personal journey with lyme disease

One Ringy Dingy, Two Ringy Dingy….. March 12, 2013

Filed under: Uncategorized — iammorethanlyme @ 8:18 am
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After four rings, it went to voice mail.  I quickly left a message and wondered if it would be returned.  I had no right to expect it to be and if it was going to be returned it could be anytime in the future.  Twenty minutes later my phone rang…………

“Hi Kath, it’s Dad.  I’m so happy to hear your voice.  I can’t talk right now as I am at work, but I had to call when I saw it was you.  Can I call later?”  “Whenever you get a chance, Dad, I’m home all the time.”  “OK, I’m so glad you called.  I love you so much. Bye”  “Love you, too, Dad, bye”

That was my first conversation with my Dad in over a year.  In fact, the last time I saw him was at my Mom’s wake in November 2011.  I wasn’t sure that he would even show up, but something told me he would be there.  I even had some old pictures to give him if he showed up as I realized that when my parents separated when I was 12, he didn’t get any photos.  My sisters and I had been going through the old albums while we spent a lot of time with Mom in her last few weeks.  There were so many pictures of his side of the family, that I felt I had to take a few along with some holiday photos from when we were young.

At my Mom’s wake it was quite busy and I was at the head of the line, even though I have an older sister, but I was basically stuck there with a chair and my walker.  I caught him out of the corner of my eye the minute he came in.  He made his way through old neighbors and friends and nervously came through the line.  My older sister, Anne, and her family have kept in touch with him so he was relieved she was right there to greet him.  The next obstacle was my younger sister, Donna, who had so much baggage from my parents that it wouldn’t fit on a jumbo jet.  My sister opened her arms wide and hugged him tight.  That’s when he started to cry.  He moved onto John, her husband, then Dave who hugged him and I was the last one before Mom.

I moved the walker out of the way and held onto him as I felt his skinny body shaking and could smell the cigarette smoke on him.  I whispered in his ear that I had something for him and would give it to him when he was leaving.  I took him to re-meet his granddaughters and meet their boyfriends.  I left him alone at the casket.  He couldn’t stay – it was too much.  So I reached in my bag and pulled out a package of pictures and handed it to him saying, “I have a lot more that you need to catch up on.”  He cried some more, I said I would call him soon and he left.

I did call him, but it was the week after Christmas 2012!  I know I didn’t have the best of years, and it’s not like I didn’t think of him.  It’s just that this is my BIGGEST flaw – I despise making phone calls (and I get that from him).  Just to add in a little more info here, before my Mom’s wake, the last time I had actually seen him was seven years ago at my nephew’s high school graduation party!  Oh, he lives 1/2 hour away from me.  I have been in this house for 14 years and he had never been in it.  So, yes, there is history, there is doing what you believe is best for your family, and there was the lifting of any old anger from these family members once my Mom passed.

My father holds no ill will that it took me so long to call.  He is just happy as a “pig in shit” that I did.  He is 74, recovering alcoholic, smokes like a fiend, has tattoos, has a pierced ear and loves the opposite sex.  He works at a home and garden store fixing machines and loves it.  He is not mad that his life did not turn out as he expected, which was to retire to St. Thomas with my stepmother (who died of cancer ?8 years ago).  He is not mad that he is tight on money after all those years preparing for his future and having the stock market crashes kill those dreams.  He is Dad, Papa Don, as happy to be telling jokes as he is to be listening to stories.

We have talked a few times and he has finally seen the inside of my house.  We went out to lunch that day and talked for over two hours.  We talked the day of the blizzard “Nemo” where he was telling me that he was going to be headed out after noon to drive around as the government officials in Massachusetts had said to be off the roads by then.  He doesn’t care for our leaders and he doesn’t like being told he can’t do something.  I owe him another phone call as the rest of February was pretty rough for me.  In fact, I am going to call him at noon today and leave a message if I have to because I know he will get back to me.

Life is too short to let the past keep you there.  If Amy hadn’t mentioned whether it was okay for her to invite Dad to her wedding, I would have put the call off.  Even though they don’t have much of a relationship, she remembers him going to her dance recitals and being at birthday parties and was being a bigger person than I had been.  Thank you, Amy.  I like having my Dad back in the picture.



With Lyme, all you can do is try March 8, 2013

Filed under: Late Stage Lyme Disease — iammorethanlyme @ 6:30 pm

With Lyme, all you can do is try.


With Lyme, all you can do is try

Filed under: Uncategorized — iammorethanlyme @ 6:28 pm
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I will blog a lot about Lyme as I have been housebound for over 7 years with Late Stage Chronic Lyme and underlying MS (which are basically the same thing once you read enough about the diseases.)  This is just about me, my Lyme and the snow the past two days.

