Sidelined by Lyme

My war against Chronic Lyme Disease

Losing my super power March 27, 2013

Filed under: Uncategorized — dingmanh @ 9:28 am

I keep coming across this nagging feeling that I’m losing connection to my own insight. The closest I ever will come to a super power. Its fading because of my attempts to reconnect with the world.

 

As I try to shift my status toward being an active participant within society, I start to lose a part of myself I had gained and strengthened during my Lyme journey.I had began to discover what it takes to live a centered life. Despite my uncovering a start to this epiphany, I have since found myself left of center.

 

Though the message is basic, its difficult to maintain with so many surrounding extraneous inputs. A good number of them turn out to be meaningless static. Which, as it turns out, serves to reinforce my isolation–this, many people with chronic illness will understand. Such static reminds us the world can be a lonely place. Alone, surrounded by 7 billion people.

 

All the little everyday things we do, using up so much energy in those acts that I have come to feel distant from myself. Far left of center.

 

I remember feeling hopeful in taking my first step toward enlightenment–realizing the weight of finding one’s center and knowing how to get back again. At the moment, I feel clearly too distracted to find my way back. Being off-center brings a disconnect that I’m trying to bridge. Without a centered state, my ability to access my own insight remains inhibited. There are obstacles I can’t name that leave me believing that my only human super power may just fade for good.

 

Is there a lost and found box for that kind of thing?

 

I thought I had come to understand myself within a larger context. The act of living has clouded my point of view. In feeling removed from insight, it seems I have lost my compass.

 

My insight helped me to feel clear for the first time since my Lyme journey began. Even if it was vague and only in degrees, it meant something then. It was hope. Letting Lyme, in its horrific nature, not have been in vain. Insight is my point of view to live by. Giving meaning to the pain of my lost year. Making meaning from difficult days will be my silver lining as I meet tomorrow. Lyme will not have won.

 

Faded or not, I will find my super power even if engaging in this world feels like kryptonite.

~ H

 

Unknown

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An end to my hermitage September 16, 2012

Filed under: Uncategorized — dingmanh @ 5:15 pm
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I have stayed away too long. The PICC line is still in. Its been over five months with three IV med changes. As it turns out, I am allergic to Rocephin and most likely all other 3rd generation cephalosporins. Then I tried Leviquin and Azithromycin. No real progress to be found here.

I once had high hopes for the PICC, however at this point, treatment feels like guess work no matter what type. This Lymie just wants to get better and back to life. Unfortunately, there ore no guarantees in treatment except maybe herxing.

I’ve been feeling listless and missing Grad School. I am still trying to get my head around how to best co-exist with Lyme while maintaining a routine common to most in today’s society. To a certain extent, I know it comes down to just doing, trying. Yet the devil’s in the details so something tells me it won’t be that simple, but one must start somewhere.

To the Lymies out there and those with other chronic illness — if you have any tips about coping/organizing one’s life, do tell. I simply seek to live life to the fullest with Lyme.

P.S. Glad to be back ūüôā

HD

 

Infuserve America? If you know anything, please tell! April 15, 2012

Filed under: Uncategorized — dingmanh @ 8:18 pm

In the e-book Infusing for Lymies, the author references a resource to obtain IV Rocephin called Infuserve America. I have contacted them recently to get a quote for my meds and the accompanying supplies to infuse at home through my PICC line. The prices they quoted were about half of what I am currently paying for infusion services. What I was wondering, though, is whether anyone reading this has dealt with Infuserve America, and what kind of experiences they have had in those dealings. If I buy my meds through this company, I want to know that they are reputable and that I can trust in the quality of their products and services.

 

In my previous post I mentioned that I was hoping to get my meds and supplies from Walgreens. However, you should know that it will only work out for people who do not require more than thirty days worth of medication.

 

Any input is appreciated.

 

~H

 

My PICC Line Is In April 6, 2012

Here is my new PICC line. It's even purple, my favorite color. Not to mention, very sore and painful at the moment.

 

Its over. I feel sore, fragile and quite weak. Or really, if I am to be more accurate, my PICC journey has only just begun. Hello IV herx hell, I hope your are short lived.

 

I have only been getting sick over the past two weeks or so (wheelchair bound, etc.) something needed to happen. An intervention had to occur. The procedure hurt more than I expected it to. It has been three weeks since my Lyme Doc advised I get a PICC line for IV Antibiotics to be added to my oral protocol.

 

Featured in a previous post, this leg warmer turned PICC cover is the perfect length, no modification required.

