Archive for February, 2010

Dear Lyme Disease,

// February 10th, 2010 // 7 Comments » // LymeBites Blog

Dear Lyme disease,

I have tried, unsuccessfully, for the past 9 months to “oblige” you.  I’ve adjusted to the crap you’ve done to my body.  I can’t dance all night now.  I couldn’t dance all night before Lyme disease, but I could at least jerk and shake my body on the dance floor under the illusion that I could dance.  I now realize I can no longer go 24 hours without crying, or being filled with uncontrollable fits of rage over things like a commercial on TV.  I’ve accepted having Lyme disease is like giving someone else the remote control to your emotions, and I’ve adapted.

I’ve gotten used to taking between 20 and 50 pills and supplements a day.  I’ve gotten over the feeling of wanting to puke every time I see the tube going in the hole in my arm.  I’ve adjusted to having to do a daily IV of powerful antibiotics into my heart, the whole time trying not to gag at the thought of what was happening in my body. 

I’ve gotten used to not getting up for work every day.  Granted, this sounds like a good thing…and it would be, if I could enjoy the day instead of being in constant pain.  I’ve adjusted to feeling like my brain is turning to mush as I no longer use it for the analysis of budgets (a fancy way of describing my career, it’s really just knowing how to use Excel and schmooze cranky people who are in charge). 

I’ve adjusted to the dietary guidelines.  (I don’t necessarily follow them, but I’ve adjusted to them.)  I understand that eating wheat gives me sinus problems.  I understand sugar and Lyme don’t go together.  I’ve given up caffeine on a daily basis.  I’ve gotten used to people making fun of me for taking fish oil in my 30′s. 

I’ve gotten so used to the pain that it is now a part of my daily life.  I’ve gotten used to people not “getting” it.  Not being able to understand how bad I feel on the inside when I look okay on the outside.  I’ve accepted the people I’ve lost along the way on this journey…either because I’m always too sick to do things with them, or because they were just a negative energy drawing what little strength I had left to fight for my life. 

I’ve accepted the fact I will never be whole again.  I understand that the best I can really hope for is 80% of what I used to be.  I’ve gotten over the grief, and moved on with the knowledge that my life will be different when I get better. 

I’ve accepted the fact that all of my bank accounts are empty.  That insurance, which is there to protect me, is actually keeping me from getting better.  That in order to continue without insurance I have to give up the life I knew.  I’ve accepted the almost $20,000 in out of pocket expenses in the past 4 months…giving up vacations, new clothes, outings with friends in order to keep fighting for some form of life again.  I accept the fact that in 2 weeks when insurance drops the IV that it will cost $150 a day out of pocket, and what that is going to do to my family financially. 

I’ve accepted I might not be back to work before it’s too late for me to be able to go back to work.  I’ve accepted that from this point on nothing in my life will ever be the same.  The life I planned on will never come to be. 

I can accept all that and everything else that comes along with the Lyme disease that has plagued my body for so long.  I can accept the limitations placed on me by this disease.  I can accept the fact that maybe  I will never get any better than I am today. 

But I can’t accept the feeling of dying inside because everything on the outside appears that way.  Would it be too much to ask for just one day of relief from all the bullshit that this disease does to your body?  I don’t think so.  And I don’t think it’s inappropriate for me to want to break things because I can’t get a day of relief. 

I wish you were tangible Lyme disease so I could slap you silly, pull your hair and knee you in the groin.

This Will Have To Be Quick As I Only Got 19 Hours of Sleep Yesterday

// February 7th, 2010 // No Comments » // LymeBites Blog

Today makes 9 months since I first got sick leading to my Lyme diagnosis.  It’s hard to believe it’s been that long.  I’ve been sick 3 of the 4 seasons…I have to make it a priority to get well before summer rolls around again.  I have no intentions of being in bed for another summer!

Things are going pretty well with the Rocephin, as well as the PICC line.  A few minor complications, mostly equipment related, but I’ve figured out how to fix them when it happens now.  It’s all becoming pretty second nature.  I really expected this all to be a lot worse, and I’m certainly not complaining. 

