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Invisible Illness Week Questionaire (Re-Post)

by Eric Rutulante  •  June 6th, 2010  •  3 Comments »  •  LymeBites Blog, Re-Posts

June 6th is Invisible Illness Awareness Day.  I am re-posting something I had written last September in response to living with an invisible illness.  I thought today a good day to share it.  Please take the time today to consider someone with an invisible illness, and please don’t tell us we don’t look sick.  There, now you’ve learned something and can veg out for the rest of the day (after you finish reading the post of course).

This is a re-post from my personal blog written September 20, 2009.  A friend of mine (also a sufferer of an “Invisible Illness”) and I both answered this questionaire about having invisible illnesses.  It’s been a while since I’ve read it, and I’ve recently told a few people about answering these questions at that time (I’m going to answer the questions again now, 6 months later and see what has changed after 6 more months of being sick.  I will post that when I do.)  So I decided to repost it for others to share what it can be like, as well as to see where I was 6 months ago and where I am today.  There are a lot of spelling or grammar errors…instead of fixing them, I’m leavint them so you can see how difficult it was for me at times to even form a complete sentence that would make sense.  The brain fog and cognitive dysfunction associated with Lyme disease and it’s co-infections can be absolutely astounding.  This is something I worked on and edited and corrected before I posted it, it took a while and still ended up with a lot of errors.  But it’s all part of what was going on at that point in my illness.  Also please note this was 5 weeks before I saw an Lyme literate physician.  At this point in time (5 months into my illness) I was being treated by a rheumatologist as best she could until I could get into see a Lyme specialist. 

1. The illness I live with is: Chronic/Late Stage/Disseminated Lyme Disease, also called neuroborreliosis, which is caused by a bacteria called Borrelia burgdorferi or Bb. The bacteria is a Gram negative spirochetal bacteria, this structure allows the spirochete to move efficiently in corkscrew fashion through viscous media, such as connective tissue. It has a similar genetic makeup to T. pallidum, the agent in found in syphilis. Bb are microaerophillic and slow-growing—the primary reason for the long delays when diagnosing Lyme disease. This bacteriological infection comes primarily as a result of a tick bite but Lyme spirochetes have also been found in semen and breast milk, however transmission of the spirochete by these routes is not known to occur. Congenital transmission of Lyme disease can occur from an infected mother to fetus through the placenta during pregnancy.
Early symptoms may include fever, headache, fatigue, depression, and a characteristic circular skin rash called erythema migrans. Left untreated, later symptoms may involve the joints, heart, and central nervous system. In most cases, the infection and its symptoms are eliminated by antibiotics, especially if the illness is treated early. Late, delayed, or inadequate treatment can lead to the more serious symptoms, which can be disabling and difficult to treat. Occasionally, symptoms such as arthritis persist after the infection has been eliminated by antibiotics, prompting suggestions that Borrelia causes autoimmunity.
Ticks that transmit B. burgdorferi to humans can also carry and transmit several other parasites such as bartonella, babesia, ehrilicha, and other co-infections. I believe I am also co-infected with bartonella, a version of cat scratch fever. Lyme Disease is an invisible illness, you can’t always outwardly see the symptoms.

(http://en.wikipedia.org/wiki/Lyme_disease)

2. I was diagnosed with it in the year: 2009. We know I have had it since 2003, every medical problem I’ve had in that time is a direct result of Lyme disease. There is a possibility I’ve had it since I was a child (including a hospitalization for a strange arthritic virus in 1977). There are other time markers that could show when I was infected, including thyroid disease in 1987 and shingles in 1998. What we do know is it’s been ravishing my body for anywhere from 6-32 years until diagnosis with a CDC positive Lyme blot in June 2009.

3. But I had symptoms since: 2003, possibly longer. Since 2003 I have suffered and been treated for the following:

Irritable bladder system (was told nothing was wrong with the plumbing, I just had a weak bladder and would have to live with it)

Kidney/Gall stones, in and out of ER’s and Dr’s for what they believed to be passing stones, only no stones were ever found. Final decision was “maybe you already passed it and there is no sign of it having been there”. The pain neve went away, but no Dr could ever find out what caused the pain.

Depression/Anxiety: I’ve been treated on and off for years for both, usually without being able to find any reason for the triggering of these symptons.