Where I live in Massachusetts, we have been blessed with almost another two feet of snow that the weathermen did not see coming. Four to eight inches was the best estimate.  WRONG.  This storm is still hanging around 36 hours after it started.  Not blizzard conditions, no power loss, just a lot of wet, heavy snow to shovel.  How would I know that, you ask?  Well, let me tell you………..

Yesterday, Dave shoveled before he went to work at 7 am.  I am home as I have mentioned before with my ancient dog, Madge.  Madge is not shy about using the kitchen floor, in the middle of the night, to pee – lovely, I know, but she’s 15 1/2.  The rest of the time she needs to go outside.  By 10 am, Madge needed to go out.  I went to the back door and could barely push the storm door open as the snow was blowing in at the back of the house.  Madge weighs maybe 12 pounds, so as tempted as I was to toss her out into the snow, I knew I could not.  I grabbed my dusty snow boots, snow jacket, grabbed a shovel from the front steps and started digging my way out the back onto the wooden deck and Madge followed behind me waiting to get down the stairs.  Stairs are not my friend, wet wooden steps are just begging for me to fall down them.  I cautiously cleared the steps to make a passage for the dog.  There was pure joy as she relieved her full bladder and happily ran back in.  No worse for the wear, I headed to the front steps to see what I could do to get the lazy ass mailman to stop and deliver my mail.  I don’t like my stairs, no one likes the stairs to this house as they are awkwardly spaced in length, width and height and could cause an injury if you misstep.

I cleared as much as I could before I started hearing my heartbeat in my ears and could feel some rumbling in my chest when I drew a breath.  This was in less that half and hour!  In I came and as I was taking off my boots, I heard that mailman (bastard) drive right by!  Just like putting salt on a wound.  I sipped water, took deep, slow breaths and had a cool cloth for all the sweat that was now pouring off me – YEAH, DETOX.  My brain is yelling at me that I know better than to do any type of cardio work as last time I did, I ended up relapsing and am still coming back from that a year later.  When Dave came home, I played it down like it was no big deal, I didn’t do much, etc.  He worries enough.

Yep, there is more.  Today dawns with an unexpected dumping of overnight snow and Dave is out there again trying to shovel out to go to work.  He was concerned about his Dad, who lives close by, as at 85 he still goes out to shovel.  I knew Dave would drive by the house as he headed to work and sure enough his Dad was out there with a shovel.  Dave came home as the driving was lousy and he redressed in the snow clothes I had thrown in the dryer and headed over to his Dad’s house.

While he was gone, the snow continued to pile up here at a rapid rate and again the back door was blocked.  Okay, I can do this.  I will just go slowly.  I will wear gloves this time.  I will put the house phone and my cell phone in my coat pockets.  Out I go, with Madge right behind me.  This snow was heavier, throwing it over the railing was difficult.  Using my right side more as my PICC line is in my left arm was causing pain in my lower back.  I didn’t clear the steps this time, just pushed the snow down so it was like a slide.  This was fine with Madge and she was right back in the house.  Hmmmm – should I?

I decide to go back to the front steps again as I was expecting medication in the mail and the jerk didn’t stop yesterday.  I had heard the mail truck making it’s run down the opposite side of the street, so out I went.  I could only go so far on one set of steps, but the ones that run right along the front of the house, I cleared all the way down.  I am just going to go back up them when I hear the truck coming and then I see it passing by – WTF?  I hollered, “HEY, gotta any mail for me?”  He stopped, backed up and said that they are not supposed to stop if the stairs aren’t cleared.  I said, “I’m not supposed to shovel because I am disabled, but I am looking for medication that was supposed to come in the mail yesterday.”  He checks and lo and behold, there is my medication.  Did I say he was a lazy ass.  I grab my mail and medication and head into the house feeling successful.  Now inside, I am dizzy, wheezing and my heart is pounding.  I repeated yesterday’s process to calm down.  After a good five minutes, I check my heart rate and it’s 148 – that’s like an aerobics class.  Great, Kath, just great.  Am I trying to set myself back?  Absolutely not!  I am trying to do what I thought I needed to do for me.  So I accomplished that as I got my medication I needed, but now my back hurts and my forearms are tight.  I joke that at least I still have muscle somewhere, but the heating pad is calling me.  Dave comes home about 15 minutes later and says, “you are beet red – did you just come in?”.  Yes, yes I did. He worries enough.

Lyme will be with me always and I am just trying to do what needs to be done when I have to and sometimes I will pay a price for it.  Hopefully, muscle fatigue and a little pain is the worst of it this time.


TA DA March 7, 2013

Filed under: Late Stage Lyme Disease — iammorethanlyme @ 7:11 am
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Look at me, only 12 hours since the last post!  Things to be happy about already:  my dog did not pee on the kitchen floor, it’s snowing, I don’t have to shovel or go anywhere today and I love my haircut!  Just a simple gal.

