Wednesday, June 30, 2010

She's 3 for 3

In the history of my life, I have NEVER had someone get me on the first stick twice in a row for IV. That is ... until now.

She is 2 for 2 on IV's and prior to the 2 IV's she got my last blood work with one stick as well.

She's 3 for 3 and I tell you what .. she is awesome. She is patient and she listens and she is patient and she waits for the vein to come to her. I will say that last time it pinched just a bit and this time it hurt. I will have a bruise this time, but I got the infusion on only one stick so I'm thrilled. I think I need to bring her a special treat on Wednesday when I go in for my 3rd treatment. Anyone have any ideas?

As I was walking by my doctor today, I told him she deserves an award. I'm telling you. In all of my life, I have never had someone as competent (aka patient) in IV placement.

Tuesday, June 29, 2010

Yah GPS Support

I won't go into all the details of the Garmin Support, but I will say that it took four hours from the time I dialed the number until the problem was fixed.

Several files on the gps were corrupted. So they had to reinstall those files and reinstall the maps. My "Base" maps were there, but the detailed maps were completely missing. I spent probably 2 1/2 hours of the 4 hours waiting on hold. The other time was spent with 3 different support people. The last one was a genius.

Anyways, I'm thrilled it's back up and running properly. I can go to places again!

Monday, June 28, 2010

Raw(e) Summertime

The rules are simple. Post a photo straight from your camera. No editing. Quite easy for me. I never edit any of my shots. They are all straight from camera. This week's contest is about summer time. There is nothing that reminds me more of summer than Bicycles. It makes me remember being all hot and sweaty. Who remembers banana seats and those plastic things that went on the spokes?

Well there were no banana seats or plastic things on spokes, but these two beauts were at Carolina Beach. Almost wanted to get on one and take a spin around the Board Walk. Notice I said, "Almost."

Check out Sailor & Company's blog for the Raw(e) Summer Time photo contest.

Sunday, June 27, 2010

Dance Review

Two of my favorite dancers were in the bottom three. My top four dancers were Robert, Ashley, Christina and Lauren. So when Robert & Christina were in the bottom three it really made me a bit upset. I was a tad concerned that they would send Robert home because the boys outnumber the girls. I was hoping once I found the bottom three that Melinda would go home, but maybe she'll surprise me next week. It's been known to happen.

I paid particular attention this time to the lighting, camera movement and music. I also watched each dance with the mute button on. If you have never tried this with the show, I must admit it was an interesting way to watch. It really was a new way to see each dancer's movement. An example of this was when I watched Jose & Kathryn's Bollywood number. Without the music, I knew right away how poorly it was performed. However when music was added, it made me love Jose's dance more because of his glowing personality. It showed through even without the music, but with the music his personality exploded out of the television for me.

I don't really have the time to put my thoughts out there this week, but I wanted to share top two dances and bottom two as well.

Robert & Anya took top spot in my mind. I just loved everything about this dance. I honestly don't get why Robert was in the bottom three, but he was and fortunately for me the judges kept him. I think the reason why I like him is because he wasn't pimped up by the judges prior to the competition starting. The other favorite this week was Ashley & Mark. I just loved this dance. Again, I think it's because Ashley wasn't featured as much before the competition began.

Now my two least favorite dances were actually a bit of a shock to me. Last week I loved Alex & Allison. Alex this week failed to give me the same wow factor and I partly wonder if it's because I was so blown away by his performance that I was let down this week. My other least favorite dance was performed by Billy & Comfort. I'm beginning to think that Billy has really bad luck. Two way out of his style dances in a row first two weeks out of the gate.

Oh last year we had Mary & her quirky statements, I think this year I'm paying attention to Mia's one word question: Yeah? Yes? No?. Once I heard it twice during one review I heard it several times throughout the show on Wednesday. So I think I'll pay attention to it next time. Yeah?

Saturday, June 26, 2010

emotions seeping out

Last night I laid down to go to sleep. As I was there just waiting for my eyes to close, my brain to stop thinking and my body to rest, it happened. First one drop and then two drops and then a full stream. Moisture seeped from my eyes down my cheeks bypassing my ears and onto the pillow.

I guess sometimes it happened irregardless of how strong I am. Last night I felt broken. Everything seemed to go wrong yesterday. My computer broke (thanks to my handy dandy husband it's now working) and my Garmin broke (though my handy dandy husband tried most of the night, it's still not working right) and there were several other emotional things weighing me down.

Today I am going to see my family. Not just my immediate family, but my entire family. The last time I saw most of this family it was for my Grand daddy's funeral. I'll be honest (when am I not) that it hurts. I remember the first event after my Granny's funeral. It was all I could do to pull myself together to even go. I did not want to go. I couldn't see how people could celebrate one event when my very special Granny had just passed away.