Allergies/Sinuses: About 10 years ago my allergies took a life of their own. Each year progressing, until 2 years ago I began with constant sinus/ear infections with brutal allergies. I was told there ws nothing that could really be done, it was just allergies. I went from taking 5-7 medicines a day for allergy symptons to none since being treated for Lyme disease and seeing a Nutritionist for nutrition response therapy.

Fibromyalgia: Over the past 10 years or so I’ve developed Fibromyalgia symptons. At first I was told by 2 Dr’s that was not a real condition, and that men did not get it. AFter diagnosis I found a Dr who tested me for it and it was positive. Fibromyalgia is one of many diseases caused by Lyme disease.

In 2003 I went to a cardioloist for heart problems. My heart raced, I had chest pains, and could feel it skipping beats. After wearing a monitor for a while they said my heart was exceptionally healthy, just threw in extra beats. After being diagnosed I have been in the ER with heart attack symptons, where I was told Lyme meningitis had settled in my chest, my heart was very healthy but the Lyme is making it beat weird and causing palpitations.

I injured my back in an accident in 1997. Since then I have had symptoms on and off until a year ago the pain got unbearable. I began a series of specialists who called my case an “onion”, peeling layer after layer until they found what was wrong. After 5 steroid injections in my back (the last in April of 2009) the Lyme disease is believed to have actually activated, due to the steroids in my spinal fluid. 2 weeks after my last injection I lost vision in one eye, and that began the journey of being diagnosed with Lyme. (Please note, since being on Lyme treatment my back pain has almost diminished.)

I have strange rashes on my upper body that have been there for 6 years.

4. The biggest adjustment I’ve had to make is: knowing my life will never be the same. I will get better, I will fight this until I have no fight left to give, but I know I will never fully recover. I know this will affect the rest of my life after recovery. I know my immune system is greatly compromised. A common cold will knock me on my ass for a lot longer than the average person. I know I needm ore sleep than the average person. I know that I can’t handle the stress I used to thrive on. Now it becomes overwhelming and I have to simplify things. The hardest thing for me to accept is having to simplify a life that I loved, full of complications and complex relationships and happenings. I have to mourn that life, and learn to adjust to the life that is ahead of me. It doesn’t have to be a bad thing, it just has to be different.

5. Many people assume: That having Lyme disease is like a flu. Each day means you are better. Lyme does not work like that. The pain in my chest may be gone today, but I may not be able to walk today, or I may not be able to remember how to drive to a friend’s house. The disease changes every day, and effects every part of the body. It takes time, but I don’t think friends and family understand that…they assume having a good day is a sign of healing. It will be months before i begin to get any of my energy back, before I can begin to get better. It’s hard for people who are close to me to understand that. I think they feel in order for them to have hope they need to see quantitative changes in my recovery. Lyme does not work like that. Also, people assume I am not sick if I look like myself. It gives people a false sense of hope. Know that on a good day, or when my body is not twitching, that my body is still racked with pains and sensations I cannot describe. It’s not what you see with Lyme disease that is horrible, it’s what you don’t see. Please understand I may look healthy on occasion, but it doesn’t change what’s going on in my body.

6.The hardest part about mornings are: Normally upon waking there is a 3-5 minute period after awaking where you can’t feel any pain. At first I would think I had died during the night. Now I feel those moments when I wake up, and hold on to them as a reminder that some day I will no longer have constant pain. The first hour after waking up is the hardest. I wake up with panic attacks on a daily basis. I spend the first hour fighting the feeling of panic. With time I can focus in on the reality, and feel better. It is uncontrollable and irrational. I may spend 20 mins worrying about a phone call for no reason, or wake up thinking I’m late for work and need to call in. It takes that full hour to get a hold of my self, to calm myself and remind myself what is going on. The other feeling is pure exhaustion. Often from insominia. The frustration of waking after 10 hours of sleep and feeling exhausted is overwhelming. Today I thought I would have to sleep all day and turn my phone off, because of how exhausted I was when I woke up. But with time, you begin to start moving as best you can fo the day. The other feeling upon waking is doing a full body scan. Does somethiing new hurt? Did anything change during the night?

7. My favorite medical TV show is: Scrubs. Laughter truly is the best medicine.

Two important things: My iPhone. When I wake up it’s filled with msgs from my loved ones checking on me as a new day begins. I’d be lost without it. My medicine caddy is the other important item. From antibiotics to pain killers to Benadryl, I live out of that little caddy to get me through each day.

