personal journey with lyme disease

What does someone disabled from Chronic Lyme do all day? May 31, 2012

Filed under: Uncategorized — iammorethanlyme @ 7:50 pm
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Yep, 2 blogs in 2 days.  But I was thinking after how “BLAH” I was yesterday after a long ride and visit with my lyme-neurologist the day before, a lot of people probably think, “What do you do the rest of the time?  Watch TV, live on Facebook, talk on the phone?”  So I thought I would tell you what I did today.

As usual I am awake at 4 am for no known reason and try and stay in bed till 5 at least.  Then I’m up trying to be quiet before my husband, Dave, has to get up for work.  I take my morning meds and then go on the computer to go through emails, research symptoms, then to Facebook to check in on friends and maybe annoy a few people.  I do this while I use my SunLamp for 1/2 hour to help adjust my sleep cycle.  Seems to be working to well.  Bye, Dave, have a wonderful day, and I make some coffee (a no-no, but I can only have so many things taken away from me), and into the shower.   Dressed, hair dried, dog out, dishes done, I sat down with my cup of coffee and started on the list of appointments I needed to make and emails I needed to send from my visit with my specialist on Tuesday.

1)  Physical Therapy consult set up for Wednesday, June 6th, at 5pm, with the same group I used last time.  Remember that I do not drive and have to make my appointments based on other people’s availability.

2)  Email my daughter to see what her Wednesdays look like for the next month or so as I need her help.

3)  Get a reply email and now I can keep on making appointments.  First was to make one the same time as she did with the dentist on June 13th.

4)  Find one of my old prescription bottles of Alinia (used to treat parasites) that had helped before and the specialist thought I should have my internist prescribe that along with the Bicillin injections for 2 1/2 – 3 months.

5)  Email the internist that has been taking the place of my LLMD, who is on medical leave for a year now, and give him the briefest description of my visit and request a prescription for the Alinia be called in.  I provided the dosage, number of times a day and my pharmacy with phone number and request for 2 refills.  I “cc” my primary care to keep him in the loop. 

6)  Email my primary care to ask who he would recommend in his practice for gyn visit as I have a adnexal cyst and the person I was going to see in October has left the practice.  It’s also been over 4 years since I’ve had a gyn visit as all the other visits to all the other doctors made it one more thing I didn’t want to have to plan.  But I really didn’t know it had been that long.

7)  Get an automated reply email from internist that he is out of the office for the week, which would explain why I never got results on all the thyroid testing I had done and also why my specialist did not get the fax I requested be sent with all results including abnormal EKG.  What bothers me about that is his assistant could have easily called me back and said the reports had not been “signed off” on so she could not fax them.  But apparently she could not be bothered and I had my specialist’s staff going through all their paperwork for nothing.

      I am under the assumption that even though I “cc’d” my primary care, I will have to wait for my internist to come back for this prescription to be taken care of so I am glad that I left a voice mail with the internist’s assistant so she hopefully will know that it need his attention.

8)  Talk to my sister for about 1/2 an hour as she is always checking on me.  I like to think I check on her and my older sister, too.  But my younger sister lives close by and sees me at least once a week and can tell by my voice on the phone or how I look when she visits how I am doing no matter how I try to hide it.

9)  Hungry – what wonderful bland thing will I have for brunch as I already missed breakfast time.  Corn pasta sounds about right for today.  So I take a break and watch some of the French Open while I eat.  I must have been a good girl as I got to see Nadal play!

10)  I called my cardiologist (again per my lyme-neurologist) and am actually relieved to make an appointment.  It has been 3 years since he first diagnosed a minor issue due to lyme.  I have more concerns now as I continually have a rapid heart rate, EKGs are still abnormal and my mother and her mother died too young of congenital heart failure.  So, I will see him on Thursday, June 14th and my sister, Donna, will take me.

11)  I left my second phone message with Dr. Hubbuch, an LLMD in Watertown, MA who I was referred to when the doctor my original LLMD  had recommended had already closed his practice to new patients.  It is important that I get a new Lyme doctor as it is not fair to keep expecting my internist to play the role.  He is doing a great job, but lyme, it’s co-infections, the parasites, etc. requires a lot of research and time.  He already has a full patient load and took me on for an “interim” period.  I think I’ve overused that time!

