Tag Archives: chronic lyme disease

It’s been quite a while

Well, it’s been quite a while since I wrote, before the other day it was 4 months to be exact, so I guess I should update you on my health.

4 months ago I was doing REALLY well. I was feeling good, I was in the gym working out several times a week, going out and doing normal people things, just feeling like a normal person. Unfortunately that all came to an end though. I’m back to feeling like I’m dying; I’m sleeping from 4am to 5pm every day, barely eating 1 meal per day, in massive amounts of pain much of the time, barely having the energy to be out of bed for 2 hours per day, experiencing tics/tremors daily, and new symptoms of nausea/a hangover feeling and “ice pick”headaches have appeared out of nowhere. Things are bad around here, really bad.

We have also officially confirmed a new diagnosis, Babesia…lovely.

I think my medications/supplements are multiplying like bunny rabbits when I’m not looking!!

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And I don’t even have all of my new protocol yet! (I had to order some meds from Canada)

Thank goodness I’m on a 2 week break from school in between Summer and Fall semesters, the problem is I have only 4 days left of break and I’m terrified of what’s going to happen when school starts and I can’t sleep until 5pm every day anymore. I’m registered for some pretty tough classes and I’m way too sick for that right now.

I’m just tired and scared.

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Planning to plan

“Life is what happens while you are busy making other plans” — John Lennon

There is unrest in my soul tonight.

So many people spend their whole lives planning their lives. I used to be one of those people; the one with the 5 year plan, the 10 year plan and the 20 year plan…with plans for achieving my plans, I even planned to plan! 

People spend their lives running from one opportunity to the next, expending energy, time and money…they even forgo time with their loved ones in exchange for pursuing the ever out of reach “plan”.

The truth of the matter is I can’t plan anymore. Well, I can but if I’m being honest with myself it’s a waste.

Don’t get me wrong, I have plans and I want so badly for them to come to life…but I can never ever lose respect for the fact that in a minute it could all be gone. All my plans could go up in smoke.

Tomorrow we could not wake up; we could wake up and not be able to walk; we could wake up and not be able to speak or see or hear. Tomorrow we could get hit by a bus, murdered or kidnapped and sold into sex slavery. Ok, I’m being a little dramatic…but it’s true.

Tomorrow you could get bit by a tick and your whole world could change…mine did.

The fact is that none of us can plan, if we’re being honest with ourselves. We can plan, but we damn well better never lose a healthy respect for the fact that it could all be gone in an instant…because that’s when the universe likes to throw us a little reminder. Trust me…

Plans are just that, plans…they’re ideas, possibilities, desires. They are not promises and they are most definitely not guarantees. So make your plans, set your goals, and work hard for them but remember this…tomorrow it could all be gone.

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Dating a sick girl

As I sit here, awake early (for me) on a Saturday morning, eating pastry in his bed and channeling my inner Carrie Bradshaw while he is at work, all I can think about is the parts of that picture I failed to describe for you. Like the IV pole standing next to me, and the pill box full of pills on his beside table; the many bags of IV medicine currently residing in his refrigerator and the conversation we just had before he left about what time we could leave to go somewhere this afternoon because I will have to finish my IV drip before we can leave. How I laid awake and watched him sleep until 4:30am because I had to finish my IV, and the box of saran wrap in my suitcase so that I can take a shower later. While all of these things are MY normal, I am constantly reminded that they are not everyone else’s.

I know a lot of people who can’t/won’t date due to their chronic illness, and I know that I should consider myself very lucky that I not only can but have found someone who is willing to look past it and put up with the insanity that is my life…but I can’t help feeling that it isn’t fair.

I hate worrying him. I hate filling his once normal life with IV bags, doctors appointments and surgeries. I can’t for the life of me figure out why he wants to put up with it all. Hell, Idon’t want to put up with it all and it’s my life, I definitely wouldn’t be doing it voluntarily!

