personal journey with lyme disease

Time goes by even when you think life has stopped December 28, 2011

Filed under: Uncategorized — iammorethanlyme @ 6:03 pm

After commenting on a relative’s blog, I realized how easy it is to lose track of time.  In my case, that is really funny.  I don’t work, I don’t drive, I only leave my house if someone is taking me somewhere – so what is my excuse for not continuing to blog on a regular basis?  I am going to give myself this one time break and say it is because it is still new to me and I’m not sure that I’ll always have anything worthwhile to write about.

We all have made it through most of the holiday season; mine done from the internet and one fun trip to a Dollar Store to get silly stocking stuffers for seven people: my three adult daughters, their significant others and my husband.  I spoiled myself by picking up body wash and triple A batteries for my camera, as I don’t usually get a stocking.  Dollar Stores and places like that are great as you get to buy Silly Putty – 2/$1; Silly String $1 a can; you can find name brand shampoos, deodorants, movie-sized boxes of candy and Suduko or Seek and Find books.  Oh yeah – thick thermal socks for – yep – $1, gloves, scarves, silly hats.  How many people can fill seven stockings for $46?  Be honest.  They are supposed to be fun and not filled with gift cards, Nano players, etc.  They always look forward to seeing what I find and everyone of them tried the silly putty.  I’m pretty sure the silly string will be for New Year’s Eve/Day.

Best gift to everyone: a snowtube – they all turned into children and started talking about where they could go.  As my girls grew up in Boston, we know plenty of great places.  But even here in town, we have a few famous hills as I used to trudge up and down them as a child myself.  Now if the powers that be will grant us with some snow!  I guess there is a certain satisfaction in their response as I always say, “stay a child on the inside as long as you can”.  There was nothing better than going to every playground I could find when the girls were young and chasing them, swinging, sliding and just forgetting about grown-up things for a while.

You would not know that I stepped away from this blog as I can save it as a draft and go back to it, but as I have Late Stage Lyme, I actually had to leave as I just started doubling one of my medication and it made me sick to my stomach.  I am hoping this will adjust in a few days.  I despise nausea!

Not to get away from the holidays, shopping from the internet offers its own bargains and its own problems.  Three gifts did not show up on time even though tracking showed they would.  I also have to plan ahead money-wise as I do not have credit cards and chronic illnesses usually leave you with a small “bounty” at the end of the month.  I don’t go crazy; I try to think of thoughtful gifts, something they wouldn’t buy themselves and try to keep the cost even.  My girls have never noticed if one got more packages than the other and except for one year and one gift, I do believe I have done well.

There is also the planning of what I will make for each family’s house that we visit.  My sister lucked out as I was feeling well and made a lasagna and a chocolate trifle for dessert.  My husband’s house got two Chocolate Angel Pies as long ago it became evident that one would not be enough.  This is the first time in six years that I have made the food without help.  That was amazing.  Maybe Mom was looking down on me and pushing me to do it!

So my Christmas started at 7am and ended when we pulled into our driveway at 8pm.  I did this with no nap, I felt engaged and not anxious, I remembered to bring my medicines with me and I was happy.  I like to say the word, but I much prefer to feel it!

Well – sorry to say that I just stepped away again.  I have to take this double-dose for three months; I hope this symptom goes away quickly.

I think this is a good place to stop.  I don’t know if the title will make sense when you read the blog – but the point is that even though I am housebound (for better choice of words), I still manage to get a lot done.  More than I have in the years past and this is the path I plan to continue on.  Be well.


VALIDATION December 15, 2011

Filed under: Late Stage Lyme Disease — iammorethanlyme @ 1:40 pm

OK, so today I am 49 and by now I expected to have run a few marathons, still be working and able to go where I want to when I want to – but we know that hasn’t happened because of Late Stage Lyme.