I’ve felt somewhat better the past couple of days with my Lyme symptoms, but in exchange I’ve had some monster headaches, and a lot of air hunger.  Gasping for breath after going up 5 or 6 stairs, feeling my pulse vibrate through my entire body.  These are some of the symptoms that first led the Dr to believe I had a Babesia infection, and I have felt a lot of those symptoms come back.  Whether they just returned, or I’m just noticing them because my Lyme symptoms have let up I’m not sure, but tomorrow I have an appointment with my Lyme doctor so I will discuss it with him. 

Beyond that I’ve just been really tired, and weak.  My legs feel like jelly a lot of the time.  It’s not a pain that I feel, it’s not a feeling, but it’s something in between.  Uncomfortable, but not painful.  It’s better than horrendous nerve pain though.  And I cannot seem to keep my eyes open for more than a few hours.  I couldn’t keep them open long enough last night to actually go to bed, I woke up at 8am with the TV still on, my contacts in, on top of the covers with the porch light left on.  I keep telling myself my body is just going through a lot, and in the midst of a major round of healing so it’s requiring a lot of rest.  I have no intention of going through all this crap with IV’s and holes in my arm to NOT get better. 

Things here in Saugerties are going well.  So far my mother hasn’t tried to put me (or her) out of my misery in my sleep, so I think that means so far so good.  I’ve enjoyed being back home and seeing old friends and meeting new ones.  One thing I’ve noticed is that just about everyone I have seen since I moved here has been Italian, and I’ve seen more kids than adults in the past couple of weeks, which is fine with me.  It’s all a lot of adjusting, but having the IV going on has definitely helped make it more interesting. 

For now I am looking forward to spring, to get out and enjoy some sunshine.  I can tell the sun is getting stronger and stronger so it won’t be long now.  It won’t be long until the windows can be open at night, and I can sit outside and heal instead of in bed. 

I see the doctor tomorrow, so I’ll update everyone on what he says on how things are going.  I’m going to ask him how long he thinks before I might be able to go back to work part time.  Not that I’m all that excited to return to the land of cubicles and post it notes, but I do miss it. 

Hope everyone enjoyed the Superbowl and has a happy and healthy week ahead of them.

Empire State Lyme Disease Association February Support Group

// February 7th, 2010 // No Comments » // Support Groups

Capital Region Chapter

 

 

FEBRUARY SUPPORT GROUP MEETING

@

Guilderland Public Library

2228 Western Ave., Guilderland, NY 12084

(518) 456-2400

Wednesday, February 10, 2010

6:30 PM

 

                Guest Speaker:  Dr. Ronald Stram

                Topic:  Treating Lyme Disease:  Outwitting the Microbes

 

 

This meeting will feature a presentation by guest speaker, Dr. Ronald Stram, MD, founder of The Center for Integrative Health and Healing in Delmar.  Dr. Stram will speak on the subject of “Treating Lyme Disease: Outwitting the Microbes”.

 
Dr. Stram, the Center’s founder, has practiced medicine for over 21 years.  He is Fellowsip trained in Integrative Medicine under the direction of world-renowned leader and pioneer in the field of integrative medicine
Andrew Weil, M.D. Dr. Stram is also board certified in emergency medicine, and has been practicing in the Capital Region for over 18 years.  He is a graduate of Mt. Sinai Medical School in New York City and has been affiliated with Albany Medical Center and University of Arizona Health and Science Center
, as well as serving as Regional Medical Director of Emergency Medicine at hospitals throughout the North East.
 
The Center for Integrative Health and Healing is the area’s first practice to bring together medical doctors with licensed professionals who provide alternative therapies, such as acupuncture, naturopathic medicine, therapeutic massage, nutrition, and herbal botanical medicine.   

 
Dr. Stram will discuss the roles of Integrative therapies in the treatment of Lyme Disease.  A question and answer period will follow the presentation.
 
The meeting is free and open to the public.  People wishing to learn more about Lyme Disease are welcome to attend.  In addition to information about prevention, resource materials pertaining to the disease and it’s treatment will be available at the meeting.  For additional information, please contact
bjmeslda@yahoo.com or kameslda@yahoo.com.