I can’t help but wonder what he’s thinking…how does he feel about waking up to an IV pole in his bedroom? He says he’s fine, that it doesn’t bother him, but is he really fine? What is it really like dating a sick girl?

The other day I had a massive migraine, I mean the worst migraine I’ve ever had. We were out at dinner and then going grocery shopping when it hit me. I could barely move, was ready to throw up, and was desperately popping every pill in my purse to make it stop. I was actually contemplating going to the ER, it hurt THAT badly. The poor guy was so shocked, he didn’t know what to do and just stared at me with big worry-filled eyes. I can’t even begin to imagine what that feels like, watching someone you care about be that sick. I know cognitively what he was feeling; worry, helplessness, frustration, sympathy etc. but I can’t really understand.

I can’t imagine having my life suddenly over taken by IVs and worry…my life has always been this way. I guess I’m scared. Maybe he’ll decide it’s too much. Maybe he’ll meet some prettier, healthier girl who can live a normal life with him sans IV bags and doctors appointments. Perhaps his friends will lecture him about how he “could do so much better” or “shouldn’t have to put up with that”. Maybe he’ll decide I’m just being a baby…like my ex husband did…

For now though, I can’t even wrap my mind around how lucky I am…

I really dislike clichés, and I’m not one to subscribe to the belief that an omnipotent being (whatever you choose to call him/her) gave me this life for some reason I am unaware of, but I will say that I believe things happen sometimes exactly the way they are supposed to happen…

I think he is exactly what I need right now.

He makes me so incredibly happy. He makes me want to be as smart, strong, and incredible as he thinks I am. He makes me believe for half a second that I could actually get better and be a normal person. He makes me want to work harder, be more determined…try harder.

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Optimism vs. Realism

I was having a discussion with a friend today about my health and the prognosis of my many conditions; he asserted that I could and would get better whereas I pointed out that I have been continually getting worse for my entire life and that realistically the prognosis isn’t good.

Sure, I can treat my lyme disease with tons of antibiotics for the next several years, and if I’m lucky I’ll put it into remission, but what kind of permanent damage will be left at that point?

We all know that my heart will never be the same after 2 surgeries and many, many episodes of SVT/Vtach which causes damage to the heart muscle.

I have developed arthritis in several of my joints, including my hip and hands. I also basically have the spine of an old person, with a type of arthritis that generally only occurs in the elderly. This is a degenerative arthritis, as well as I also have degenerative disk disease. “Degenerating” in and of itself implies that it will get worse over time, right?

So my friend’s argument was that if I tell myself that I won’t get better, then it will become a self-fulfilling prophecy and I never will…such an optimist, he is. 🙂 My point is that if I go through life expecting to get better, when it doesn’t happen that will be too difficult to bear…not to mention the point that all the facts point to me continuing to get worse, not better.

Call me a pessimist, but it’s just how I feel.

I understand my friend’s point, I really truly do, but it’s one of those things that is much easier for him to say since he is not in the same situation. On one hand I wish that he could spend a little time in my body to experience what I feel every day, maybe then he wouldn’t be so quick to chastise me…but on the other hand I would never wish this on anyone, especially not someone I care about.

I’ve said this before, but I’ll say it again, living with this amount of pain every single day changes a person…it makes you sadder, angrier and pretty much dead inside. It takes away pieces of you until you don’t know who you are anymore. It makes you not want to go on living. (Disclaimer: I AM NOT SUICIDAL. Please don’t freak out)

Does that mean that I take such a pessimistic view of my prognosis because I don’t WANT to go on living like this? Maybe (I mean, really, who WOULD?). Does it mean that want that to become a self-fulfilling prophecy? No, definitely not.

I WANT to get better. I do.