My how have I grown. I really *want* to go today. I'm just afraid of emotions seeping out. Fortunately, I'll be in really good company. I'm sure their emotions will seep out too, maybe not streaming down their face like mine.

Tough day ahead. I'll make it through it, but my emotions are seeping out.

As far as the Garmin, I'm frustrated because it gave me the freedom to go to new places without worry. I knew it would get me where I needed to go. I had plans to go to a few places this week and now, I probably won't go. I just need that little security that even if I got lost I could find my way back home.

Hopefully support for Garmin will be able to help my husband fix the problem on Monday.

Friday, June 25, 2010

Sleep Glorius Sleep

I finally got some decent sleep last night. First I tossed and turned, but somehow I found a comfortable position and drifted off to a world of REM sleep. The past few days, I have had some weird muscle/joint pain. It's been a while since I've had any sort of pain (other than facial head aches) so it's caused a temporary disturbance to get comfortable enough to go to sleep. Typically once I am asleep, I'm asleep for the next 8 to 9 hours. However this week, it's been pretty difficult to get to sleep and to stay asleep.

Last night Sleep & I fought and I won the battle. I'm still fatigued, but thankful that I got 8.5 hours of sleep! Today I'll work 6 to 8 hours and come home to rest before the big family reunion tomorrow. I had planned on taking another little trip on Sunday, but I think I'll stay home and rest instead after the week it's been.

Plan on today to get to writing my review of the Wednesday night's show, but it may not happen until Sunday. Just depends.

Thursday, June 24, 2010

Sleepless in Raleigh Part 2

It's not because of LDN tonight. I have no idea what's wrong with me.

Actually, I do have a little inkling it's because I had all the excess sleep today, but I'll be running on fumes.

Tried to sleep for an hour, got up and piddled around for 30 minutes. Then went back to bed thinking I was ready so tried for another hour and absolutely got no where. So I watched the television super low thinking I'd fall tired quickly (it usually happens that way) and nothing. I tried again for another hour and finally at 3am, I got up. I'm supposed to "wake" at 5am and there is almost no point of trying again.

Back to bed to try to get at least an hour of sleep, but I am WIDE AWAKE.

Has anyone else had this kind of effect after IV Iron? Usually even if I nap (granted this was a 6 hour nap) during the day, I sleep at night.

Edited to add:

I got about 15 minutes total when I went back to bed. I'll be a walking talking zombie today at work.

I got to thinking while I was laying there trying to go to sleep. When I watch SYTYCD for my review, I think I'll watch it three ways. The first without hearing the music to see what I think just based on the moves at all. And then the second with the music. Then a final time to hear what the judges thought at the last viewing. I kind of did the first way last night (when I was trying to watch without waking my hubby up). I wonder if my opinion will change any. I kind of think that without meaning to that 1/4 of my opinion is based on lighting and music. 1/4 of my opinion is based on what the judges say and that only 1/2 of my opinion is based on the actual dancing. Maybe with this new found knowledge (aka there was nothing else to think about at 2:30am) I've compose a "score sheet" to see who should be at the top of the list and who should be at the bottom instead of just arbitarily choosing. Should be fun for a week or so anyways.

Up to 9 points will be given in each category of Lighting, Music and Camera work.
Up to 9 points will be given per each judge's opinion.
up to 18 points will be given in each category of Interaction with partner, Enthusiasm during performance and overall skill.

This should total a max score of 108.

Wednesday, June 23, 2010

My first IV

To say I was nervous would be an understatement.

I was nervous because of two known facts.

Fact 1. My veins are pretty horrible.
Fact 2. My phlebotomist is pretty good, but still has trouble with my veins.

So I got there an hour early to prep for my first IV since October of 2009. This prep includes drinking a lot of water (which began actually 2 hours before I got there at 6am) and using a heating pad on both arms. So after a while of warming, I sat in the chair that makes me pretty nervous. However because my favorite Phlebotomist knows me, my history and my veins ... it makes the process a lot easier. She tourniquets both arms and begins marking possible spots to decide which arm she'll probably use. Then she gives my arms a rest while she gathers supplies and then is ready to pick one of the spots. She chose a vein and I put my trust in her and told her I was confident that she would get it the first time. With a lot of prayer and a lot of skill, she got it the first try.

Because I had a bad experience once, I asked if I could wait until after she inserted the IV to start the Benedryl. She had no trouble with this, but of course it meant I would have to wait 30 minutes to begin the Iron. I had no problems waiting if it meant if she couldn't get a vein that I wouldn't go home exhausted feeling like a mac truck had ran me down. So I pre-pay and set up my next 3 IV's. Just so everyone is in the know, they will be every Wednesday in the afternoon the next 3 Wednesday's. I set up "Old Reliable" with the movie Seven Pounds and start watching.