I named this post VALIDATION because anyone who has been chronically ill and constantly ignored by the medical community at large is aware of how important it is to have someone say, “Hey, you’re not crazy, you are truly sick and have been for a long time”.  That happened to me in February 2008 when I saw a covering internist when I thought I had a blood clot in my calf.  I showed up at his office in leg braces, with a walker and wearing sunglasses.  He asked what was wrong with me and I told him that apparently I was crazy as that is what all the specialists could come up with after multiple tests.  He told me I wasn’t crazy and that he believed he knew exactly what I had – Lyme disease.  I had the necessary blood work done, went and had the blood clot ruled out and went home.  It wasn’t long before I got a call that I indeed had Lyme, but the internist wanted me to see a LLMD (Lyme Literate Medical Doctor) in Connecticut for treatment.  That was validation #1.

My husband, Dave, and I wait over two months to get an appointment with the LLMD.  We then drive 3 1/2 hours to see him.  He spends almost two hours with us going over notes, labs, examining me and said that just from a clinical stand point I was one of the sickest patients he had seen in his 13 years of practice.  Not good news, but validation #2.  Each trip to see him cost $400 out-of-pocket as insurance doesn’t cover visits.  We also had to stay at a motel each time as 3 1/2 hours in the car caused me so much pain that I could barely get out of the car.  More money.  We ate cheap.  We saw him every 8 – 10 weeks over three years.  Then there were all the medications and lab tests which left us with co-pays and some tests not covered.  It is very difficult to treat a disease that is denied by the medical community.

Now I am jumping ahead to yesterday. (My LLMD has been on medical leave since April and I have not talked to him since June, so I was seeing my internist’s partner who has a biochemistry disease and felt comfortable seeing me while I waited to see a Lyme literate neurologist in Massachusetts.)  I started seeing her in July and had to have as many old records and tests and medications available for her to review that I was overwhelmed.  Then came retesting – another Brain MRI to compare to one in 2008, and EMG and nerve conduction test and a neuro-cognitive test done with just me and a computer in a room, plus another 14 tubes of blood.

OK – I’m almost at yesterday.  It was my follow-up to go over all the results.  It looked like it would be a waste of a visit as I had called to make sure they had received all my old records and the office finally got back to me the day before to say they had not received them.  So at 3 pm I am frantically trying to get certain items faxed in time.  To say I was beside myself would be an understatement.  I was tired of disappointment – I almost canceled.

Yesterday we headed out the door at 8 am ready to at least get the test results this doctor had done. We arrived to find out that the faxes had arrived and I felt a sense of relief as she would be able to compare prior results.  Now bear in mind that before I saw this doctor, I had seen neurologists at Tufts and Lahey Clinic for 3 years.  Here come more VALIDATIONS that I’m not even going to number.  My Lyme blood work showed SIX positive bands for lyme – the neurologist dismissed it as did his infectious disease doctor.  My Brain MRI from 2008 showed lesions, but were dismissed; my recent MRI showed that the lesions had not grown in number – meds are doing their job.  My spinal tap showed a protein enzyme that Lahey Clinic ignored and they also ignored me when I told them I actually felt better after a spinal tap (how many people say that).  It turns out that I have swelling of the roots of my nerves at the base of my neck – a type of encephalopathy and that is why the removal of fluid felt better.  Of course, they dismissed this, too.  My EMGs and nerve conduction tests showed left-sided weakness, but Lahey did not think much of it.  My neuro-cognitive testing showed significant problems in the cortical part of the brain and diminished cognitive abilities – SHOCK AND AWE!  Just spend a day with me and you will be entertained.  There were other positive parts to the visit and we ended with me agreeing to go on high-dose Doxycycline for three months along with the Mepron, Biaxin, Plaquenil and Low-Dose Naltrexone that I am already on.  I need to get vitamin B-12 shots, get my vitamin D level past a dangerously low-level even though I try to remember to take high doses, and go for IV’s of other vitamins and Glutathione (a wonderful healing supplement that reduces stress in your body).  The last things on the list are the hardest to do as I don’t drive and there are only so many people available to help out and I am tired of asking.