I can’t tell you how badly I want to live a normal life. I want to go to medical school and be an incredible doctor who heals people. I want to exercise, to train in Tae Kwon Do again, to go running and lift weights. I want to have children, without worrying about what sorts of horrible diseases I will pass on to them; then I want to be an awesome, fun mom, with energy to make great memories with her kids. I want to wake up every morning and NOT be in pain. I want to go to the store without needing a handicapped parking spot, headphones, or a wheelchair; then I want to walk out of the store without wanting to collapse or cry. I want to go out, dance and drink and have fun like most people my age do. I want to go to the doctor and have her find nothing wrong with me. I want to date, without worrying if the prospect of being with a sick girl will make him run for the hills.

I want to be healthy.

All of these things most people take for granted, probably including my friend, yet most of them are things that I will never be lucky enough to have.

Even if I were to put my lyme disease into remission, I would always have to worry about passing it to my children, I would always have to warn potential husbands about the possibility of it coming back, and always be afraid of overdoing it with exercise or catching a cold and causing it to come back. Then of course, there is always the relatively large risk of it coming back, and I sending me right back to where I am now. Not to mention whatever lasting, irreversible damage has been done.

I will always have to live in pain, that’s just the cold reality of my life. Even with lyme in remission the damage to my back will never be repaired; even if it never got any worse, it would still prevent me from doing many things I want to do and cause me pain for the rest of my life. I cannot go through life making plans and having dreams that will be unattainable as long as I have pain, because I will ALWAYS have pain. Sure, I could strengthen my muscles to minimize further damage or unhealthy movement of my spine that causes pain, I could get pain relieving injections and possibly even have surgery to compensate for some of the damage, but I will still always have pain. I will never be NORMAL.

I know, I’m being really depressing tonight, but this is the reality of my life. While my friend is overly optimistic, I am a realist. I would rather look at the reality of the facts, and prepare myself for the worst, than get my hopes up for something that is unlikely to occur. As for that becoming a self-fulfilling prophecy, he has a point, it might. All I can do about that is continue to strive for the best outcome I can get, I just refuse to expect for that outcome to be unrealistic.

My friend said he didn’t believe me that I feel this way because I continue to try to get better by taking massive amounts of antibiotics, going to doctors appointments and having surgeries. I won’t lie, it does make me wonder why I’m trying. Why do I bother? Why put myself through all of these treatments which are expensive, painful and time consuming if my best hope is a temporary remission and a painful life, and even that is far off and possibly unlikely? What’s the point?

You wanna know the truth? I have no idea. I told my friend that I try because I’d rather not die, which is true, and the scary truth about untreated lyme disease. I also appreciate the fact that my not trying would hurt people I care about…unfortunately I understand that all too well. I also have a healthy concept of the fact that while I may never be normal, I can be “better”; I do not always have to feel as terrible as I have lately. Even given those reasons I still don’t completely understand; I guess I try because that’s just what one does, you get a diagnosis and you take the treatment…but that doesn’t change how I feel about the whole thing.

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The story of the cracked pot

By Sacinandana Swami

A water bearer in India had two large pots, each hung on one end of the pole he carried across the back of his neck. One of the pots had a crack in it, and while the other pot was perfect and always delivered a full portion of water at the end of the long walk from the stream, the cracked pot arrived only half full. This went on every day for two years, with the bearer delivering only one and a half pots of water to his master’s house.

Of course, the perfect pot was proud of its accomplishment and saw itself as perfectly suited for the purpose for which it was made. But the poor cracked pot was ashamed of its imperfection and miserable that it was able to accomplish only half of what it had been made to do. After two years of what it perceived as bitter failure, it spoke to the water bearer one day by the stream. “I am ashamed of myself and I want to apologize to you.”

“Why?” asked the bearer. “What are you ashamed of?”

“For the past two years, I have been able to deliver only half my load because this crack in my side causes water to leak out all the way back to your master’s house. Because of my flaws you have to work without getting the full value of your efforts,” the pot said.

The water bearer felt sorry for the old cracked pot, and out of compassion he said, “As we return to the master’s house, I want you to notice the beautiful flowers along the path.” Indeed, as they went up the hill, the old cracked pot took notice of the sun warming the wildflowers on the side of the path. The pot felt cheered.