Shortly into the movie, I was called over to start my test dose of Iron. When they start a person on Iron at my doctor's offfice, they put a small amount into a 10 ml syringe and infuse over 10 minutes. Then you have to wait an hour. So part of that hour I watched the movie and then the fatigue took over. So I put my things away and finished my snack of Almonds and Sharp Cheddar Cheese. I kept dozing off, but I had some chatty neighbors so I pretty much forced myself awake not to be rude to the kind ladies next to me interested in Lyme. I knew as soon as I hit the truck that I would be out cold.

Things went well with the test dose so I started the next infusion. It was put in a 60 ML syringe and it was infused over a 30 minute span. I was done by 11. I got there at 8 and was done by 11. I'm not sure what time I got home, but I woke up once hearing the dog barking. That sly devil knew I was home and wanted to go out, but I was too conked out to take him. So stumbled to my bedroom door and did something I *never* do. I let that little sly devil come into the bed with me knowing it would stop his barking because he'd think he was "sneaking" into the bedroom.

That did the trick. I slept solid for about 5 hours and then once I woke briefly I forced myself awake. I feel pretty good other than being extremely fatigued. I had one bout of diarhhea after the completion of the IV, but that was the only bout. It was probably more of built up nerves than anything. To tell you how solidly I slept, there was apparently a really bad thunderstorm here. I didn't know anything about it. I walked out to take Bark E Bark for a quick walk and the ground was soaked and the power went out at some point too.

I met another Lyme patient. I wish I had been more coherent, but there at the end it was all I could do to string one word to another to form a sentence. When I got home, I typed down her name to help me remember if she emails.

Tuesday, June 22, 2010

My 9 year old boy

I can't believe that this little devil is 9 years old.

He's got several nicknames, but Bark E Bark & the Funky Butt is my favorite and that is is favorite pose.

Speaking of "Bark E Bark" better get going because he is barking to go outside (yes in this hot weather ~ he's crazy I tell ya).

Check out this contest by Sailor & Company.

Sleepless in Raleigh

Gah. I just want to sleep well.







Any Questions?

So between 9 and 1, I woke up no less than a dozen times after having dreams. Some were so intense that I woke up with a racing heart and rapid breathing. Finally, I gave in at 1:30 and got up for a bit. Now I have to try to go back to sleep.

I don't know which is worse: The headaches, the dreams or the not sleeping. At least (knock on wood) I haven't gotten the terrible headaches on the .5mg dosage.

** got about 90 more minutes of sleep before I had to wake up for work. Pretty good considering.

Sunday, June 20, 2010

LDN Update

With the exception of being really hot first thing in the morning and having tons of dreams, so far so good. So I'm stepping it up. Step B was 2 nights on 1 night off. Step C is 3 nights on 1 night off. Step C is as follows:

LDN on Sunday, Monday and Tuesday.

No LDN on Wednesday

LDN on Thursday, Friday and Saturday.

No LDN on Sunday

LDN on Monday, Tuesday and Wednesday.

No LDN on Thursday

Then if all things go well, I'll start Step D on that Friday.

Daddy's Girl

There is no denying that I am my Dad's daughter. I get so many characteristics from him. I am without a doubt his child. We enjoy the same television shows (Golf not included) and laugh at the kind of bodily function cards.

From 7th to 12th grade, I figured out that I spent a lot of hours in the car with my Dad going to and from school. Still to this day some of those things are, "What happened in the car stays in the car" kinds of conversations. Wouldn't Mom flip out if she knew that every afternoon we stopped by *** *** ******* **** ****** **** ***** ? Oh wait I can't share that. Wouldn't Mom flip out if she knew that almost every afternoon I ***** * *******? oh wait I can't share that. ;) Then there's the time that we ... oh wait I can't share that either.

Every day I spent at least 40 minutes in the car with my Dad. That's 200 minutes per week. Of course, you have to discount the time not spent in school. So just for simplicity sakes, I'll take away 8 weeks each year leaving only 44 weeks instead of 52 weeks. So calculating 200 minutes for 44 weeks, that leaves a total of 8800 minutes I spent with my Dad in the car for one year of school. Times that number by 6 for 6 years of education and you get a whopping 52,800 minutes for 6 years. That's give or take since I didn't include days where we spent 80 minutes in the car instead of 40 or the days we drove to Durham NC for music supplies or the days off for spring break. I spent 880 hours with my Dad in the car just the two of us. That's a lot of time for listening to oldies 100.7, listening to music arranged by Hal Leonard, listening to me practicing the flute and rolling down the windows for *ahem* flatulence passing.

Speaking of flatulence, this made me chuckle.

A fart chart indeed.

Happy Farter's Father's Day!

Thursday, June 17, 2010


So You Think You Can Dance is back .. and it's better than ever.

In order, the male dancers from favorite to least favorite prior to Wednesday Night:

Billy, Kent, Robert, Jose, Alex and Adechike.