8. A gadget I couldn’t live without is: Remote. Many days while the world goes on without me, I rely on my TV and DVD player to keep me entertained and keep my mind off of what I’m missing.

9. The hardest part about nights are: Insomnia, feeling alone in the middle of the night when you are so tired you can’t keep your eyes open, but the pain and sensations going through your body cause you to jerk uncontrollabley to the point you end up rolling aound on the floor moaning in pain. Many mornings I’ve woken up on the floor of another room, having finally fallen asleep there.

Pills.

10. Each day I take: 46 pills, and 5 liquid supplements. This does not include pain relievers, pain killers, sedatives, anything “as needed”.

11. Regarding alternative treatments: I believe in them whole heartedly. But as a compliment to traditional medicine. We need them both. Any person who has told me to rely just on alternative medicines, I’ve walked away from. I need science just as much as anything else now. I’m lucky to have an specialist who is open to those treatments and works in conjuction with my alternative treatments.

12. If I had to choose between an invisible illness or visible I would choose: I’d never choose either. I’m blessed with amazing friends and family, I don’t have to convince them I’m sick with my “invisible illness”. Chronic pain is chronic pain, I would not choose it either way.

13. Regarding working and career: on hold. In 4 months I’ve missed over 500 hours of work. I’m lucky I work for the gov’t, where I have benefits and programs to help me, otherwise I would have been homeless months ago. I think what I’ve accomplished in my 11 year career with the state, all the while having Lyme disease. Some times I get sad wondering what I might have accomplished with life had I not been sick, but I can’t dwell on the past, I need to concentrate on the future. I have every intention of returning to work and my career.

14. People would be surprised to know: Many Lyme patients take their own life before ever getting better. I feel for those who suffered so much they felt they had no other choice. I could understand feeling that way if I did not have my amazing friends and family here supporting me. I want to fight for those who are too sick to fight for themselves. I am going to get better, and make sure that no Lyme patient ever feels they have no other option other than taking their own lives. I will devote my life to fixing this. No body should have to suffer in such silence. The other thing is people saying “you’re amazing” for doing this. Doing what? Fighting for my life? I do not feel special because of this fight, I do not feel strong or empowered. Some days I struggle to wipe my own ass in the bathroom. That is not a feeling of empowerment. People say how amazing Lyme patients are for fighting, but they are wrong. It’s not a fight we chose to fight. We are all in reactive mode. I’m fighting for my life. To stay alive, to get my life back, to help others. I don’t feel special because of that, I feel human…I’m doing what I need to do to survive, that’s all.

15. The hardest thing to accept about my new reality has been: the Losses. Friends (it seems hard to believe, but you lose friends…not because they’re evil or mean, but some can’t deal with it. For some their life goes on without you. It’s so hard to see your life go on without you in it. Also I miss work…I miss the satisfaction of doing a good job. I miss the chaos of working in a budget office. I miss the socialization, I really love my coworkrs, they are more than friends to me. I miss all of that.

16. Something I never thought I could do with my illness that I did was: Tell people what they really mean to me. This disease has brought me so much closer to my family, my friends, my circle of life. I’ve learned to really appreicate the little things having people in my life means. Maybe without being sick I’d always take that stuff for granted.

17. The commercials about my illness: There are none. Thankful for Under Our Skin and the awareness that this documentary is bringing worldwide to Lyme disease and the politics behind it. (http://www.underourskin.com)

18. Something I really miss doing since I was diagnosed is: write. The brain fog makes it so hard to get anything down on paper. I also miss driving without anxiety.

19. It was really hard to have to give up: Everything. Lyme has taken everything from me in the past few months. I fight daily to get it back. There’s nothing harder than giving up your life.

20. A new hobby I have taken up since my diagnosis is: Education. There’s got to be a way for me to keep someone else from going through this hell.

21. If I could have one day of feeling normal again I would: Go clubbing with friends. I’d dance. I’d lay in the sun with my friends and laugh at inappropriate jokes. I’d go for a walk without having my leg give out on me. I’d make up for all the times I’ve had to cancel or miss out on time with loved ones.

Outside the Doctor’s Office

22. My illness has taught me: Dr’s cannot be trusted with your life, you need to take some responsibiliy yourself. If I let the Dr’s be in charge I’d be in a wheelchair now wondering what was wrong with me, being told I was “cured” by gov’t guidelines. It has also taught me love is not pretty. It’s not well dressed, well groomed, and it doesn’t always smell good. Love can be ugly, but it’s the most wonderful thing any of us can ever feel.