But at the end of the trail, the pot still felt bad because it had leaked out half its load, and again it apologized for its failure. The bearer said to the pot, “Did you notice that there were flowers only on your side of your path, but not on the other pot’s side? That’s because I knew about your flaw and took advantage of it. I planted flower seeds on your side of the path, and every day while we walk back from the stream, you’ve watered them for me. For two years I have been able to pick these beautiful flowers to decorate my master’s table. If you were not just the way you are, he would not have such beauty to grace his house.

For the majority of my life I have heard this story every year at a martial arts camp, and it has always tugged on my heart. However, the older and sicker I get, the more it speaks to me.

Tonight, as I sat here trying to write the quintessential “Happy Thanksgiving!” post, I just couldn’t do it. I’m thankful, really truly I am, for so many things…I’m just feeling like a cracked pot right now.

It’s been a hard few weeks, I’ve been in a lot of pain and spending a lot of time in the “deep dark lyme place” of sad emotions.  I’ve had a lot of stuff going wrong with my heart, which I will write about one of these days when I have energy for that, that make me very stressed and angry.

Last weekend I had a flat tire on my car, so I set out to change it. I’d never done that before, but I knew technically how it should be done. With my sister’s help to lift things I managed it…and then was miserable for 3 whole days afterward. I just wanted to be able to do something for myself, to know that I could take care of myself in an emergency…and I did it, but I really should not have. I want to be able to do normal people things without hurting myself or feeling so sick I want to die.

I don’t want to feel like this anymore, I don’t want to be in pain anymore. I don’t want to be this sad person. I used to feel like a strong person, like I could cope with anything and still be a happy, positive person…not anymore. I’m angry that lyme and this pain have taken that away from me.


 

“When I was treating aids, none of the patients wanted to die, yet they did. Now, treating Lyme, the patients want to die because of the pain, but they usually can’t…Lyme takes you to the edge of death and leaves you there” Dr Jemsek.

Dr Jemseck gets it. That is exactly how I feel lately.


 

So tonight I will read the story of the cracked pot, and try to remind myself that I am simply a cracked pot and that somewhere there are flowers that I will be able to water with my flaws.

http://www.sacinandanaswami.com/en/s1a38/wisdom-stories/the-cracked-water-pot.html

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What you should know about chronic pain

This article has been circulating in the internet world of chronically ill people, and while I think it’s a nice letter, it kind of bugs me. A lot of it is very true, I guess I just sort of feel like that’s not really what I would want people to know about living in chronic pain.

I guess first I’ll take this list and comment on it, then I’ll add my own things.

TIPS FOR DEALING WITH PEOPLE IN PAIN

1. People with chronic pain seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.

2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.

3. Pain can inhibit listening and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid. – Super true for me, and I didn’t really think about it until I read this letter. I generally can’t look people in the eye when they’re talking, not because I don’t want to, but because it’s way too much stimulation to look, listen, think, AND feel the pain. 

4. The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much. – Yep, exactly what I was talking about.

5. Patience may seem short. We can’t wait in a long line; can’t wait for a long drawn out conversation.

6. Don’t always ask “how are you” unless you are genuinely prepared to listen it just points attention inward. – YES. I, as a general rule, don’t lie…if you ask “how are you?” you’re going to get a real answer, how long it is depends on who you are and whether I think you actually care. If I don’t think you care (or I don’t have the energy for a real answer) you’ll get something like “I’m managing” or “just the usual”. 

7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.

8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.

9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g.no place to sit or lie down).

10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain. – The biggest thing anyone can do for me when I’m in pain is to just be with me…I hate to be alone, I get very emotional when the pain is very bad. I need distractions and to know someone who cares is there. 

11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body’s ability to feel varieties of discomfort. – This is always a big problem for me, my worst pain is a very vague, almost impossible to describe pain that just radiates through my whole body. It frustrates me to try to describe it, and the best I’ve been able to come up with is “every individual cell in my body is screaming in agony”. I always get strange looks from people when I say that though, and I know no one understands what I mean…which just frustrates me more. 

