don’t I wish I had a normal life like everyone else my age. Short answer: yes, sometimes…long answer: read THIS

 
If I’ve learned anything through this journey, it’s that while we may not get to change the facts of our story, we get to dictate the way that it’s told. We get to decide the role we’re going to play in it, how we’re going to interface with each chapter, and whether or not we’re going to be the victim or the heroine of the saga.

So give me a cape and call me a superhero, because I’m not the victim of this story.

 

Through the experience of regaining my health, I’m learning that we’re all served our set of monumental challenges. My life may (unfortunately) look wildly different from the lives of my peers, but each has its own set of challenges.

 

They may not involve ambulance rides, surgeries or medical anomalies, but I think we’re all given a set of obstacles that shape us into who we’re meant to be, and guide us toward where we’re meant to go. Whether it’s the loss of a loved one, destitution, or a broken heart—sometimes we need that detour that launches us onto a path we wouldn’t have otherwise found, and a guide to teach us how to walk down it.

Some of my favorites of the lessons listed:

9. It is indeed humanly possible to consume more than six servings of vegetables without it completely ruining your day. A vegetable rule of thumb—if you hate it, then roast it.

 

10. Sign up for Amazon Prime. When there’s only two pills left of your favorite supplement and you’ve forgotten to order more, 2-day shipping will be free (also good for chocolate flavored almond butter emergencies).

 

16. You are not The Hulk. Don’t start at full dose. Invest in a pill cutter, and for a while, decide whether or not it’s going to be a “little half” day or a “big half” day. Feel like a rock star when you pick the bigger half.

 

17. That inexplicable funny feeling that you sometimes get about things? It’s your intuition. Trust it. It’s smarter than your heart and less biased than your brain.

 

20. Study ingredient labels like it’s your college major. And if you can’t pronounce it, don’t eat it.

 

25. Make peace with your sweatpants. The world is lucky you got dressed.

 

29. Your body loves your gluten-free diet. Just give it some time to prove it to you.

 

32. Try not to underestimate yourself. Your body may be somewhat unreliable, but your spirit isn’t.

 

Some of these are my favorites because they are sooooo true…and some because they are ones I have yet to master!

 

35 Unexpected Lessons I Learned from Late Stage Lyme. ~ Candice Mitchell

 

2 Comments

July 4, 2014 · 5:26 pm

Recent observations about relationships, both mine and others

I have spent the last few months of painful singleness observing the relationships of those around me (I have always loved watching people, but I find myself especially focusing on relationships lately). I have learned several things, some of which make getting divorced at age 25 easier for me, and some make it harder…and some do both.

One of these things is how much my ex husband was totally not the kind of man I want, the kind of man I’ve always wanted…and I don’t know why I thought that was ok. I guess because I loved him.

Last week I was at a Lyme disease support group with one of my closest friends (who also has Lyme) and her husband. As I sat there I watched him rub her back, touch her hand, and sit closer to her; during the discussion several times he chimed in with his experiences with her illness, a joke or two, and even asked a few questions. All I could think about was how my ex husband would never have done any of those things. IF I managed to drag him to the meeting at all (and that’s a big “if”!) he would have sat in the corner, playing games on his phone, without saying a word to anyone. Then he would have begged to leave until I gave in and left early even though I really wanted to stay.

I want that. I want the kind of guy who cares enough about me and my health to go to appointments with me, to go to support groups, to ask questions; the kind of guy who is emotionally present enough to be able to express how he feels about me being sick. I want those sweet little touches, the hand on my back, the hand that always finds mine.

In a way this makes getting divorced easier, because now I have the opportunity to find that kind of guy; and in a way it makes it harder because it forces me to realize exactly how unhappy I was and how much I was missing out on in my marriage.

Another thing I have learned is that there is real beauty in being one’s own person, in having one’s choices affect no one else but you. For this reason getting divorced when I did may turn out to be the best thing that has ever happened to me. I have spent the last 5 years worrying about what HE needed or wanted, how it would affect HIM if I enrolled in such and such grad school or whether HE wanted to move to X city where such and such grad school was located, how we would manage to pay for HIS legal bills rather than my tuition…right down to what HE wanted for dinner and what color bedspread HE would like on the bed. Now, for the first time in my adult life (and really my entire life) I can do what I want, go where I want, eat whatever I want for dinner, and buy whichever damn bedspread I like best, without even stopping to think about what anyone else wants. That’s pretty awesome.

This makes the divorce easier (for obvious reasons), but it also scares me…I don’t want to get too good at being alone.

I want a man who loves kids, period. Today while I was working I was observing this guy (the cousin of the kids I nanny); he is 25, really really cute, and was at the beach with his family and a friend (with coolers full of beer and plenty of adults to talk to)…yet he spent all afternoon playing with a 9 year old little girl because she idolizes him. They played ball, swam in the ocean, chased each other around the beach, for hours. Not once did he complain, or try to ditch her to hang out with his friend…he just played, and honestly enjoyed himself. I want that.

This makes divorce a little easier because I know my ex (I keep having to backspace because I forget the “ex” part :[ ) husband and that is so not him. He doesn’t like kids, he thinks they’re annoying…and only agreed to have them because he knew it was a deal breaker for me.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I had plenty of time to think about these things today; I had to work, and since my bosses are on vacation at the beach, that meant a beach day for me too (rough, I know). The problem was that their entire extended family, as well as a lot of their friends, were at the beach too…this meant I spent the day surrounded by quite a few women my age. This sucks because all of these women are a) absolutely gorgeous (this entire freaking family is gorgeous, men included!) b) they are all sporting nice sized diamonds from their handsome, attentive husbands who all have good jobs and c) they all have babies. Meanwhile, I’m 25, almost divorced, lonely as #$%@, self conscious about my illness ravaged body, desperately anxious to be a mom, and sitting in the corner virtually invisible earning my measly pay check which will barely cover my bills. Suck.

That sounds like a pretty silly thing to be worried about, I know, but it really does upset me. It’s hard to watch other people have exactly what you want while you’re unhappy. It actually makes me kind of angry…why couldn’t my ex husband just be a decent freaking husband? Why couldn’t he be there for me and love me like I needed him to? Why did he let the addiction take over his (and my) life like he did? * I do know the answers to all of these questions, but situations like today make me feel like those answers just aren’t acceptable, like it’s not fair.

Note: The antibiotics induced depression is most definitely back, so…sorry, you’ll just have to deal with my dismal moping for a while. :[

1 Comment

Filed under Divorce, Uncategorized