23. Want to know a secret? I’m scared to death. Every day I wonder how much longer I have. It makes me fight so much harder. At the age of 36 I should not be so concerned with my affairs being in order, because I know my heart could stop from Lyme disease at any time. It’s not likely, but it’s scary to have that realization out there. My motivation for fighting is in part fueld by fear. I’ve learned to play “in character” when I’m with friends, the role of who I was. But in the back of my head I’m always scared of what this disease may do next.

24. But I love it when people: laugh with me. It’s funny when I put the dishwasher detergent in the freezer and the ice cube tray in the cabinet. If I didn’t laugh, I’d cry…I’m lucky to have friends to laugh with me when I can’t think of the right words or forget their names.

25. My favourite motto, scripture, quote that gets me through tough times is: (I’m stealing this from another Lymie…it really sums it up)

Sometimes you wake up. Sometimes the fall kills you. And sometimes, when you fall, you fly.
-Neil Gaiman

Currently listening to: DMB Groogrux King, and Eminem Relapse. Also Coldplay seems to have a calming effect on bad days.

26. When someone is diagnosed I’d like to tell them: This is where you have to take your health in your own hands. If you have a Dr who tells you anyhing you don’t agree with, you can find help elsewhere. Do not take what your Dr says as truth…you need to be actively involved in your own health and recovery. I’d also tell them they have a friend in me, and all the info and resources I’ve spent 4 months getting together, let me help you if you don’t know how to help yourself.

27. Something that has surprised me about living with an illness is: How hard it is for people to accept you are sick. That health insurance, thta which is supposed to help us, is usually against us. That Dr’s do not know everything. And that friends and family will always be the best medicine.

28. The nicest thing someone did for me when I wasn’t feeling well was: I couldn’t list one single thing. From my friends doing a benefit to help me pay for my treatment, to a random phone call or email sending me healing wishes and letting me know I’m loved. The list is unending of what they have done for me while sick.

29. I’m involved with Invisible Illness Week because: Because so many of my friends suffer in silence with their own invisible illness. MS, Fibromyalgia, Chiari…this isn’t just about me, or Lyme disease. This is for everyone who has one of these illnesses that destroys you from the inside out. I need people to understand how sick I am. I need people to get involved. I need people to protect themselves and their children from suffering like this. The more people know what’s going on inside my body, the more likely they will be to take action for themselves in the future.

30. The fact that you read this list makes me feel: like there is hope…we can spread hope quicker than a bad case of Herpes on Prom night. Let’s let hope and knowlege spread quicker than the disease, together there is something we can do. Let’s do it!!!

One Year Sick…Now What?

by Eric Rutulante  •  May 10th, 2010  •  1 Comment »  •  LymeBites Blog, May is Lyme Disease Awareness Month, Paint May Lyme Green

Hello everyone, and welcome to my first official post of my second official year of being debilitated by Lyme disease.  Some people reading this may be people who I don’t talk to regularly, or that aren’t aware of the details of my journey with this disease.  I’m sure there are people who think “is he STILL out of work?”  “Why isn’t he better yet?” 

Believe me…I think the same questions, usually on a daily basis.  But for whatever reason, my journey with Lyme disease continues.  It was one year ago last week that I woke up sick, and I’ve been sick ever since.  I was diagnosed with Lyme disease in June of last year, and then in October when I finally saw an LLMD (Lyme Literate Medical Doctor) I was diagnosed with Chronic Lyme Disease, as well as the co-infections Babesia and Bartonella. 

When initially diagnosed I was given 21 days of medicine and told I would feel better in a few days.  But I didn’t feel better in a few days, I felt worse.  I thought I was going to die to be more specific.  My friends began to scramble for who got which DVD’s and CD’s as I told them I was sure I was going to die. 

But I didn’t.  I was told there was nothing else that could be done when I was not better in 3 weeks.  I knew that could not be right.  That is the day I had to become my own advocate for my health as far as Lyme disease was concerned.  I had to do a lot of research, and was shocked and horrified at what I learned.  A broken system that had somehow allowed a disease to run rampant, without proper testing, diagnosis or treatment. 

