personal journey with lyme disease

Lack of memory July 19, 2012

Filed under: Uncategorized — iammorethanlyme @ 4:49 pm
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While I’m sure my three missing blogs were exemplary and witty, I still cannot remember a thing about them.  This bothers me.  Memory issues are annoying to my husband at times.  He just spent two weeks off with me and got a good taste of what life is like on a daily basis.  I don’t know how many times he said, “How can you not remember, we just talked about this yesterday.”  He tried to be calm, but I know he wanted to pull someone’s hair out!  None of these things that I forgot were going to bring an end to the world as we know it, but it does put a strain on the day.  He also likes to say, “We just had a discussion about this…” and I just look at him like a deer in the headlights.  Appropriate for a Lymie!!!

On some of my Facebook Lyme sites there is always someone talking about loss of memory or we start making jokes about it because there is nothing much we can do.  I try memory games on the computer, I TRY to remember who I had a certain conversation with so I do not repeat myself.  I feel like I need to carry a clipboard around all day and write down who called and what was said, who texted me and what I texted back, who’s thread on Facebook I joined in, which Lyme site I posted something to that I wanted an answer about an issue, and, of course, my meds and when I took them.

There’s more:  I want a mini-recorder so when I go to an appointment, I can record it so I have exact details of the visit.  I have heard that legally it’s okay as long as one of the people (that would be me) knows that they are being recorded.  I don’t think a doctor would find this amusing, though.  But really, when you are at an appointment, the doctor is firing questions at you and first you have to process what she/he is asking and then search that fabulous memory for the answer they want.  Then you probably correct yourself at least twice later on in the visit.  Days, weeks, months all meld together because they are all basically the same, at least for me.

Once I go to bed, usually by 11 pm and after a handful of pills to help me sleep, I am up within two hours needing the bathroom.  I am already in terrible pain as I try to get my feet to flatten on the floor so I can hobble to the other side of the house where our only bathroom is (not that my house is big), and then I have a drink and hobble back to bed where I change the position of the Craft-Matic so I can sleep on my stomach for a while.  Now I may get three hours of sleep before I wake up again due to pain.  So I get up to stretch out everything and change the position on the bed again and I’m back on my back with my feet elevated to try and stop the cramping.  Usually by 5 am I’ve had it and I come out to the livingroom and curl up on the recliner and turn on the massage or heat and get my last hour or two of “night time” sleep.

Rise and shine, it’s gonna be a great day.  First pills of the day followed by making coffee (yeah, I know I’m not supposed to have coffee because of the Lyme, but I’ve been treated for 4 years and told my Lyme is pretty well controlled for the time being), then I do any dishes we might have left in the sink, maybe put on a laundry and then take my coffee and check my email and go on Facebook.  Oops, today I’m writing a blog – I hope the Dow doesn’t plunge because I’ve changed my routine!

Shower, dress, more pills, by noon I’m thinking I should have had something for breakfast


Fourth try to post a blog July 17, 2012

Filed under: Uncategorized — iammorethanlyme @ 4:26 pm

I am going to make this short and sweet as I have written three prior blogs and each time I have gone to post one, I got an “INVALID REQUEST” message.  So I clicked on the help button, followed what it said to do and then when I went to post, my blog was gone.  Next time, I figured I had corrected the problem already, clicked “POST” and got the same error message.  Then we cleaned up the computer as we do every few months as it was running slow, so I again wrote a short post – SAME MESSAGE.  The funniest part is I can’t even remember what I wrote about and it was just last week – not a clue!  Is that Lyme or is it that they just weren’t worth remembering?  Well, here I go…………..


Fourth of July: pre-Lyme and post Lyme July 4, 2012

Filed under: Uncategorized — iammorethanlyme @ 8:38 am
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I signed off from last night’s blog saying Happy 4th and then got to thinking how this US holiday has changed so much for me.

Pre-Lyme and when our girls were young, the 4th was a great day.  Our fireworks were enjoyed either from a hotel room in Boston that a very good friend with 6 kids would rent so we could watch them in style.  One time she rented a suite and we stayed the night and woke up with 9 kids sleeping all around us.  It was fabulous!  My big contribution was bringing everything needed to make lots of Shirley Temples for the kids (and me) to drink.  Little umbrellas were very important for those drinks!

Many other 4ths included going to see fireworks in our hometown (and now current town) on the 3rd.  We could park at Nana and Pa’s and walk to the school field.  There was always one of the girls who couldn’t take the noise and ended up wearing these big headphones we had (I don’t know where they came from) and I now wish I had taken pictures of their little heads with those big headphones!  The next day, we were either at Grandma and Papa’s for a cookout and pool time where I got to cannonball the little kids and start the whirlpools.  The most daring thing one could do was get Grandma’s hair wet at all, so I settled for running cold pool water down her back.  Papa was a danger from outside the pool with water guns or the hose.  He got as good as he gave!  There was always too much food, but no restrictions for me on what I could eat.  Then as Papa got sick and it was too hard for my Mom (Grandma) to have it at her house, we started going to my older sister’s home.  By now we had 9 kids between me and my two sisters.  We would bring Grandma and Papa over as they loved the kids.  My sister, Anne, is a grill fiend, so there was food galore, I provided homemade goodies and Donna brought her famous pasta salads.  Anne had a great pool and a beautiful deck her husband, Larry, built and we just spread out, ate and swam.  Oh, yes, we used sunscreen 🙂  Those were the great pre-Lyme days.