12)  Looked up information on Tick Box Technology Corp. that supplies boxes for your yard that attract rodents.  The rodents go through the box and a type of brush applies a coat of low-level insecticide that kills ticks but is harmless to mice, squirrels, cats, dogs, etc.  The boxes are childproof.  I look up the company in Massachusetts that provides these and sent an email request to set up a free consultation/estimate and asked for a few dates to choose from and the cost of a box as 1/4 acre could need 10!  But at this point, what is the price of piece of mind.  I haven’t been in my backyard unless my dog has tangled her leash around something and no one else is here to set her free.

Oh, man where does the time go?  I still wanted to call a lab that I believe has incorrectly sent me to collections for blood tests that my insurance or Medicare should have covered.  I also need to call another eye doctor at New England Eye Institute who believes he will be able to tell with in 6 weeks whether my inability to track correctly can be corrected.  I love just knowing there is a time frame there – unlike this wretched disease.

Wait – I forgot – I paid my bills online this morning!  Phew I didn’t want you to think that I just lounged around all day.  what did you do today?  Well, I sure hope you were paid for it!  Later….Kath


Just holding in the tears today May 30, 2012

Filed under: Uncategorized — iammorethanlyme @ 5:50 pm
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Hi to anyone out there reading my blog.  I really despise these days when I can’t get away from myself!  May for the most part was terrible health wise.  Mother’s Day and one of my daughter’s college graduation and another one’s birthday and dinner out with a sister and my two cousins were the highlights.  Not to say that I had a worse month than anyone else out there with a chronic illness, but I spent over two weeks fighting some unknown illness causing fevers, SEVERE abdominal pain, nausea, vomiting, rashes and pure misery.  I usually do anything NOT to go to a doctor unless it’s scheduled and the ER.  After 24 hours of not being able to stand upright, I thought I should see my internist.  I saw a covering doctor who was very concerned by his exam – rapid heart rate, blood pressure of 122/82 – I run low (usually 106/64) with a rapid pulse – and his exam of my abdomen actually caused me to grab at his hands and my whole body was shaking.  So I was sent over to the hospital for an emergency abdominal CAT scan to be sure there was no blockage or rupture.  If I did not end up in surgery, the doctor then wanted me to go to the ER for pain management.  Well, nothing emergent and I was not going to the ER, so home we went.  That was on a Monday.  Tuesday, the same doctor I had seen called twice to check on me and tell me that he still did not have the hard copy of the CAT scan even after repeated calls.  He was out on Wednesday and said he would fill in my doctor.  I called repeatedly – okay, twice – Wednesday and did not hear back from my doctor which is extremely unusual.  On Thursday I call and get immediately connected to him.  Funny thing is he tried me from his cell phone multiple times and for ONCE my Do Not Call Registry blocked that call !!!  I told him I was still miserable, not sleeping, waking vomiting bile, vomiting at random times, still with fever (which I never get a fever and especially not for 5 days).  He insisted I come in to the office for IV fluids, blood work and an exam.  This meant I had to call my husband again and have him leave work as I am unable to drive.  Blood work, blood pressure checks, 2 IV’s and an exam of my abdomen showed my symptoms unchanged.  We decided to stop all my antibiotics for at least a week to see if my gut was just overdone.  Home again, home again.  Already had a visit schedule for the next Wednesday (May 16th), so that was perfect.  Fevers and nausea continued but pain did start to lessen.  Add in new symptom  – thyroid pain – it actually hurt to touch the outside of my throat.  OK stay calm, just because my mother had a huge goiter removed from her thyroid when she was thirty, I already had been seen for multi-nodular small goiters.  Now on an interesting note I had made a follow-up with my endocrinologist but she cannot see me until September!  So at my follow-up on May 16th, I had more extensive blood work done for many thyroid tests and have yet to hear the results.  Yes, I called and yes, I called again to get them faxed to my lyme literate neurologist for my visit yesterday.  No, they did not have them when I showed up for my appointment, nor did they get my abnormal EKG.  Before I get to yesterday’s appointment let me just finish with my last follow-up where my doctor once again did an exam which showed continued pain and it was ten times worse when he asked me to lift my legs (no small feat with tremors).  Now he believes as do I that I have myopathy (muscle disease).  This causes weakness, inflammation, spasms and in severe instances paralysis.  There are varying treatments from physical therapy (which I start again next week), bracing (had leg braces – not going back to that), pain management (icing, heat or OTC medicines.  Well, that now explains how I could possible gain 20 pounds during the course of this illness where I spent more time in the bathroom than the dinner table, drank water or lemon water to the point I had to stop the lemon water due to mouth sores.  I knew I looked puffy which scares me for another reason – my mother and her mother died in their 70’s from congenital heart disease.  My mother had half the heart function of a normal person since she was 60 if not younger.  But – she smoked, she drank, she was obese.  I always exercised, never smoked or drank.  But all these abnormal EKGs are now sitting in the back of my mind along with my rapid heart rate and palpitations.