12. We may not have a good “reason” for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized “disease”. That does not reduce the pain, – it only reduces our ability to give it a label, and to have you believe us.


 

1) The biggest, most important thing I want people to know about what it’s like to live with chronic pain is that it never goes away. Think about that, every single second, of every single day, of your entire life. Sure sometimes it’s worse than others, but it’s always there…just because I’m acting fine and normal, does not mean I’m not in pain. Most of the healthy people I know lose their minds when they have a toothache, a sprained ankle, a headache, or the flu…imagine all of those things, at the same time, plus more, every single day. Now you have a teeny taste of my life.

Think of a time that you injured yourself, (like a sprained ankle or something) some doctor somewhere probably asked you to “rate your pain on a scale of 1-10, with 1 being no pain and 10 being the worst pain you can imagine”, right? I really, really hate that question, and I get asked it ALL the time. I have a friend who used to play a game with me, every time she saw me she would try to guess what number my pain was at…she was generally right too, partly because she’s awesome, and partly because my number is pretty much always between 5 and 8.5. For 2 reasons, first of all, days under 5 almost never happen. Second, I never rate anything a 10, ever. In the movie The Fault In Our Stars, the girl says “I was saving my 10”, and that’s exactly what I’m doing. People with chronic pain will understand this, but it can always get worse. I never rate anything a 10, because I understand the fact that there will always be something worse than the worst pain I can imagine. I only rate things a 9 that send me to the hospital; I’ve only had a handful of 9s in my life. So basically 8.5 is the worst possible normal day I could have, and I have quite a few of those.

I really wish I could make you understand; I would never wish this on anyone, but sometimes I wish people could just spend a day in my body, because then they would understand what this pain is like. It’s brain-numbing; when it’s really bad I can’t think about anything else, I can’t do anything else except lay still and be in pain. Breathing is too much work, talking is too much work, thinking is too much work. I can’t eat, I can’t sleep, I can’t cry. Just existing is too painful. That’s an 8.5…maybe even a 9. It strips away who you are; I really think it strips away pieces of your soul.

It’s frustrating, I want to be able to do normal-person things…such a stupid little thing like walking to the mailbox, standing long enough to put my make up on (5 minutes), or sitting through a meal will cause me to go from a 5 to an 8.

2) The other huge thing I want people to understand is that I am ok. I know I make all of this sound like the worst thing that could possibly happen to someone…and I’m not gonna lie, it’s pretty terrible, but I do not hate my life. Actually, given the choice I don’t think I would change it…as crazy as that sounds. I’m not angry, I’m not bitter or hateful. I don’t need to turn to religion to find an explanation for my suffering, and I don’t need to make myself feel better with platitudes like “we are given only what we can handle” or “everything happens for a reason”. While these and others may be true, I don’t need to use them to make the fact that I am sick ok. However, I am human, I have my bad days too; occasionally I get sad, mostly about the things I wish I was able to do, and I sometimes get frustrated or pissed off. When that happens I just need a friend, I need to whine and complain about how much it all sucks. As a general rule though, I’m fine.

3) Relax! I won’t break. I don’t need you to do everything for me. I’m not going to get offended if you say whatever it is you think will upset me. As a general rule, I don’t need anything from you, other than for you to act normally and be my friend.

I meet a lot of people who are amazed at what I deal with every day, who don’t understand how I have such a positive attitude and accept the way my life is so well. I have no answer for those questions, other than I don’t know any different…I don’t remember what it feels like to not have pain, so I think that makes it easier, but it’s also just the way I am.

 

 

http://lifeinpain.org/node/2151

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My poor “broken” heart

It’s been a rough couple of weeks, I haven’t felt up to writing about it but I think I’ll try now.