I’m a little disappointed I didn’t sleep better last night as that was my last Vicoden from my root canal a few weeks ago and I had been very happy to sleep a solid six hours for the first time in YEARS.  It’s my own fault (my mind’s fault really) as my PICC line is irritated looking and that makes me nervous which makes me think that maybe something is up again with the tooth that had the root canal as this is how it started last time.  Big time infection in my mouth was the result even though I was premedicated with 2000mg of Amoxicillin, had antibiotics placed in the site of the procedure and was/am on 500mg IV Azithromax daily.  Of course, I don’t have a temperature (it’s at it’s usual 96.2), so I will just put heat on my PICC line site and keep an eye on it.

Oral spirochetes are a bitch, plain and simple.  They invade an injured site in the mouth like a dog with a new bone. The following is an excerpt from a public health site regarding just how oral spirochetes attack (I like their reference to multiply like rabbits more than a dog with a new bone – so be it):

A focal infection is a local infection that expands to incorporate the whole quadrant, then the whole side of the mouth and eventually can cross the midline to incorporate the other side. Basically, the theory says the oral cavity is able to generate particularly nasty toxins that poison the body when you have had a root canal or a tooth extracted. Most dentists still do not understand the Focal Theory; it was studied more in Europe than here. Dr. Weston Price’s great contribution was the discovery that focal infection bacteria are polymorphic, meaning they mutate and adapt and multiply like rabbits in the three miles of dentin tubules that emanate from every tooth. The bacteria become smaller and anaerobic – they can now live without oxygen. They also become more virulent, and their toxins more toxic. Root canals and old extractions are common focal infection sites. 

When you have a root canal, a dead tooth is left in the mouth. The dead tooth lacks a blood supply to its interior. Antibiotics circulating in the bloodstream have no way to penetrate this dead tissue. Over time, the material packed inside the dead tooth shrinks a bit. Now bacteria come in and morph. The tooth has both bacteria and toxins as a result of being dead for so many years and these toxins are infiltrating into the bloodstream. 

In extraction sites, the healing may not take place correctly. If the healing is incorrect, the space can fill in with fatty tissue, dead bone, improper bone, or it can fill in with infected material. All of these processes are wrong and the organ associated with that extraction site will always show this improper healing. The remedy is to clean out the socket, debride it, and remove the ligament that holds the tooth in as well as the dense bony lining of the socket. The other important factor is cleaning up the quadrant (at least) of the mouth where the extraction was performed – cleaning up all metal and any other extraction sites. This is the best way to assure proper healing from extractions. 
Toxins from focal site infections are highly virulent and they tend to go to the organ associated with the meridian upon which that tooth lies. Over time, the toxins’ assault will change the genetics of the organ. However, it has been found that upon proper extraction of a dead tooth and proper treatment of an extraction site, the organ will return to its normal genetics. Bob Jones, an engineer, recently did substantial genetic testing which demonstrated the ability of organs to right themselves.

Did you get all that?  It’s funny as I had a root canal done a few years back before I realized any of this and ended up with a super infection and the molar had to be pulled.  I was put on strong antibiotics, but a few days later I was back in as I felt bone sticking out.  Just as it states above, my jaw bone had protruded and I had the great pleasure of having that carved out.  My mother always said I had to be different.

So now I am left to wonder if I should have just had them pull this molar, too.  Am I just in for more trouble leaving a piece of a dead tooth in my mouth covered with a crown?  I guess I will find out on March 19th when I go back to have the permanent crown put on and we see how the site looks at that time.  Of course, I have a nice metal filling in the molar next to it that probably isn’t helping either, but money is always a factor even with dental insurance.  I am going to try and hold onto this tooth as I am rather attached to them and don’t want another gap in my mouth.  Wish me luck and hope you ate before you read this.  Bet you want to go brush those teeth again, don’t you?


A blog a day? March 6, 2013

Filed under: Uncategorized — iammorethanlyme @ 6:34 pm
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Wow, so much for saying it shouldn’t be hard to spend 15 minutes writing a blog each day – it’s after 6 now, I have no idea what is for dinner (and I really don’t care) and here I am.

I have started a new schedule in the morning of using a portable infrared sauna for 15 minutes every other day to detox.  Most people I know do this at night and then shower and say they sleep well.  Well, not me – I would sweat ALL night and I have enough sleep issues as it is now.  Monday, the first day I used the sauna, I did not sweat at all while I was in it.  I sweat when it reaches 65 degrees out – what is going on?  Then I showered and then I started sweating….for the next two hours.  OK, so I’m slow to the process. ( I have also added homemade smoothies to help detox as my other meal besides dinner.)  I was tempted to try it again on Tuesday, but realized that I could be making a big mistake as I am still titrating the Rifampin and herxing from that medication.  I did not need to send my body into a spiral when I only have the fabulous 15 year old Cairn terrier, Madge, to help me.