The new list is as follows from favorite to least favorite

Alex, Robert, Kent, Adechike, Jose, Billy

The female list prior to Wednesday's show:
Lauren, Christina, Alexie, Ashley, Melinda

The female list after Wednesday's show:
Christina, Lauren, Ashley, Alexie, Melinda

Overall list from favorite to least favorite


** jump to next standards**


** jump to next standards **

Alex & Allison with Sonya's Contemporary Routine. It takes a lot to knock the breath out of me. It takes perfect movement accompanied by the right choreography, the right costumes, the right lighting, the right music, Alex Wong and Allison. This routine gave me goose bumps on top of goose bumps on top of more goose bumps. Alex's movement reminded me a bit of Hok and Allison was just a breathe of dancing genius. I honestly don't think that Alex could have performed this as well without Allison as his partner and vice versa. I mean they left Nigel almost speechless. If Mary Murphy were judging, she would be screaming right about now. One of the best routines I've seen ever.

Robert & Courtney with Sean Cheesman African Dance Routine. First, I just LOVE Courtney. She is one of my favorites from all the seasons so I had high expectations for this routine. Second, I knew hardly anything about Robert except that he & Billy performed together. So the fact he's "unknown" actually makes me like him before I even see him because there is always one unknown that does really well. So what can I say, I really loved this. Robert perfomed. He got into character and performed (and disappeared and he didn't kill Courtney).

Christina & Mark with Sonya's Jazz routine. I love Sonya and I love Mark so what's not to love about this Jazz routine. I love that Christina's movements were so fluid and yet so jagged when it was called for. I almost felt like I was watching Courtney instead of Christina which gives me great hope that I will love Christina this season.

*** Jump ***

Lauren & Ade with Mandy Moore's Pop Jazz Routine. I think the biggest thing in this routine was that Lauren was constantly aware of her audience. In this particular routine, she needed to be more focusing on Ade. It's a hard act to balance. However, I did enjoy it very much. If her face had been focused more on Ade instead of the audience, this would have moved up on my like list. She'll improve that as the season goes on I'm sure.

Kent & Anya with Tony & Melony's routine. I think Kent did a really good job with this ballroom routine with Anya. I had to chuckle at his own comment about his mouth because about half way through the routine I thought, "What is he doing with his mouth?" His face would be really focused and then out would come a Kent smile and then his mouth thing. If you guys have it on DVR, watch it again and just watch his mouth. Haa haa. He really held his own though. I enjoyed it more than Adechike's performance. And like Nigel said ... Kent really enjoyed that performance.

Ashley & Neil with Tyce's Contemporary. I loved it. I mean there was nothing that popped out to me like Alex & Christina's performances, but I see that Ashley could do well in this if the audience gets to know her. I feel like I've barely seen her until tonight.

Adechike & Kathryn with Travis Wall's Jazz Routine. While the judges weren't thrilled with Adechike's getting into character, I really enjoyed the dance. I think it has something to do with loving Kathryn, but I thought Adechike did an admiral job with Travis' choreography.

*** Big Jump ****

Jose & Comfort with NappyTabs Hip Hop. Now the thing is, I typically love NappyTabs and love Jose, but with her original season I was discomforted with Comfort so I found myself watching her to see if she'd hit it instead of watching Jose. So this was one of my least favorite routines. It would have been interesting to see whether Billy would have done better with Hip Hop and how Jose would have done with the Broadway routine. So it's kind of difficult for me to say I didn't enjoy it because I really do enjoy both Jose & Billy.

Alexie & Twitch with Nappy Tabs Hip Hop. I think part of the reason I'm dissing the Hip Hop on Wednesday night's show is that there have been so many excellent routines that it's difficult to accept just an "okay" performance as spectacular one. Twitch outshined Alexie in this. There isn't much more I can say on it. She tried, but I just wasn't a fan of it. I think it wasn't hard hitting enough and was a little too smooth.

Billy & Lauren with Tyce's Broadway routine. Well to me it just seemed like Billy was going from move to move concentrating on each movement as opposed to performing. I'm not sure if it was Tyce's choreography or if it was Billy's performance, but I found myself "counting" to 16 in rapid succession as opposed to watching them dance. I kept looking at Lauren instead of Billy.

Melinda & Pasha with Tony & Melony's Jive Routine. I expected more with the Jive out of Melinda. Just like the judges (IE Mia Michaels) said, her legs seemed to have a bit of difficulty really digging into the Jive. I kept watching Pasha the first time around and the second time around (prior to hearing judges comments) I noticed how her legs didn't move quite right.

Wednesday, June 16, 2010

the thing about waiting

The longer I have to "prepare" for something the more nerves I get.

If I had just gone ahead and gotten the iron as planned on the past Friday, I would no longer be nervous. It would have happened within 2 days of getting my results. Now as it is, I have to wait until the 23rd. The days seem to be lasting 48 hours instead of 24 hours and each day I seem to be getting more fatigued and more nervous.