In my post Salt, Socks and Heartbeats  I told you all about the heart conditions I had been diagnosed with, and that I would need to have a pacemaker placed. Well fast forward a couple of months, pacemaker is in and working fine, but here I am writing yet another post about my “broken” heart.

I was in the emergency room twice last week, both for heart issues. The first time was kind of crazy, I laughed about it because it was like straight out of the movies. My heart rate was very high so I drove myself to the ER and walked in, told the woman at the desk that something was wrong with my heart and was immediately plopped in a wheelchair, rushed to a bed, hooked up to an EKG machine….the next thing I knew there was a doctor and 5 nurses running into the room. The doctor stopped short, took one look at me talking to the tech and said “you’re STABLE?!”…”uh, last time I checked?”…

So they rushed me to a private room, and started hooking me up to all kinds of monitors. They had called a “code” like on tv, because every nurse in the ER was in my room running around like I was dying! They hooked me up to the crash cart! (That thing that they use on tv that they yell “clear!” and it shocks you).

Long story short, they had to give me adenosine, a medication that temporarily causes ventricular asystole (an episode of no cardiac activity) and is used to reset the heart and pull it out of dangerous arrhythmias. In normal person words, they stopped my heart temporarily and lucky for me when it restarted it decided to behave itself and beat like it’s supposed to.

A check of my pacemaker showed that my heart rate had been an average of 223, with a maximum of 273, for an hour. That is NOT good for your heart.

The ER doctor was very nice, and did not make me spend the night in the hospital on the condition that I see my cardiologist the next day. At my appointment my cardiologist said that I was not on nearly enough beta blocker (medication to lower your blood pressure, but also lowers heart rate and can help prevent arrhythmias), so he doubled my dose.

Fast forward 24 hours and I’m back in the ER. This time it was an average of 242, with a maximum of 273, for half an hour. My poor poor little heart. :[

Again, back to my cardiologist I go…this time I insist that the beta blocker (obviously!) isn’t working so we switch to another one, that is a much higher dose and I take it twice a day instead of just once.

The good news is I have managed to make it 6 nights so far without a trip to the ER (isn’t sad that I’m counting?).

The bad news is my heart is still acting up…it’s doing some sort of strange arrhythmia thing as I write this, which isn’t ER worthy, but doesn’t feel good. My poor cat is sleeping on my chest and keeps jumping because she feels my heart do something strange.

My gut feeling is generally right…and it says I am headed for at least one more surgery, maybe more. That’s a lovely thought. And no, I’m not being dramatic, depressed, or whatever other way you want to minimize what I’m feeling. I’m a realist, and I’ve been sick long enough to know my body and when something is really really wrong; and this is bad. 

I hate this. I hate that every time my heart does something weird (which is ALL the time) I panic, “are we running to the ER again?” “is it going to stop?” “what if this time something really bad happens?”.

Tonight I am sad that I feel like any minute now my body will turn on me again.

I’m angry that I underwent a (really terrible) surgery that was supposed to fix things, and it didn’t. Now I may be looking at another (probably terrible) surgery that may or may not actually fix it this time.  I’m angry that my primary care doctor basically “called” this 2 weeks after my pacemaker surgery, when she questioned the cardiologist’s decision on which device to give me…if she was right all along I am going to be furious.

I’m overwhelmed with all that needs to be done now, I am going to get a second opinion from a different kind of doctor who specializes in electrical disorders of the heart (probably where I should have been going all along), but that means tons of paperwork, going over my entire medical history, and the stress of wondering whether or not he will freak out over my lyme diagnosis and antibiotic list.

I’m scared that it could happen again at any moment. I’m scared that I know that having heart rates that high is damaging to your heart, so what kind of damage has already been done? And how much more damage has to be done before we can figure this out and stop it?

This sucks.

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Where o where has my brain gone?

I miss my brain.

I’ve been sick my entire life, but there were quite a few years where I was not “THIS” sick…and I was smart, and funny, and I thought about things. Now? I’ve spent the majority of my waking hours today staring at the wall; I’ve been sitting here for an hour trying to write something worthwhile and I simply can’t. So instead I tried to read, yeah right!