I’m an intelligent person, though at times Lyme disease robs my mind from me.  But I can distinguish logic from nonsense, and that’s how I began the journey to fight a broken system, and a broken body. 

I began with a Lyme specialist last October, and have been with him ever since.  None of this is covered by health insurance, so I lost my home in Albany and had to move in with family while I began IV antibiotic treatment to fight this disease which had taken over my body.  I had my appointment with him last week, ironically on the anniversary of the day I became sick, AKA my sickerversary. 

About 2 or 3 weeks ago I had a break in my nerve pain.  The one thing that just seemed to always be flaring, and at full force.  I would say at least the last 2 years I have had this constant nerve pain.  It of course became much worse over the year before my diagnosis due to a series of steroid injections into my back.  I was assured this would cure the arthritis that had settled into my back due to an old injury.  Nobody every considered the fact that Lyme disease was the culprit of years of back pain, not an old injury.  So by the time I became incapacitated by this disease last year the nerve pain was at an all time high, and each day it only seemed to get worse. 

I take a plethora of medications and supplements to fight this nerve pain.  Thanks to a team of dedicated and knowledgeable doctors I have been able to manage to live with the pain I had, at times reducing it, but never alleviating it.  Suddenly I no longer felt this pain.  It didn’t last all day, at times it was just a few hours, other times it was a while longer.  But in all my body has been through in the last year the nerve pain has been the one thing that has been my biggest obstacle.  Everything else I feel I can manage and find a way to live with, but the nerve pain was mind numbing. 

So I discussed this with my LLMD at my recent appointment.  In an attempt to not get my hopes up too high I haven’t been very vocal about this latest development.  I feel bad setting my friends and family up for disappointment when any improvement I may feel turns out to be temporary. 

But when at my appointment last week I was told the break in nerve pain was huge, I decided it’s safe to get excited about it now.  Because it does mean progress. 

And progress is what it all comes down to.  Right now current guidelines for treating Lyme disease state that 2-4 weeks of antibiotics will cure most cases of Lyme disease.  Anything you’re left with after that 2-4 week course of medicine is what you are left with for life, or else it’s purely psychological and just pain caused by daily living.  It doesn’t take a scientist, a doctor, or even someone with a triple digit IQ to figure out that doest not make sense.  In this day and time with all we can do with medicine and alternative healing, I refuse to accept being told this is not real, or that there’s nothing that can be done. 

I sit before you writing this as living proof that those guidelines are flawed.  They are not only flawed, they are causing thousands of lives to come to a screeching halt with misinformation about a disease you can fight.  365 days later I am so much better than I was.  I have such a long way to go, but the important part is I’m on the right path. 

One year ago I could barely walk, barely think, barely dress myself and get to work for a few hours a day.  My body was going downhill so rapidly I was in a panicked state at what was going on.  I slept every day after returning home from work, until I could no longer go to work at all.  I lost periods of time in my memory.  I don’t remember much of Christmas, or anything that happened around it.  The list goes on and on. 

Last week I did 2 radio interviews, attended a screening of Under Our Skin with Dr. Bock speaking, celebrated my birthday, spoke at a support group, made 2 trips to Albany and celebated Mother’s Day.  I won’t lie and say I wasn’t exhausted when the week was over, actually to the point of uncontrollable twitching and muscle pain.  But I rested and recovered and am back on the Lyme Disease Awareness horse (there really isn’t a horse involved, in case you’re about to call PETA).  A year ago I couldn’t have pulled off half of that.  I understand I can’t do that every week, because I would send myself right into relapse.  But my body is slowly learning how to work right again, after 20 or more years of it slowly declining while the Lyme bugs moved in and set up camp throughout every part of my body. 

Do not let anyone tell you about your health, it’s your health.  You have to be your own advocate, especially when faced with something like Lyme disease.  You need to be making the decisions about your care, and then find the appropriate professionals that can help you.  Nobody can tell you that you will never get better.  And they certainly can’t tell you Lyme disease is a simple cure.  There are thousands of us who are living proof of that.  While some catch the disease early and treat it appropriately and have no further problems, they are the exceptions, not the norm.  Our medical system has allowed us to think differently.  This is why Painting May Lyme Green is so important, because it is up to those of us who suffer so needlessly to get the word out about the truth behind this disease.  Everybody in my world has been affected by this disease, but more importantly none of them have been able to remain in ignorance about this disease either. 