The 23rd will be here before I know it and afterwards, I'll wonder why I was even nervous.

Sunday, June 13, 2010

LDN Update

Part of the reason I keep this blog is so that when I return for follow ups, I can remember what happened. Since my appointment with my LLMD, I have had 5 doses of .5mg of LDN.

I took my first .5mg on Saturday night June 5th. Sunday morning, I woke up feeling extremely feverish. I knew that more than likely I did not have a fever, but took my temp. I had a small sore throat that lasted 2 hours and a picc line bump. Pretty much by noon, I was feeling somewhat normal. Monday morning I woke with another picc line bump and had shoulder pain majority of the day.

I took my second .5mg on Monday night June 7th. I had one nightmare Monday into Tuesday morning which possibly caused me to wake up fatigued. I had a small headache Tuesday evening for about three hours and my mouth was numb for most of the day. Wednesday I had Jaw Pain and a headache the majority of the day, but it wasn't so disabling that I couldn't function.

I took the third .5mg on Wednesday night June 9th and nothing major happened Thursday at all. I knew I would be ready for the next step. Friday I had cheek bone pain the majority of the day, but nothing else to note. So I took the 4th dose on Friday night June 10th. I slept for almost 14 hours Friday night into Saturday. I woke up unfatigued and felt pretty good the majority of the day though I did wake feeling feverish. However, it was under 98 degrees. I took my 5th dose on Saturday night June 11th. This dose caused me to have three nightmares and I didn't sleep well, but I do feel rested upon waking. I did feel feverish again so I took the temp and discovered it was 98.6 (which for me is about one degree higher than normal) and a stuffy nose. Currently I have no pain, but that could change through out the day. Tonight I will have a night off of the LDN. The plan for now is

LDN on Monday and Tuesday. No LDN on Wednesday. LDN on Thursday and Friday. No LDN on Saturday. As long as things go well with this new regiment, I will begin the next step a week from today. I'm taking this really slowly.

Friday, June 11, 2010

Another pen moment

On Thursday, I sat down and again put pen to paper.

I am feeling hesitation. I live in the state of doubt and uncertainty. Early this year, I tentatively thought that I had overcome the worst and yet was extremely hopeful that tomorrow would be better than the day before. At times others' expectations are higher than I can reach with my Borrelia filled body. Trying to be courageous, I push myself past my own limitations by cruising past my breaking point.

Because I have seen such good days, my own expectations are higher today than they were three years ago. It is not uncommon for me to hide the pain instead of exposing it for the world to see in moments of weakness. So the thought of becoming one with the ugly green chair in the communal IV room brings me dread. It's the knowledge that I would be confined to that chair by the IV's that sustain my life that terrifies me. I thought I was past the stage of Lyme where another person would see me at my weakest.

Even though it's difficult, I remember the days that I had to allow someone else to carry my lifeless body home and leave me there alone. Petrified by the thought I might not wake from my mini Benedryl coma, I would fight through the exhaustion to stay awake. Mr. Sandman always won that battle and I would drift off finally waking 12 hours later thankful to be alive.

I'm grateful that I've been IV free for over a year, but wish that I could extend this outcome a little further out. In a way, I got my wish when my first treatment was postponed. Knowledge is power. I know pretty much what will happen and I know that by two or three days after this treatment that I will feel so much better. I don't think this will happen, I expect it will. Like I said, my own expectations are higher.

Thursday, June 10, 2010

Sharing my thoughts

The past few days I have been doodling my thoughts down on paper. I have been writing just to get the stuff out of my head. Before the internet and computer ages, this is what I would do if I had a spare moment. I really don't put pen to paper that often anymore, but this week I have been spending a lot of time writing things down.

I'm a little embarrassed because I think one of those papers I left on a desk at work. I hope I didn't, but I bet I did. EEKS. One thing that I wrote on Monday two days after I found out that my blood was not in desirable range. It was when I thought that I may have been actively bleeding for months. It was also two days after I realized that Lyme lives in me still and is just waiting to come out to play.

So without futher ado:

As a single tear plops down the side of my cheek, I realize I am teetering on the edge again. Borrelia burgdorferi bounces between the cells of my being and I wonder if my body is failing me again. I just know that Lyme is having a ball kicking around on the inside. My "friends" have taken up residence in every muscle, bone and cell. Not even one doctor has figured out how to serve an eviction notice to these guests that refuse to leave.

There are so many questions asked and very few answers given. You would think by now that the doctors and researchers would have the answer to the biggest question of all. How do you rid a patient's body of Borrelia burgdorferi? Each doctor struggles to provide their unique patient with a key to the quality of life. With the test of each blood droplet, I wonder if it will ever truly be gone. Will the mark of Lyme ever disappear from my body? Will my soul ever know life without Lyme?