Today I feel worse than usual, which is saying something. It’s probably the IV antibiotics I started last week catching up with me, or maybe the fact that I’ve had a particularly long and stressful week, maybe that’s catching up with me. I’m lacking sleep since I spent 2 nights this week in the emergency room, I’m stressed because my doctor keeps blowing off my concerns and the fact that I keep ending up in the ER, I’m angry about that too. I also probably did way too much housework all at once last night. Whatever the reason, my body and mind have both crashed, and it sucks.

I recently went back to school, which is awesome, but it’s made me realize just how bad my brain is now. I have realized that I don’t remember much of anything. Of course I can remember dates, conversations, when my doctors appointment is, etc. but I cannot for the life of me remember what I read 5 minutes ago or what the professor said yesterday in class. Thank goodness I take awesome notes…a learned skill I’m sure, since this issue has been getting worse and worse over the last 8 years.

 


 

So I wrote this 2 1/2 hours ago, yet never posted it because I’ve been sitting here staring at nothing like a zombie. Where has my brain gone?

 

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The Great Hibernation

I am planning a hibernation. A for real, serious, not leaving my house for a very long time, hibernation.

I’m stockpiling food, committing to absolutely no obligations, warning everyone that every plan is tentative at the moment, and getting things that I’ve been wanting to do done so that they won’t be hanging over my head. I’ve got a list of tv shows and movies to watch, books to read, and projects to work on. Oh, and my cat to keep me company.

I’m ready. Let’s do this.

Fact is, it’s not actually going to happen, because unfortunately life requires leaving the house occasionally. Regardless, I’m preparing for it anyway.

I just don’t want to leave my house; I mean, I do but I don’t.

I am not depressed, or isolated, or antisocial, don’t worry…it just hurts.

The light hurts, the air hurts, the pressure exerted on my body by gravity hurts…breathing hurts, moving hurts, talking hurts. (I mean physically hurts)

Existing hurts. 

I just don’t want to try anymore, I don’t want to wake up and put on my face and pretend everything is ok when just breathing hurts.

So starting Thursday of this week I’m hibernating. I may come out occasionally, but if I don’t want to I’m not going to…and if I don’t want to put on my “everything is ok” face, then the world will just have to deal with it! I have spent the last 15 years or so putting on my face and I am going to allow myself the next few months to not have to if I don’t want to, I think I’ve earned that.

Why Thursday you ask? Because on Wednesday I am having my picc line placed to start IV antibiotics for lyme on Thursday…so I am preparing myself to most likely feel really terrible for the next few months.

It’s gonna be a super fun time…which I am sure ya’ll will hear about :]

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What (or who) are we really fighting? (sorry, long rant!)

Tonight I am angry. No, I am livid. 

I’m sad too. 

Yesterday I saw my primary care doctor, one of the things on my (as usual, very long) list of things to talk to her about was pain medication. Months ago she prescribed me Norco (hydrocodone and Tylenol combination, pretty low dose stuff), I still have some left since I don’t take it every day, but it’s just not working anymore. Apparently my pain has gotten so much worse lately that it is just not strong enough any more. 

This isn’t the first time this is happened, it happened last fall too. Last fall I went from Tramadol (non-narcotic) to OxyContin, over night. So I’m not shocked this is happening, especially given that I have been treating lyme for 5 months which has made me very toxic and inflamed. 

So my doctor asked some questions…

“How often are you using the meds you have?”

           “Probably 4-5 out of 7 days in a week”

“How many are you taking?”

           “2 at a time, every time, and usually twice a day.”

“How often does it not give you any relief?”

          “At least 8 out of 10 times”

“WOW.” 

           “Yeah.”

So she wrote me a script for something else, something stronger. But that’s not what I’m angry about.

I’m angry because I have been to SIX pharmacies today and still do not have my pills! 