So yes, I am getting better.  I will be back.  I may not be the same person I was a year ago, but I will be a better and improved version of him.  One that has reclaimed his life from Lyme disease.  While I know the struggles ahead are large and looming, I also know what I can pull off as an individual and am no longer afraid of the unknown.  I welcome it, and the oppoturnity to grow and become myself again as this disease is erradicated. 

Join me in celebrating one year of my treatment done and out of the way.  Join me in praying that the next year will bring even more healing.  Join me in standing up with the thousands of others this month as we Paint May Lyme Green, and tell our stories so the world can know the truth about Lyme disease.

Healing, One Lesson At A Time

by Eric Rutulante  •  March 30th, 2010  •  No Comments »  •  LymeBites Blog

My thinker appears to be broken.  Well not really broken, as much as sprained.  Maybe it’s the rain, the wind that has been howling through the Hudson Valley all day.  Maybe it’s just too late in the day for my brain to do any more thinking.  Either way what I set out to share with you all tonight has flown out the window in the last gust of wind.  For now, let’s talk about anniversaries. 

Friday was my 12 year anniversary working for the state.  It was odd I realized that the same day I was doing some stuff for disability and retirement.  I always figured if I retired after 12 years it would be because I somehow become a millionaire, not because my body has been infested with corkscrew-like bacteria for the past couple of decades rendering me almost unable to care for myself (if not physically, then financially). 

As I thought about that over the weekend I realized it was 14 years ago this week I moved to Albany.  Bright eyed and bushy tailed from 4 years in Utah and Idaho, I transferred to school up there which is what led me to working for the state.  You know the rest up until the next anniversary, which was 2 months ago when I left Albany to return to Saugerties to move in with my mom as I began IV treatment for my Lyme disease.  After 9 months of fighting this disease through oral antibiotics and other supplements it was time to move on to the big guns, and at the same time I gave up my apartment and it’s expenses to be able to continue to pay for treatment and medicine which was not being covered. 

It struck me as funny how it all came back full circle.  Starting with 14 years ago when I left Saugerties for Albany, to the career I had that kept me there until 2 months ago when I returned for reasons beyond my control (and to be quite honest beyond my ability to comprehend).  It’s more than just an Aerosmith song, full circle really does describe life pretty well. 

So I wonder what circle is being formed with all of this sickness and change going on.  A year ago my life was completely different.  I was pretty sick by that point, but I just didn’t know why.  But it was still a fast paced world where I commuted the 2 miles to work on a city bus, spent my days downtown in shirts and ties laughing with my coworkers, days spent in my cubicle working on budgets and spreadsheets. 

My life could not be any more opposite today than it was 365 days ago.  On my good days I will tell you that being sick with Lyme is really a blessing (on my bad days don’t even ask!)  Throughout the last 11 months one of the only ways to keep my sanity has been to find the good that has come out of being sick.  Some times it’s the littlest of things that I rely on to keep me going.  But as I ponder the anniversaries occurring and the circle that was created by those anniversaries…I can get a little excited finally.  Because this disease is starting a new chapter in my life.  I don’t do well with change.  Plain and simple.  But when I look at the changes in the last 14 years and the circle that just closed, I’m kind of excited to see what’s on the journey in the next circle. 

So while this all sucks royally…and when I say it sucks, I mean it.  This has been beyond anything I could have ever imagined.  But tucked within the layers of hell that I’ve endured in the past 11 months I have found quite a few things to be thankful for, several of which never would have happened without this illness.  Would I have chosen to be sick again if given the choice?  No…I could never knowingly go through that, but I can find some good things in it, and I know I will find many more as I get better and can start to get my life back. 

It helps when you can find some kind of purpose in what’s happening to you, especially when what’s happening to you is a life altering event.  There are days it’s easier to lay in bed and feel sorry for myself, but I know I feel better when I can get out of bed and find a reason to my day.  Day by day as I find reasons I can start to see the bigger reasons.  So today, while I’m frustrated at how slow my recovery feels, I am thankful for the progress I have made overall in the last 11 months.  I have come a long way in that time, and I’m grateful I’m still able to see that the grass is greener on the other side, and I’m beginning to see that soon enough I can get to the other side. 

It has recently occurred to me that perhaps my body is recovering one lesson at a time.

So This Is It?

by Eric Rutulante  •  March 26th, 2010  •  No Comments »  •  LymeBites Blog

Today has been anything but good.  It hasn’t been bad though either. 