But now I’m moving forward somehow even with my horrid herxing. I must believe and keep telling myself that this is the turning point toward progress, however slow progress is what truly matters.

My Smiley Face balloon with lime green and pink ribbons. He always came home with me after a surgery or a procedure when I was a child.

 

I will write again (hopefully soon) when I feel truly well enough to do so. My best to you Lymies and friends. Now I’m off to get some well needed rest!

 

~ H

 

A Must Read For Lymies On IV March 31, 2012

 

I came across an awesome free e-book titled “Infusing for Lymies.” For me, reading this book gave me a sense of hope (when recovering from Thursday’s bad news, RE: insurance.) Mom read me the complete contents of the e-book in less than an hour. By the end of it, I felt quite relieved about my upcoming IV PICC line treatment with Rocephin. The book empowers Lymies toward independence, ie. do it yourself meds mixing that has the added important benefit of saving (what could amount to a lot of) money on IV treatment. The book also contains helpful hints as to help with handling herxing and Lyme diets, etc.

 

In my opinion, it is a must read for any Lymie on IV treatment that doesn’t have the luxury of health insurance coverage. Helpful hints from this book are a great start to taking control of your IV treatment regiment, not to mention that the tips may help in keeping IV treatment from completely breaking the bank. Without this guide as a starting point, I would have no hope of avoiding big loans to cover the debt. At the moment I hope to avoid this… As I know my IV treatment could over six months time cost as much as one year of private undergraduate education, like $30,000 or so. That’s crazy, right?!

 

I fully trust my mom to help me mix and prepare meds, though at the moment she is not so confident. I am hoping to only go for two weeks with an infusion service, but after that point, I would like to get my meds directly from Walgreens Pharmacy in bulk as well as supplies for dressing changes. The RN at my LLMD, doctor S’s office will be doing my dressing changes once a week at that point. This seems like the best set up given the circumstances I’m in.

 

I just want to get my PICC in and get on and over with the herxing. I am hoping¬†next week will be my week to get it over with. I’ve had enough of this run around madness! ¬†I am just not improving. Still too sick. Here’s to an ending and eventual health!

 

~ H

 

They Said No!

Filed under: Uncategorized — dingmanh @ 2:11 pm
Tags: , ,

How could the health insurance company say “NO?” Flat-out no. No to everything. No¬†PICC Line procedure. No 28 days of IV Rocephin, let alone more. The decision will be appealed because they expect patients to simply give in without a fight. Well not this Lyme chick! Not now, not ever. With the help of my mom and my LLMD’s RN, I will appeal. And aim to win! Turning anger into a productive positive path.

 

~ H

 

 

Sick. Tired. (of) & Waiting. March 24, 2012

Filed under: Uncategorized — dingmanh @ 8:04 pm
Tags: , , ,

I am sick and getting worse. Not herxing, just worse. No progress at all. Only moving backward in terms of Lyme symptoms and treatment. I know I’m not herxing, so there is no positive side to my suffering at this point. Ever since my appointment with my LLMD, Friday March 16th, I’ve been waiting and praying for the green light on my PICC procedure. All of the paper work arguing medical necessity was sent to the insurance company this Wednesday, and they have 72 hours (in business days) to come back with a decision. I fear the insurance company will be little help, if any, with the IV Rocephin, etc… In this particular scenario, I can’t even imagine hearing “no.” I need a “yes.” Give me the green light so I can move on! I hate all the unknown in this situation. I really have no control. What I would give to have a little control. Instead, I’m just left waiting for the procedure to be scheduled¬†and over. I am not in any way looking forward to the extreme herxing that will befall me when switching to the IV Rocephin. History tells me it will last seven days or more. I’ll be flat-out in bed for as long as the herx lasts. I just want to find myself on the other side of that hell.

 

I can’t wait to come back to the point where I am able to do some small stuff with my day. This week I haven’t felt well enough to do anything, but be sick. Just illness. Acupuncture was no help, when usually its the only thing that really helps. I’m only getting worse and I don’t understand why. Why now? I am so sick. Purely exhausted and left to wait. Monday there should be word from the health insurance company and with some hope and prayers, I’ll have my PICC line in, working my way to the other side of the herx some time next week. It feels funny to be egging on the bad times of this illness. ¬†At the moment, my Lyme symptoms are flaring bad enough as it is! For now, all I can do is be sick, nothing more. It seems that I can’t help but feel down as my body gives out and my mind melts into a deep fog. I feel trapped in a do-nothing body complete with a mind too jumbled to be translated. Lyme bites!

 

~  H