If you’ve never experienced the “war on drugs” (aka, the “war on chronic pain patients”) first hand, here is a little illustration for you. 

* Note: This post applies mostly to schedule II drug, ie. oxycodone, oxycontin, dilaudid, morphine, methadone, even ritalin and adderall. Schedule III drugs, such as hydrocodone and codeine, are still restricted but not as severely. Schedule I drugs are things that are illegal to prescribe and use, such as marijuana, heroin, LSD, Ecstasy, etc.; even though many of these are said to have medicinal benefits (that’s a post for another day, but don’t expect it from me any time soon!). 

1. Doctors are all terrified to prescribe pain medication. Everything is tracked and charted and investigated like crazy, and doctors don’t want to have the government breathing down their backs. So they just don’t prescribe meds at all, even when their patients are obviously in pain. Generally doctors will tell you to go to “pain management”; special doctors who are supposed to specialize in managing pain, but in my experience are even MORE scared of writing prescriptions than regular doctors are! Even if they do write scripts, for some reason they tend to be real jerks, and have their own sets of rules. I’m talking drug tests at every single appointment to make sure you are only taking what they are prescribing, written and signed contracts agreeing not to take scripts from any other doctor, etc. 

2. Once you DO manage to get a script, good luck finding a pharmacy that carries what you need! 

3. If you do find a pharmacy to fill it, have fun jumping through all the hoops and following all the rules! Every pharmacy, and every location within a chain of pharmacies, has different rules. Some require 2 forms of government ID, others will hold your script for 24 hours before they will fill it, other’s won’t fill the script if you don’t live in the same zipcode as the store. There are rules about how many pills you can get at a time, how many refills you are allowed to have (usually zero), etc. 

For example, my problem today; my doctor wrote a script for 20mg, but of course no one has 20mg tablets in stock. With other, non-scheduled, medication the pharmacy could simply call the doctor and get approval to give me twice as many 10mg tablets, and I could just take 2. Not with pain meds! Anything that is a schedule Ii or higher cannot be given as a verbal order, so I would have to go back to the doctor, get a script for 10mg, and then go back to the pharmacy…I may as well wait the week for them to order the 20mgs!

Meanwhile I sit here in pain, taking double and triple doses of the crap I have now, and still getting very little to no relief. 

The last time I was on a schedule II drug (OxyContin) I swore I would never do this crap again. I said nothing above a schedule III (much fewer restrictions). It’s just terrible to have to deal with.

Already in tons of pain today, I spent the better part of my day running around town to 6 different pharmacies, just to be told “no” every time. Naturally this made my pain much worse, and completely exhausted me.

Not to mention that there is this huge stigma around people who use narcotic pain medication, so many people (people in the medical field included!) assume that if you have a script for pain meds (especially for a schedule II or higher) you must be a drug addict. So you get strange looks at every pharmacy, and heaven forbid you get frustrated that the 6th, or 10th, or 12th, pharmacy you’ve been to doesn’t have it, because then you’ve just proved them all right.

I experienced this first hand two weeks ago when I had my pacemaker surgery. The doctor, seeing my low-dose pain medication in my chart, assumed that I was downplaying the amount that I was on, that I must be a drug addict, and refused to provide me with pain medication during my recovery from surgery. That is just cruel. 

It’s demeaning. It’s wrong. It’s pathetic that chronic pain patients are treated this way. 

Now, I am not denying that there are some people who abuse prescription pain medicine, but it is not fair to make those of us who desperately need, and are responsible with, our pain medication suffer. 

So as you can see, I’m furious (sorry for the long rant, by the way!). But I am also sad; I’m sad that people are treated this way, and I am sad that I am back at this place where I need to deal with this. When I got off OxyContin 7 months ago I swore that I would never again take something higher than a schedule III, it was too distressing to have to deal with all of this crap. Yet here I am again; once more I’m running all over town looking for meds, feeling angry and demeaned and mistreated. 

It’s not fair, and it sucks. 

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