Lyme keeps taking things away from me. It thrives on each breath I take and I ponder if it's better to understand this illness or keep on living in the darkness where the Borrelia lives. I feel my life spiraling out of control each passing day and yet feel gratitude each morning when my eyes reopen and I realize that I am awake again.

Even though Lyme has taken many things away, it has also provided me with the opportunity to appreciate every moment I have and take every chance I can to educate others about this devastating illness. Education is the key to the prevention of Lyme. If those with Lyme would speak out to others about the effects of this illness, then others would be aware that this exists.

Wednesday, June 9, 2010

Praise God

Update: Change of plans. IV won't start until the 23rd due to some law about a nurse having to be there for my first IV. Any nurses want to come with? ;)

**** Original Post ****

So I called my doctor's office today to get the results of my test. Since I received no answer, I left a message and dropped by after work. Well, I said a quick prayer before the assistant handed me my paperwork. I scan the paper and realize that my blood is almost perfect! There were only two markers that were flagged out of normal range. Well I know that even that may not mean that it's right so I looked closely at my numbers.

Here is what I was looking at:

White Blood Count: On March 10th it was on the low end of normal at 4.3. On Saturday, it was 7.9. This is MUCH better.

Red Blood Count: On March 10th, it was on the low end of normal at 3.99. On Saturday, it was 4.95. This is better.

Hemoglobin: On March 10th, it was out of range on the low end at 11.9. On Saturday, it was 14.7. This is much better and actually closer to the high end of normal.

Hematocrit: On March 10th, it was 34.7. This was too low. On Saturday, it was 44.5. This is actually too high.

Platelets: On March 10th, it was too low at 102. On Saturday, it was right where it needs to be at 311. That's over 200 points people! Woo!

Now the only two things that were "off" range were my Hematocrit which was too high and my Carbon Dioxide was too low at 18. Last time my Carbon Dioxide was at 21.

What does all of this mean? Well, my instructions were as follows:

1. If your blood comes back better, you will start IV Iron as soon as possible.

So since they are better, I will begin IV Iron on Friday. My boss is being so kind by allowing me to have the day off at the very last minute. I will have to take Benedryl before my first IV so I will be completely unfunctioning for 24 hours. Normally I take 1/2 of 25mg and I will be taking 50 mg. So I won't be able to do anything on Friday, but hopefully by Saturday I will be feeling much better.

Tuesday, June 8, 2010

Small Update

I've not heard anything from the doctors, but I hadn't expected to as most Mondays they are closed.

I began the .5mg regiment of LDN on Saturday night. I woke up Sunday morning feeling feverish. Often times when I feel feverish, I'm not actually running a fever. I feel swollen and hot. Sometimes there's a reason (like if the air got set on 80 accidentally because I was freezing cold the night before) and other times it's just that I feel extremely hot. In any case, I woke up Sunday morning feeling feverish with a 98.2 temp. I usually sit around 97 something so while 98.2 isn't high it was higher than my typical temp. I also woke up with a sore throat that lasted 2 hours. No biggie, but still annoying. I had one of my bumps on the area formerally known as the picc line site and by noon I was feeling okay.

Sunday Night, per dr's order, I didn't take the .5mg. Instead I had a night of rest. Monday I woke up with another bump and had shoulder pain the majority of the day. I woke up this morning without shoulder pain so that's good. Monday night, I took another dose of .5mg. It did give me one nightmare that woke me briefly, but I really don't even remember what it was. So that's good too. Usually I remember most of my dreams.

Tonight I'm heading to see a screening of Under Our Skin. So stoked to see it with other Lymies. Have a good one ya'll.

Sunday, June 6, 2010

Welcome to the Lyme Life

Just in case you're new to my journey, my name is Jennifer and this is my blog. I have been actively fighting this world of Lyme Disease and co-infections since March of 2007. I've also dabbled in mineral deficiency, Progesterone Deficiencies, Heavy Metal Toxicity and other health issues. I had a PICC inserted into my right arm July of 2008 and I battled with it every day to keep it in for almost 7 months. There were several moments where it probably should have been pulled, but between my wonderful nurses, doctor, picc line insertion team and husband ... we managed to keep it in as long as I needed it. We used it up to the night before it was finally pulled.

I've used regular antibiotics, supplemental therapies, IV vitamin & minerals, yeast battling medications and chelation treatment. I know there is more that I have used, but the most important part of my protocol was keeping the Candida (yeast) at bay. I feel as if the IV vitamin & minerals did the best at keeping my energy levels up. I had an extremely experimental IV which I used for well over 7 months (probably more like 9 months) which isn't available any more. I feel like that IV did more for more than anything else I have tried.