Oh my, I am tired now and this wasn’t even the reason for my weepy feelings today.  This is due to lack of sleep and my long visit with my lyme-neurologist yesterday.  I have to stop for now.  Thanks for letting me spill part one of me feeling sorry for myself – something I do not allow often at all.  xoxo to all, Kath


Quote for everyday: COURA… May 25, 2012

Filed under: Uncategorized — iammorethanlyme @ 6:53 am

Quote for everyday: COURAGE doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, “I will try again tomorrow.” I choose to live by this simple saying my sister gave me. It is easy to remember – make it a mantra when life seems too much. Kath


Way too long between posts!

Filed under: Uncategorized — iammorethanlyme @ 6:32 am

Hi to anyone who might find themselves reading my blog.  I started out pretty strong and then stopped.  I have been enjoying other peoples’ blogs and respond as I feel necessary.

January and February were great months for me this year as I was finally walking on my own after 6 months of intense, but thoughtful, physical therapy and great determination from me to get rid of my walker, crutches and cane.  I “graduated” and moved on to their gym facility where I even treated myself to a trainer once a week who gave me 6 visits for the price of 4 as he loved my perseverance. After two months of training and going one or two days on my own, I began to feel the weakness set in.  I tried to ignore it, but I couldn’t use the arm machines as my left arm would start to tremor as I tried to put the weights across my chest (these were machines).  My legs started to let me down, too, and I felt light-headed.  Even using the 3-5 pound hand weights were causing great fatigue.  My balance during certain stretches was funny but also embarrassing.  I was disheartened.  I had made so many friends that had seen me using the walker in the gym and now on my own two feet.  I had to stop when I couldn’t warm up by walking the track as my left foot drop kicked back in along with the endless thigh and calf cramps.

What had changed?  My meds were the same, my diet was the same – grain free except for corn (the Shoemaker biotoxin elimination diet) and yet here I was going backwards.  If this is a relapse, I feel a little gypped as I spent over 8 years suffering to have barely two months of feeling somewhat normal.  The improvement did not mean that I could now go to stores, food shop, buy gifts, go to movies as that was still sensory overload.  We found this out most recently last Saturday when I wanted to hit the Christmas Tree shop near me to get some fun things for my garden and load up of gift bags, cards and tissue paper as there are a lot of graduations and birthdays coming up.  We were almost done, Dave with the carriage, me with my walker when the color drained from me and I almost went down.  There was just too much stuff surrounding the register that I was panicking from the displays, looking for a register and having people cut me off.  Dave to the rescue, moved me near the exit and went through the register line.  He did not express anything but concern and understanding.  He allowed me the chance to do something – one store – even though he knew the chances of my senses being overwhelmed were very possible.

This is all for this blog as my next one will be about the hell I’ve been through the past three weeks with illness, doctors visits and no concrete answer.

Until then, I hope everyone has a beautiful Memorial Day and remembers the real reason for the holiday (and that is not for sale prices).  I have some flags to stick in my flower garden out front and a large flag I display below my bay window.  Of course, my sister Donna is coming over for a visit, so I will actually ask her to do it. 

Please know that I continue to get out of bed everyday, shower, dress and try and get laundry or bills done.  I have not in anyway given up trying!  Love to all. Kath