I had a bad night of trying to sleep, and my bladder (and an annoying cat) made it hard to get any quality sleep after about 6 this morning.  At 10, after a measly 9 hours of sleep, I gave up and got up for the day.  I felt terrible.  Inside and out.  The novelty of my new “room” here in my mother’s family room has long since gone away.  I feel surrounded by boxes of stuff I have nowhere to put.  I’m not really unpacking them here or putting the contents anywhere, but it’s stuff I don’t want in storage.  In the meantime I feel like the boxes are beginning to smother me.  But that’s all cosmetic stuff, things you think laying in bed at 10am wondering what to do with your day. 

It took me about an hour and a half to get out of the house, but I managed to get out into the sun for a while before the rain was set to arrive.  Too weak to drag my laptop to the bookhouse, or to the park…I brought my pens and notebook, sat on the Hudson watching flood debris float by and did some writing.  It didn’t take long for my energy to be completely shot, and anticipating afternoon plans I headed home. 

Instead of afternoon plans I felt worse.  I didn’t take any Advil or anything today, and by 3pm I was left wondering what is happening to my liver and kidney’s when I can’t make it past 3pm without some form of pain medication.  I realized something is wrong when you don’t go any 24 hour period without something.  So what do I do?  Pain management?  To me that means staying in bed and never going anywhere.  Lyme pain is not something you can “manage”.  Maybe you can live with it, but you certainly can’t manage a life.

This morning I told my mother my stomach was unsettled, but I had just finished taking my 23 pills and supplements this morning.  “A year ago 23 pills would have been a cry for help, now it’s just breakfast.”

So I’m left wondering how to balance chronic illness with life.  I’m not one for accepting being unhappy or miserable.  I can’t find any light or happiness in just laying here day by day, and I wonder how I can possibly heal or recover without light or happiness?  But I just push myself from one day to the next just to steal moments of normalcy, anything than spend my days in a bed in my mom’s famly room. 

Without a miracle I will have no choice but to live here for at least the next year.  It’s likely to be more like 2 or 3 years, but the reality is it’s not just a visit…I will probably live here for longer than I lived in my last apartment, so that’s not going to change.  The best I can hope for is 80% of the person I was before I got sick, so the disease or sickness isn’t going to change.  What’s gotta change is my willingness to just accept it, put my head back on the pillow and go back to watching TBS reruns all day waiting for those good days every 2 to 3 weeks, when they appear. 

So on that note I need to learn to re-live my life all over again.  What I’ve put the last 36 years into is not gonna work out so well for me at this juncture, so I have to find a way to accept it without being miserable the rest of my life.  But what I can’t figure out is how to be anything BUT miserable for the rest of my life knowing this is what my life is now.  What do you do then? 

Maybe that’s a rhetorical question…maybe I need ideas from you, unfortunately my oxygen deprived brain can’t even figure that out right now. 

We’re approaching a year now that I’ve been sick, the life I lived is nothing more than a distant memory…I feel like I’m picking team members for some sort of game and all that’s left to choose from is the overweight, short, uncoordinated kid who can’t catch the ball, let alone play the game.  That kid is life with Lyme disease, and if I want to play the game I have no choice but to accept it.

So Much To Say

by Eric Rutulante  •  March 12th, 2010  •  No Comments »  •  LymeBites Blog, May is Lyme Disease Awareness Month, Uncategorized

So Much To Say happens to be one of my favorite Dave Matthews songs, incidentally. 

Beyond a great tune, it’s also what’s in my head tonight.  I feel like I took a Ritalin about 35 minutes ago, and suddenly my mind is totally awake.  The only problem is it’s still foggy, so it’s like being really awake in the dark…kinda useless.  The reason for my semi-manic mind swings is because I haven’t had a computer for the last 10 days.  Today I have it back, I also have Internet, I have my cable box…I feel like I’m finally starting to settle in to my new home, 6 weeks later.  The day we got the wireless fixed so my laptop would connect, the power cord died.  It took a local computer company 9 days to figure out I needed a new cord, which I ended up buying at Wal Mart…but I digress, this is not the platform to b*tch about my issues with local businesses. 

Today has been a horrible day, but oddly I woke up feeling pretty good this morning.  I told my Mom it was the first morning in at least 3 weeks I have woken up and not felt terrible.  I haven’t had any good days for at least 3 weeks either, they haven’t been horrible days, they’ve just been awful.  Now, try and follow that reasoning and you will understand what I mean about the awakened sense of brain fog I’m experiencing. 

