personal journey with lyme disease

Metamorphosis January 28, 2012

Filed under: Uncategorized — iammorethanlyme @ 1:51 pm

I don’t know what brought this to the forefront of my mind, but I decided that having late stage lyme disease is comparable to the metamorphosis of a caterpillar to a butterfly.  However that caterpillar goes through the larvae stage is the same as the way we get infected without knowing and as the caterpillar grows with all its legs, lyme grows and attaches itself to our bodies wherever it pleases.

I’ve decided that each caterpillar leg represents a test that we have had done while trying to determine what is wrong with us and then for all the follow-up tests; MRIs, EMGs, EKGs, quarts of blood, urine, saliva all to make the determination that finally someone believes we are truly sick with lyme.

When the caterpillar begins its cocoon phase can simply be the time that we are treated with endless antibiotics, IVs, PICC lines, ports, detox diets and baths, herbal remedies and when we least want to be seen or have to participate, so we are wrapped up tight and firmly holding strong to the belief that we are going to get better.

Then the cocoon begins to change and loosen and we battle to rise above all the tests, medications, therapies and the non-believers to shed our walkers, canes, dependency on everyone and emerge as a new being: a butterfly!  Slow to work our way out of the cocoon and then to take flight, knowing that the whole time in the cocoon was a work in progress.  It was not a period of rest; it took immense strength to change completely from that caterpillar to a beautiful butterfly free to fly and experience life.

Maybe it would be easier to stay in the cocoon where it is safe and you feel protected.  Unfortunately there are times that the transformation doesn’t take place and death occurs.  It’s very sad to think that the caterpillar struggled so hard to improve and change and either gave in or didn’t have the strength to finish the monumental task placed in front of him.

I believe I am coming out of my cocoon.  I feel very confused and anxious.  I can’t sleep.  I am capable of so much more than I was when I was finally diagnosed with lyme.  My doctors that believed and my family saved my life; they gave me the will to live and fight with every part of my being.  I cook, I go to the gym to work on my balance and muscle memory without any walking aids.  I am still on too many medications to list, but I know it is a necessity.

Honestly I wanted to give up many times.  That cocoon was so nice.  Everyone was surviving fine without me and I was just a burden otherwise as I needed help with everything.  My younger sister could hear it in my voice and was over or stayed on the phone till I finally admitted where my mind was and how tired I was of being dependent.  My husband and daughters never complained and picked up the slack.

I am becoming that butterfly – I can feel it. The thought of being free of the confines of my house is beautiful.  I don’t know how far I will get on my first “flight”, but I now believe I can do it as I have so many people pulling for me and I have always been a fighter.  I may have to rest a lot at the beginning of my new journey and I am pretty sure I will have setbacks.  But I can’t let that ever stop me from trying to get my life back.

This is the one life I get to make the most of and I am not going to miss any more of it!  To all my fellow “lymies” please stay strong – you are more loved and wanted than you can imagine.


Visualization needed for this post – humor January 20, 2012

Filed under: Uncategorized — iammorethanlyme @ 9:20 am

I look for every chance to find humor in life; even at my own expense.  This will be short, but hopefully entertaining.  For the past few weeks, I have been working out at the gym since I graduated physical therapy.  I have a trainer one day and the other days I do the work on my own.  These are the nights I sleep really well.  Yesterday I worked myself a little harder as I like to test myself, made it to 11pm and went to bed.  I have a Craftmatic bed which is fabulous for me so I can be comfortable and get help if I need it getting out of bed.