Now while that stuff pretty much rules my life, I am a person. I live my life the best I can with the skills that I have and the love I receive. My husband and I have been coupled together now for 12 years. This past April, we celebrated our 10 year wedding anniversary. He has been with me on almost every single doctor visit I have endured. He's only missed ONE hospital visit and that one was just a quick check on my picc line when I was having an allergic reaction to the cleaning solution. I wasn't even there that long. He's supported me with his quirky sense of humor and determination to get to the root of my health issues. Google was his best friend when I spiraled out of control in 2006/2007. He is the one that found my Lyme Doctor, he is the one that diagnosed me, and he is the one that ensured that I filled out the paperwork to get to see the Great Oz of Lyme.

Here are my most relevant posts to my health. Start at the top and work your way down for the Chronological Lyme Journey.

My Diagnosis
My Therapy
A day in the life of a treatment
My PICC Line Story Part 1
My PICC Line Story Part 2
Live Blood Cell first visit
Grey's PICC Line Story
Slow Progress
My LLMD appt
November 15, 2008 Update
Chelation Challenge
Mercury Toxicity (My Mercury test came back negative)
Living the Lyme Life Post
Aluminum Toxicity
PICC Line Removal
Two weeks post PICC
Two year anniversary plus supplements
March 15, 2009 Update
Post PICC Pics
Conflicted Lymie
CDC Positive Test Results
Ups and down of Lyme
Live Blood Cell of Rob & Me
Previous Photos of me
Small Victories
Curious Lymies Goes to the Doc
OCD about ticks
The Serenity Prayer
August 8, 2009 Update
Supplement Strategy
August 30, 2009 Update (Rob & Jennifer)
Starting LDN
Explaining LDN
October 10, 2009 Update
January 9, 2010 Update
Third Anniversary of Diagnosis
March 18, 2010 Gotta Go
March 25, 2010 Rough Week
May 2, 2010 Swollen Eyes
May 7, 2010 Weird Bruise on Hand
May 22, 2010 Waiting
May 22, 2010 It dropped
New Dose LDN
June 5, 2010 Update

There ya go. The most important health blogs all in one place! Enjoy reading if you've not read them before.

Saturday, June 5, 2010

6-5-2010 Update

So to start, we discussed my poor reaction to the 1mg of LDN. Then we talked about how I had been feeling since January. I told him how shocked I was that my blood tests were so poor when I felt so wonderfully normal when they were drawn. He too seemed shocked that my test results were so low. All of the low things concerned him, but the thing that was extremely worrysome was that in addition to having low platelets and hemoglobin my typically normal White Blood Cells were flirting with the low normal line. In addition, even though I was on oral Iron capsules and Vitamin D drops, both of those were also low.

Based on my labs in march, there is a chance that I am actively bleeding somewhere in my body. He said more than likely it's in the GI area. However, I do not have any symptoms of a GI bleed. There is no stomach pain, back pain, diarrhea or obviously bloody stools. He also said that it's odd that someone so young would have this kind of problem. The only thing that gives him the idea is that my blood levels are so low. So he sent me on up to Lab Corp to have the labs redone.

While we were discussing the possible active bleeding, we also talked about my low iron levels. In layman's terms, there is no need to replenish a gas tank with gas if that tank has a hole in it. In other words if there is an active bleed, no need to waste perfectly good money by putting in intravenous iron because it will just come out again. So we wait for a few days to find out the results of my lab work.

If the test comes back similar to the results in March, then I'll have a second test. Second test is a little gross, but simply put they will be testing to see if my BM's have blood in them. If Lab work is Bad and the Stool test has blood, then I'll be going to see a Gastroenterologist to see what is going on. If the sample shows no blood (and my labs are improved), then I will start IV iron since my levels are overtly low in order to replenish my iron and it should improve my hemoglobin levels as well.

Since my Natural Killer Cells are also low, I am at severe risk of the Lyme Disease pouncing back and I could be back to square one. The biggest problem I see with that is that the treatment that helped me the most is no longer available for my usage. So we must get my Natural Killer Cells back in the normal range in order for me to continue fighting Lyme Disease. LDN is my option for doing that. So I will be taking LDN slow and steady. We're talking really slowly.

I will begin by using only 1/2 of the capsule every other day. Then I will move to taking 1/2 capsule 2 days off one and then 3 days off one and so on and so forth until I am on 1/2 capsule 7 days with no problems. Then I'll move on to 1mg 1 night, 1/2 caps for 2 nights. We'll do this until I can reach a therapeutic dose (hopefully we'll reach the 4.5 mg). In the meantime, I'll be using another supplement in addition to the really low dose of LDN. In addition to this, I'm increasing my Vitamin D drops from 10,000 units per day to 20,000 units per day.

All of this is a lot to digest since I have been feeling so well this year. I'm just praying that my blood today looks better than March. Unless something drastic happens (like what happened this week), I'll be going back in July for another check of Ferritin, Vitamin D and CBC blood work before my follow up in August. If my tests from this past Saturday are okay, I'll be starting IV iron as soon as possible so that I can complete my iron IV's before my blood work in July.