Move/PICC Line/Treatment – Perfect Storm of Craziness

// February 1st, 2010 // 1 Comment » // LymeBites Blog

Well it’s been a while since my last post.  As is the way with life, things got a bit out of control over the past couple of weeks.  Adding Lyme disease to the mix makes for something beyond ‘out of control’.  Last Wednesday me and the cats left our apartment in Albany, heading 46 miles south to live with my mother in Saugerties.  Thursday afternoon I went in to St Peters to have my PICC line inserted, followed by my first dose of IV Rocephin.  Friday I met my home nurse case manager and learned how to do my own infusions.  Saturday the moving truck arrived with my stuff.  Sunday my friends wrapped things up in my apartment and now it is Monday. 

I am exhausted at this point in time.  The past few weeks have been completely enveloped in details.  Those of you with Lyme disease can attest to how cumbersome details can become when in the throws of feeling beat up by spirochetes.  We spent the last month fighting the insurance company to get the PICC line started, so between the two it feels like things have been a whirlwind. 

For now, things are positioning; not to go back to normal, but to create a new normal.  It’s been 19 years since I left home (with a brief stint back for a few months during college), so that will take some time to adjust to for everyone involved.  I could not have made it here in one piece, with my cats and my stuff if not for some truly amazing friends who spent the past couple weeks helping me out.  From packing, to moving, to listen to me rant and rave through it all they really picked up the slack on what I could not do. 

It didn’t help having the line put in during all of this, but again my amazing friends were there to make sure I didn’t have to worry about anything so I could concentrate on my health.  I got messages saying things like “we have this under control, your job is to get healthy and beat this”.  I had a reaction at the end of the procedure, starting with dizziness and nausea followed by horrendous sweating and clammy skin.  They gave me cold compresses and oxygen and assured me it would only last a few minutes.  One of the nurses held a bucket for me to throw up in in case it got to that point.  As they said within a few minutes it started to fade.  I can only imagine what I looked like leaving the procedure, being assisted by the radiologist, clothes drenched in sweat and probably white as a ghost. 

From there we went to the infusion center, where I had my first infusion.  The nurses monitored to make sure I had no reactions.  I sat with my friend as we took pictures of ourselves and made jokes and laughed with the nurse.  I do have to say that being in the infusion center helped put things in perspective.  I sat there getting my medicine for Lyme disease, something that can be deadly, but is not a death sentence.  All around me were cancer patients getting chemotherapy.  Some wearing masks, some who could not walk, others who put back on their suit and tie after and returned to work as if nothing happened.  As much as the last 9 months have sucked, my fight is nothing compared to what others face.  I am glad though that I did not have to go there every day for my infusion, I think it would become depressing to see that every day. 

So after 2 times with my health nurse, on Sunday I went solo for the first time, having no major problems (I did forget to clip the line at first so I did lose a few drops of medicine before I figured out how to stop it).  Today there seemed to be a slight equipment malfunction (a real malfunction, not like Janet Jackson’s “wardrobe malfunction” a few Superbowls past).  When it didn’t work right I started seeing blood coming out the tube, but luckily having been over this many times and talking to so many other Lymies and people who have been through this, I didn’t panic.  Mom turned the valve off and back on and it started working. 

So far no major problems with the medicine either.  I’ve had a lot of dizziness and nausea, and some pretty blinding headaches.  About 5-7 hours after the treatment I get low fever and chills, and then it passes.  Though the last 2 days each of those symptoms has let up a lot.  I’m glad to not have had any major reactions or problems thus far. 

As I said it’s time to create a new normal, and I’m slowly settling into my new home and my new life further down the Hudson.  I continue to think of the positives in all of this (though at times it’s tough), and sometimes I don’t want to think about the positives, I just want to be grumpy about it all.  Those are the times I write down what it is I am grateful for, and when I’m ready to get over myself again I can look at it and remember that each day I wake up breathing I’m one day closer to beating this.  I’m so blessed to have family and friends to help when things are bad, or with the things I can’t do myself right now.  From moving to wrapping my arm in gauze, if I can’t do it myself I know I can rely on my loved ones to help.  I know that without that support I wouldn’t be able to get the treatment I need, and fight to get my life back. 

So this is where I am today.  Closer than I was yesterday, and not quite as close as I hope to be tomorrow.  Take it day by day, and remember that tomorrow is always different than today…no matter how much today seems to drain the life out of you, there’s always the hope for tomorrow.