I put my Bob Seger CD on and my fan (always need air) and climbed under the blankets lying on my stomach and passed out.  I woke up a few hours later and realized my back was sore so, with the agility of a water buffalo, I found the remote and adjusted the bed so my head was raised as were my legs – making me a comfortable “V”.  Beautiful; back to sleep in no time.  Somehow, at some point, I managed to turn over onto my stomach.  At first I was just stuck and thought I must be dreaming.  Then I started wriggling and ended up on my side like a “U” and thought, “What the heck is going on?”  I moved some more and ended up inverted – now I was awake and aware of what I had done and that I really needed to go to the bathroom.  Oh – do you think I could reach the remote now?????  I used all my Jedi tricks to no avail, thought about calling out to Dave – but I hate to bug him, so I somehow snaked my way over to the remote and ta-da freedom was in reach!  Only, I had it upside down and the first button I pressed was a preset for another position – there really should be a camera on me at all times!

Well, as I am writing this, you know that I finally got out of the contraption, into my slippers and shuffled to the bathroom as quick as I could.  I went back to bed and had a little talk with it about understanding my issues and though it may think it’s funny, I have enough trouble with everyday life and it better not let that happen again.  Needless to say, I left the bed flat and tried to get back to sleep listening to Natalie Merchant’s Tigerlily.  Now to decide if I should consider this episode the end of yesterday or worry that it’s the beginning of today!

Thanks for reading and do not operate machinery unless fully awake!  Happy Weekend! Kathi


Journal Entry from 3/23/09 January 11, 2012

Filed under: Uncategorized — iammorethanlyme @ 1:26 pm

This is verbatim from a journal I was keeping to try and track my meds, questions for doctor’s appt., etc. and apparently this day I was more in the mood to question the use of journaling as writing was difficult to begin with – let’s hope I can read what I wrote:

Journal can be their own worst enemies if you allow it.  I’m supposed to track how I feel physically, emotionally, etc.  It’s so hard to due to changes in meds, changes insleep, stopping meds I’ve been on for a long time; Buspar and Trazadone.  My periods are all over the place.

I try and do what the docs tell me – be kind to yourself, let yourself heal, it’s OK to be angry.  Lately, I just feel empty.  I believe I had a Herx to the Biaxin I started 2/23/09.  It lasted the whole 2nd week of meds – hot, cold, headaches, pain.  But now I’m on week 4 of Biaxin and Mepron and I still can’t explain how lousy I feel.  Dave says it’s the meds kicking the Lyme – I hope so because I’m tired of being “here” but not in the moment.  Maybe if the tears would come more easily there would be an outlet.  Maybe my body is just at war with itself right now, but even though I “look” better to everyone I am hurting so badly!  It’s been 4 years!  Meg’s entire high school years.  Maybe if I’s had the strength to push her harder she’d be at her potential.  Amy’s been driving Meg and Katey around as neither has their license – Katey doesn’t want one – Meg just doesn’t want to go through the effort.

The Good News is that it’s been almost a year since Dr. Levitan discovered the Lyme and in May it will be a year since my first visit to Dr. Phillips {LLMD}.  He said probably 18 months of treatment but I’ve been pushing him so part of feeling this lousy is my own doing.

Everyone has been so understanding and helpful and I HATE it!  Dave is always in the car driving me to some appt.  He never complains and just seems relieved to finally know what I have and that I will get better.  Of course, I worry that he is not taking care of himself and he’ll have a heart attack as soon as I’m better.  And then I wonder what does better mean for me: 70%, 80%, 100%, driving, working, relief of all the neuro and physical symptoms and pain?

I know that I have Donna to hang with every Friday and I know that I have plenty of friends that would love to visit, but I’m not up for it – it takes way more effort than anyone realizes.  Donna’s safe as are Dave and the girls though Katey, who has been away at school, seems to “get it” more than Amy and Meg, but Katey hasn’t seen what they’ve seen over the past few years!

That was the end of that entry.  It is now January 11, 2012 – almost 3 years later and I am on more meds now – so I guess I wasn’t one of those 18 month patients.  Dr. Phillips did say I was one of the sickest patients he had seen in his 13 years of treating Lyme.  He also told me 100% was not realistic as Late Stage Lyme patients have relapses and the process of treating all the possible co-infections takes a long time.  He is on leave right now and I miss him terribly, but I was referred to a neurologist who specializes in Lyme only an hour from here and she has been wonderful.  I will end by saying I believe I might be between 75-80% improved as my walker is now a thing of the past and I hope it stays that way.  I’ll keep fighting everyday as the thought of going for a run one day would be a dream come true!