To think that this all started because of a misdiagnosis over 18 years ago is appalling – that was my first bout of Lyme induced arthritis.  To look back and think of the indicators that I ignored because I figured I was a busy Mom of 3, working, taking care of relatives, doing all the wife things and was just tired and sore because of life.  I’m angry that I have basically lost my 40’s to this disease, to know that I’ll never be 100% and to know that I will relapse because of the severity of my illness – you just never know when that will happen or how long it will last.  I’ve missed being a wife and the type of mother I always was: baking, sewing, driving kids around – I think I deserve it back and that is what keeps me getting out of bed every day, taking my antibiotics and going to physical therapy.  That and the support of my family and friends.  Happy Birthday to me!


I am Kathi; I am not Late Stage Lyme December 9, 2011

Filed under: Uncategorized — iammorethanlyme @ 7:22 pm

So onto the next part – where to start, symptoms, how many doctors did it take to diagnose me, what has been taken away because of this disease, how hard it is to stay positive?  Well as Lyme makes it hard to focus on any one task at hand, I think I’ll write about what a normal day/night is like for me.

Ahh, morning – time to get up for good as I have already been up two or three times as it is very hard to stay asleep for more than two or three hours due to cramping, spasms, and general body pain.  The first trick is getting up!  Sounds simple; throw your covers back and swing your legs over the bed – piece of cake.  I wish…First I have to remember that I am in bed (which is up against the wall with my walker on the side where I get out of bed).  Then I have to get my limbs to remember where they are as there is something called “disconnection” with severe lyme where I believe my legs are crossed, but they are not even touching.  It happens with the arms, too.  Okay, I’ve got my bearings, but because of a reactive arthritis that affects my abdominal wall, sternum and ribs, I can’t just sit up.  I have to roll, scrunch, push and whatever else till I get to the edge of the bed.  Then I slowly slide my feet and legs down the side of the bed till I touch the floor and reach for my walker.  Now I have some sense of balance, now I am on my way!  (Out of the bedroom)

Once I have made a journey to the bathroom and put the dog out,  it’s time for the first round of pills.  Easy enough.  Next, I cheat and make coffee as that is the one treat I allow myself on a very strict biotoxin elimination diet I have been on which only allows corn for a starch.  While enjoying my coffee, I go online to check emails and Facebook.  This is how I stay in touch with many people and have made many friends through Lyme connections and then their friends.  It’s fun to say I have friends in Prague, Sweden, Portugal and yes, even New York!  Just kidding to my New York friends.

I try and keep it to an hour online which usually stretches to two!  Now I’m behind my own schedule of taking a shower.  Another long process.  Safety bars on the tub wall, a tub bench and the walker right outside the shower.  Everything seems to take so much longer. I have to remember how to take a shower!  I’m used to sitting now and that’s okay because if I’m standing and close my eyes, I fall backwards and that’s not a good thing.  After the shower and drying off, I need to lotion any rashes I may have at any given time.  Then it’s back to my room to dress and I’ve done it before 11 o’clock!  Sounds ridiculous doesn’t it?  Well it is.  Now I need to take more medication and eat something.  How many sandwiches can you make on a corn tortilla?  How many salads can I eat?  I guess I could have some corn pasta.  Well, it’s noon now.

Now I wait to talk to my sister, Donna, if she’s working and usually at least one of my daughters.  Could be I’m making physical therapy appointments, getting record releases for my next visit with a specialist or calling to get my hair cut and, of course, letting our senile dog in and out.  She’s as bad as me!  Wow it’s 1 o’clock and I haven’t done the dishes, put on a wash, tried to write an errand list or cleaned off the endless papers that magically appear on the kitchen table.  But I’m too tired to think straight.  So I need my nap.  I try to nap in the recliner as I don’t want to go back to bed as I get confused when I wake up and am not sure what time of day it is or if it is nighttime.  The recliner saves me that confusion.  I put on some music and fall asleep for 1-2 hours.  I let my body decide how much rest it needs.