Before I even knew I had Lyme, I was terribly sick for over 3 years.  The symptoms now all fall under Lyme, but no doctor would even mention it and I hadn’t thought of it as a possibility.  Anyway, during my sick years, fireworks were impossible for me to go to due to severe sensory issues – sound, visual and crowds – and every mosquito bite swelled to the size of a quarter.  But the girls and Dave still went with family.  Going to my sister’s house was just as much fun for everyone but I suffered the whole time.  I hurt just from preparing desserts, I couldn’t be out in the sun or heat for more than 15 minutes without a rash blooming or feeling faint.  I could not use the pool as my muscles would spasm and after the first time I scared everyone (including myself), that was that.  Plus the pool was in full sun!  I was wearing sunglasses full-time as my eyes had become so sensitive to light that I spent most of the time in Anne’s house which was great as there was air-conditioning.  I also felt out of place as I didn’t want everyone coming in to spend time with me when it was so nice out.  I’ve never like attention.

Sad note: during the past 7 years of my illness, Nana, Papa and Grandma have died, so Dave’s Dad (Pa) is the only one still going strong at 84 and adored by all.  It has definitely had an effect on all holidays.

Present:  Girls are grown and go with their boyfriends and others to fireworks wherever they want to see them.  they all have plans for today.  Anne and family moved to NH almost 4 years ago and their kids range in age from 18-30, so they pretty much do what they want as only the 18 year old is in NH.  Donna’s girls are 18 and 15 and they have their own plans, too.  So, Dave and I are going to spend today with Donna and John at their house and just relax in their air-conditioned home and grill if the rain lets up.  I am able to bring my tollhouse bars for a treat at least and can make them myself instead of instructing Dave!  I do have to give him so much credit for all the cooking and baking he has done over these last 8 years so that holidays would be the same.

Finally, I did make a joke and ask Dave if we were going to the fireworks last night and he said, “No way, you can’t take the noise, you can’t look up and the mosquitoes love you!” – I love this guy!  So to everyone in the US – enjoy the 4th anyway you can as I know we will be happy hanging out with my sister and her hubby!  Kath


Juicers, supplements and myofascial massage, OH MY July 3, 2012

Filed under: Uncategorized — iammorethanlyme @ 7:18 pm
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Well, here I am deciding for myself what I am going to do and see what changes I notice.  I finally have my heart palpitations under control with the help of one little pill and have an upcoming echocardiogram to check my heart to be sure there is no damage from Lyme.

I have been taking Alinia (anti-parasitic) since June and then started Propax with NT Factor to help repair my damaged cells.  There are 5 capsules in each packet and you are supposed to take two – three a day with food.  At $60 for 60 packets, I am taking them twice a day.

I bought an inexpensive juicer that doesn’t handle lemongrass, but I don’t think I care much about that.  I made my first fresh juice today out of kale, granny smith apple, strawberries and blueberries.  I made a mess due to the blueberries, but the juice was good.  It only made 12 oz. so if I am going to all the trouble of the cleanup afterwards, I am going to try and fill the 48 oz. cup it comes with and store the leftovers.

I also had my husband pick up items so I can use the blender to make breakfast smoothies as I always seem to skip breakfast.  Almond milk, non-fat yogurt, coconut water with any of the fruits and veggies should be just delicious 🙂

I am almost ready to try the gym again or plead with the physical therapist to work with me, but last night I had an hour long myofascial massage with some Reiki mixed in.  The massage therapist was aware I have Lyme and I explained about cramping and spasms and then just laid on the table and let myself go somewhere else.  That hour flew by!  Then 3 hours later the side effects kicked in with light-headedness and a headache starting at the back of my neck.  I started to feel beat up so I knew toxins were being released.  I went to bed happy and woke up needing to use my Craft-Matic control to raise the bed to sitting position so I could get out of the bed – ugh!  Still, I was happy as this meant my body was responding to the massage.  My next few massages will just be for 1/2 hour as we “peel away the onion layers” without overdoing it.

So do I think I know if what I am doing is better that taking antibiotics?  Right now it seems like it and I’m sure my stomach is happy with the decision.  I guess I will know more when I get the specialty blood work drawn in a few weeks before I see my neuro-lyme doctor.  Then when I see her I will get to have the new Bartonella test done and I am very excited about that and I am going to ask her to test me for brucellosis.

Sorry there was no humor, just an update, but it’s 8 pm here and I felt the need to post something as it’s been too long again.  I wish I was as good at remembering to blog as the bloggers I follow!  Happy 4th and let’s see what the weather brings for the day.  Kath