No New Year Resolutions, but plenty of hope January 3, 2012

Filed under: Uncategorized — iammorethanlyme @ 3:51 pm

I know I’m still not good at blogging as that would mean that I would have to read all the categories, settings, tools, appearance, etc. and that is one of my problems.  Whether I just can’t be bothered or I feel it would be to time-consuming, I can’t honestly say.  I know I have cognitive issues and I know I get frustrated when I read something and it makes absolutely no sense to me.  Then I read it out loud to see if that makes a difference – NOPE!  Then I try it and if I do manage to complete the task it takes ten times longer than it should.  I learned this over a year ago when my daughter set me up on Facebook so I could stay in touch with friends.  First challenge was when I thought I was going to be able to change my profile picture with ease!  I think MAN created fire more easily.  I scanned, I downloaded, I put in a folder, I went to Facebook Profile page and chose BROWSE to find my picture.  Well it wasn’t in the picture folder, it wasn’t in the document folder, I searched by name of picture and finally after half an hour, I found it under RECENT documents.  Then, with pure joy, I clicked on it and went to Facebook to see the result – nothing. Hmmmmm.  I hit browse again, I had the picture, I knew I could figure this out.  Stared at the screen for a few minutes and decided to click on the jpeg file – surely that was the answer.  Back to Facebook-OMG-it wasn’t there.  I must have called one of my girls by this time and was told to just click on the picture.  “I did”, I said.  Then they calmly said, “try double-clicking to open the file”.  Pure magic happened as my picture moved to the profile section of Facebook.  I thank them so much for never laughing at me except in fun.  There wasn’t even a snicker.  I thanked whichever fabulous daughter that was for her help and after a mere hour I had done something that now takes me a minute or two.  It wasn’t simple the next time I tried either, or the time after that, but finally it sunk in to “open” the file; or “double-click” and just like that I had control.  Are you picturing this, are you wondering what my IQ is, are you laughing?  I hope you are laughing because this is just one example of one thing in my day.  I admit I was mad I couldn’t do it without calling in help.  I wasn’t swearing, banging my head or anything like that – I was more or less assuming that the computer had no idea what it was doing!  Well, I have conceded that I was wrong.  But I have learned.  Tomorrow I will learn something else that used to be habit like turning off lights instead of turning them on!  (I’m starting to blame the dog, but I don’t think anyone here is buying it).

I can add that I officially graduated from physical therapy Thursday, December 29, 2011 – six months after I started showing up twice a week with my very cool walker and sunglasses to get my frozen shoulders fixed.  These fabulous therapists didn’t stop there, they got me stretching, moving, using weight machines at low weights and as happy for me with each step of progress as I was.  When I showed up on my 49th birthday, I was wearing a t-shirt that said SASSY and I was using forearms crutches – the therapists looked twice to make sure it was me, but I’m kind of hard to mistake for anyone.  Now two weeks later at my last visit, I went to the second floor where they have a small track.  I was going to see if I could make it around without wearing myself out.  I handed my crutches to Ben and assured him I could do this.  He stayed right by my side as I walk not once or twice, but four times around that track (1/4 mile) unaided!  So my gait isn’t pretty, but I remembered to put my heel down first so I wouldn’t catch my toe as my left side is weaker than my right.  I know I had tears in my eyes and I’m pretty sure Ben’s were a little shinier than usual.  They have every right to be as proud of me as I am!  Ben and Larry worked so hard and worked together to make a plan most beneficial to me.  It was with very mixed emotions that I took my “graduation” t-shirt from them, hugged the whole group and walked out — right to the front desk of the gym to sign up so I can keep moving.  HOPE is a beautiful thing!  Peace and love, Kathi