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
Tags: , , , ,

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


One Response to “What does someone disabled from Chronic Lyme do all day?”

  1. Wow Kathi, that is unfreakinbelievable , i got tired reading it !!! I certainly never would think you were home just eating bon bons, but this just proved it . Dang!!! I hope yand pray you’re feeling better. love you !!!!!!!!!!


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s