I woke up today, dry brushed my skin while the sauna was heating up, grabbed my Kindle to watch EPIC FAILS on youtube and in I went.  OM What the heck?!? I was sweating before I even turned the Kindle on!  Yes, that’s what’s supposed to happen.  Uh-oh, I forgot about my PICC line and what if that gets wet? That would mean a nurse visit and dressing change.  Luckily, just the tubular gauze that covers the dressing just got damp.  Now to the shower where I continued to sweat.  Now to get dressed…..and sweat.  Dry my hair – I don’t think so.  After about 2 hours and my IV and being on Facebook, the sweating stopped.  Then I got cold. Shivering cold. Ridiculously cold.  I went to my recliner, turned the heat on and wrapped up in a blanket AND fell asleep.  That isn’t what I wanted either, but I certainly don’t want to be doing that every other night when Dave is home and I actually have company (sorry, Madge, you just want me for treats).

Noon and I haven’t had a bunch of pills or anything to eat.  Smoothie and pills away!  I get through some paperwork and make a few phone calls and Amy shows up for the highlight of my past 6 weeks; going for a haircut.  Yep, love seeing Amy, but need that haircut, need to get out of the house and see my friend, Jen and feel better about myself.  I’m a simple girl, no need to try and cover my whites as they are well earned and look like highlights.  Now I won’t mind sweating so much as my hair won’t be sticking to my face and neck.  It’s those little things in life that mean so much to me.  It’s what makes me able to get back in that sauna come Friday and sweat the toxins out of me.  Oh, Lyme and your friends, you have picked on the wrong person!  Till tomorrow, goodnight!


Time to get back to blogging March 5, 2013

Filed under: Uncategorized — iammorethanlyme @ 8:21 am
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Hello to anyone who follows my blog and please accept my apologies for the last few months of not blogging.  I really need to spend just 15 minutes a day to write something, so this is day 1 and here I go:

I have had the great fortune to reconnect with friends that I have not seen or talked to since school days.  One of these friends, Cindy, is just the same as I remember her in her mannerisms, voice and eye contact.  She is brilliant, funny and truly listens when you talk.  I decided to start my blog with Cindy because we have been going for coffee here and there and she has been very interested in my Chronic Lyme as I have been in her agoraphobia and anxiety.  She is a consistent writer and blogger and is so very open and honest about her life and struggles which makes her very brave to me.

Cindy also complimented me one day and it stopped me in my tracks as I usually respond to compliments with sarcasm or self-deprecating remarks.  This is what Cindy said, ” You are so gracious in your illness.”  My mouth opened to make a quick retort and my mind took over and I said “Thank you, what a lovely thing to say.”  That statement comes back to me over and over and the meaning of what she said does not lessen, it grows.  Is there anything more lovely that someone could hear who struggles just to get out of the house and do something as simple as go for coffee and chat. Cindy has no problem coming over to pick me up, doesn’t mind when I have to cancel due to medication issues and understands that I’m good for 1 1/2 to 2 hours and then she brings me home.

Am I gracious in my illness?  I believe that I have always tried to be as nobody in my family or friend circle had anything to do with my contracting Lyme.  They have been there every step of the way watching me suffer during the years of bad doctors, then good doctors with medication that makes me sick as I try so hard to rid myself of as much of Lyme and it’s co-infections.  They take me to appointments, they wait with me, they speak up for me, they comfort me, they understand when I don’t want company and when I just need it quiet as my mind is making enough noise on it’s own.  My husband, Dave, my sister, Donna, and my oldest daughter, Amy are always giving their time to take me places.  They, along with my friends, also just take me out to get out of the house!  I know if I am in a bad place, I have learned to just say I am and that I don’t mean to be short with anyone, I just can’t put on an “act” at that moment.  Otherwise, I like to smile and laugh and not let this disease become who I am.  Yes, I talk about Lyme a lot and how I am feeling as Dave needs to know.  I talk about it if friends ask.  I post a lot on Facebook to Lyme groups but also on my home page as I am trying to get as much information out to the public as I can.  When I apologize for not talking, Dave says that I do not need to apologize as I am the one going through the pain that he sees etched on my face.  He says it is just hard to watch.  I believe him as I don’t know how I would be if I had to watch someone I love go through this process!

So, whether I am gracious in my illness is in the eye of the beholder, I guess.  I do know that Cindy’s comment has left an indelible imprint on my heart and I am happy to be able to recall those words when I need it.  Thank you, Cindy.