I had a 9 day hiatus from the IV antibiotics thanks to the joy of modern day health care.  My health insurance (once again I will say I have one of the best health insurance plans you can have in New York state) cut off paying for the medicine after 28 days, stating there is no scientific proof that extended antibiotic therapy will provide any relief for Lyme disease.  We kind of knew that was going to happen, and that we’d be facing a $150 a day bill to continue on with the medicine and home health nurse agency.  Luckily, thanks to a nurse at my Dr’s office (big ups to Kim) we found an amazing company in Fl (Alyssa told me about them 3 months ago, but of course I forgot all about it by the time I needed the info) that quoted me $35 a day, including all the supplies I would need.  The final cost came to under $31 a day, for pre-mixed medicine that come in infusion balls that work so much better than the IV bags requiring gravity (which has never been a great friend of mine).  After grumbling for 9 days that after finally getting started and used to the infusions I had to stop, I was pleased to know everything (once again) worked out exactly as it needed to to keep on this journey towards healing.  Had we gotten things worked out earlier I would be paying a lot more for the medicine than I currently am.  (On a side note, many other Lymies are scrambling for the info of this company because they are paying so much more for their medicine, if you are interested in the info send an email to LymeBitesDotCom@yahoo.com, I will be posting the info as soon as I touch base with the company for some info an permission (pesky permission, always causing me grief). 

So I am a week into my second month of IV treatment and still hanging on.  I have to say the transition to having the PICC line and starting the IV meds, as well as moving back home and giving up my apartment was probably a bit more than my fragile Lyme ridden self was prepared to handle, but it’s been 6 weeks now and so far nobody has had to file any police reports, so I think we’re doing pretty good. 

I know many people are at the point of hoping for a miracle right now.  I keep getting questioned by people asking if I’m getting better yet.  It’s good to know I’m not the only one who is growing extremely impatient with this disease.  Sunday was my 10 month “sickerversary”.  I talk to my new “Lymie” friends who are in years 1, 2, 3 or more in their treatment and I have to remember that I’ve only gotten 10 months under my belt.  I have a long road ahead of me, so I have to keep trying to be patient day after day, no matter how long the tunnel seems before I can see any light again.  It’s tough at times to be patient, but I remember how far I’ve come in 10 months.  I think back to those first few months and how awful each and every day was.  While it’s been slow and painful (literally and figuratively), it has been progress nonetheless. 

I’m hoping the shake up in today’s pain and suffering, from the waking up feeling fine to feeling like I had come down with some horrible flu, means that something is happening with the meds I’m on now.  Unless any herx reactions I am having are very subtle, I haven’t seemed to have a real good old fashioned herx since going on the IV meds.  I’m not really complaining…just in a way wanting to get the inevitable over with.  I’ve got a few months of being of the IV ahead of me, there’s a lot of little buggers in my body that need a good butt whompin, and this is the best way to do it.  In a way I picture myself, 5 or 6 months from now feeling much better, doing my infusions from my desk at work while sipping tea and eating crumpets.  Not that I’ve ever sipped tea and eaten crumpets in my entire state career, but it sounds like something I might like to try…someone put that on my “Post-Lyme Bucket List” please.

Got a lot of exciting info coming up about May, which is Lyme Disease Awareness month.  If you’re reading this, please get involved in some way with some form of Lyme Disease awareness in your area, and if there isn’t anything then PLEASE START SOMETHING.  I would give anything to have been “aware” 2 years or 8 years ago, at any point in the last 25 years really, to have been able to have avoided the last 10 months.  What it’s done to my body, my mind, my life, my family, my friends, my HAIR, and my ability to drive and text at the same time (nobody tell Oprah, last thing I need is her all up in my kool aid making me sign the ‘No Phone Zone’ pledge. 

Stay tuned…tomorrow could get interesting.  Or it could be just another day in bed watching Will and Grace reruns, TBS afternoon reruns followed up by a round of Friends reruns (are you noticing a pattern here????)

What are you waiting for????  Go.  Now.  Find something to get involved with in May, the month of Lyme Disease Awareness!!!  (And on a side note, also the month of my birthday, as well as my one year sickerversary…I am accepting gifts for both occasions.)