Dave doesn’t get home from work till 3:45 pm so I try to get a whole bunch of little things done when I wake up so I feel like I haven’t wasted a whole day.  There is no pressure from Dave – I do it to myself – always have and always will.  If I have physical therapy, it’s back out the door for Dave as I don’t drive.  He drops me off at 4 and picks me up at 5.  Now I feel like I’ve almost made it through another day.  Just dinner and pills, then time with Dave watching TV or talking.  Dinner can be a hassle as I can read a box of instant rice four times just to make it. TV time –  I love sports luckily as I don’t have to think during them.  We watch movies at home as I can’t handle the extreme noise surrounding me in a theater.  The crowds don’t help either.  There are so many sensory issues.  I actually wear sunglasses 24/7 due to light sensitivity, so my guess is that 3-D movies would be a nightmare!

Occasionally we venture out to eat, which is a nice change of pace and there is always a salad or fish dinner I can eat.  But that’s usually enough of an outing and back home we go.  We might work on a crossword together as he knows I always loved doing them.  Sometimes he falls asleep on the couch which is to be expected with all he does for everyone – not just me.  Unfortunately the couch has also become his bed as I move too much and moan or talk in my sleep.  He knows there are nights where sheets hurt my body, so he doesn’t want to cause me any pain, but he also needs to sleep as he is the one working.  So it’s a very exciting life we lead!  I try to make it till 11 pm, put the dog out one more time and take my last set of pills for the day.  Now it’s off to bed where I hope to sleep and wake up to start the fun all over again!


I am Kathi; I am not Late Stage Lyme December 7, 2011

Filed under: Uncategorized — iammorethanlyme @ 6:48 pm

I have always been thankful for everything I have in life including 29 years of marriage to Dave, 3 beautiful daughters, 2 sisters and their husbands and children, cousins and many friends.  What I am not thankful for is Late Stage Lyme disease.  I do not understand what lessons I am learning from the chronic suffering, the endless medications, the loss of my ability to work or drive 5 years ago, having to go on disability and still having trouble making ends meet.  I have never waivered in my faith and do believe that there is a reason for everything we go through in life.  I just never imagined this would be an all-encompassing disease involving the help of so many people just to get through the day.

I have learned that I am not indispensable; people can feed themselves, do their own laundry, food shop, etc.  That was important.  I know that I have had to learn to live my life differently and make choices that I don’t always want to, but have to for my own health.  It is very hard to start to withdraw socially as lyme causes excess anxiety and panic, but also it is very tiring to go to parties and gatherings with a lot of people where you need to put on your “face” and try to act better than you feel.  I am not one to want to spend a lot of time talking about how I am feeling.  That has caused problems with family and friends as they cannot read my mind.  Friends love to say, “But you look so good”, and I know they mean well and do not have it in me to tell them that they are only seeing what I want them to see.  My husband has learned a whole different meaning of patience as he has to stay calm while he tries to decipher stories that I start in the middle, why I have trouble writing a grocery list, why I can’t just answer a simple question.  Who wouldn’t be frustrated – I know I am!

I thought I was going along with life as I should: working in Pediatrics for 19 years and loving almost everyday; taking care of elderly relatives as it became necessary and being a good Mom and wife.  I thought I had learned a lot about empathy and have always been humble.  My best quality if you asked me was my humor – to make people laugh makes me happy.  Sometimes my sarcasm was a little over the top, but it hit the mark.  I still have that ability and even try to make the doctors laugh.

As this is my first blog, I’m trying to think of how I will go forward.  Should I try to educate, tell my story or maybe do both.  If anyone sees this and has any ideas they would be appreciated.