More Prayers

I'm not sure I am ready to divulge all of the information I learned today, but what I would really like prayers regarding is the emergency blood work taken today. Please pray that the blood work looks remarkably better than it did in March. Please pray that March was just a fluke and that today's blood looks normal. This is in regards to the Hemoglobin & Platelet Counts. Thanks so much.


There are lots of things to be praying for other than my health. There are things that are in my heart that I don't feel comfortable saying out-loud to anyone other than my husband so if you would pray simply that everything that is on Jennifer's heart and mind would be eased soon that would be fabulous. If I can, I will share later on. However right now it's on a need to know basis and no one else really needs to know.

On the other front, I am going to see my LLMD today. I had a deep discussion with his assistant when I popped in on Wednesday regarding my headache. We talked about the controversy of Lyme Disease and how Lyme doctors are so rare. She told me that sometimes she gets phone calls and the person whispers, "Is he an LLMD?" Controversy runs rapid for a MD that treats Lyme Disease. Medical Boards are often on the hunt for MD's that treat this disease. My fear is that one of these days I will go and his office will be shut down. That's why I rarely say his name outloud. Sometimes even if someone flat out asks if I see him, I will say "I can not confirm or deny that I do." Makes me feel like he's in the witness protection program. I bet most if not all of his Lyme patients feel the same way I do.

In any case, my doctor is extremely smart. He treats and diagnoses based on symptoms and not necessarily test results. He has seen enough cases of enough diseases to know that certain symptoms generally mean certain diseases. If it's not dangerous to go ahead and treat for that disease, why not get started and get the labs at the same time instead of waiting for the labs to come back and then treat? In the entire time I've been there, he has NEVER been wrong about a single diagnosis. Most times the lab work backs him up. I say most because of the complexity about the tick borne illnesses tests.

In any case, I have been doing fairly well. My symptoms have been minimal. However at my husband's last appointment, he mentioned that I could have a potential backslide due to all the stress in my life (you have to admit a Grandfather's passing, an Uncle's heart surgery and an assessment at work all within about a month together are HUGE stresses). He suggested that in July he would wrote out a lower dose prescription for something I really need to be on. Though I kind of thought he was nuts in my head since I had overall been physically feeling great, I knew deep down that he would write it out anyways and at some point he'd have the test results to prove that I needed it.

So I decided to get the numbers on my side and that's when I requested my test results. As soon as I saw them, I knew. I have been his patient so long that I know which numbers he looks at and which numbers he's more concerned with. It was immediately alarming when I saw the number he really was interested in was off the normal range. It was also immediately alarming when the office called not once, but twice within a few hours of receiving the test results.

Ultimately ,even though it would have been helpful to have these results in the beginning of April, I think that God held off the results until I had mentally handled all the things I needed to handle before I could even begin to think about the possibility of a relapse. Now there are other things going on, but the assessment is over at work (one of the two anyways) and I am at ease with my Grandfather's passsing and my Uncle is at home after being at the hospital for 3 weeks or so.

While there are now other things on my plate, I am ready to tackle this head on. That's why when the LDN arrived I immediately began to take it. What I wasn't counting on was a reaction. May 28th I took my first dose. May 29th I felt nothing really. May 29th I took my 2nd dose. May 30th, I felt nothing really. I was woohooing all the way. I thought if it went well enough that I'd be able to increase my dose from 1mg to 2mg at my appointment in July. Well I took the third dose on May 30th. When I woke up on May 31st, I had a small headache. I thought it was kind of odd, but went about my day. The headache got worse. It never eased off.

I continued being a fighter and took the 4th dose on May 31st. On June 1st, I had the worst headache of my life. It rivaled the headaches I got pre-diagnosis. It was all I could do to function. I really just wanted to place an ice pack on my face and crawl into a hole where there was no light or sounds. I rivaled on though. June 1st, I took my 5th dose and by the next day my head was hurting even worse. As you know, I drove myself to the LLMD's. That's the day I discussed the controvery of Lyme with the assistant. Even though my head was killing me, I wanted to make sure she understood that I had been in a remission state and that this wasn't my normal.

So June 2nd, No LDN. June 3rd woke up with a less severe headache. No LDN on June 3rd either, woke up on June 4th feeling as well as I had before May 28th. She told me that unless I heard differently to not take the LDN until I had my appointment today. She then suggested that he will probably want me on IV's.

At 10 to 11, I will probably be getting news that I don't want. However, I will take what he has to say and swallow it with pride knowing that I did it once and I can do it again. Who knows, maybe just maybe, he may even say that it's just side effects. Haa. But my lab works proves that he knows what he's doing.

So prayers all around for my heart and mind and even those things that I haven't said outloud.

Friday, June 4, 2010

Not knowing vs. knowing

My guardian angels have their work cut out for me today.

Do you ever just "not want to know" something? Ever think your life would be better if you just didn't know things? I thought my life was perfect. I was doing well. Then I found out about my test results. My little perfect world fell apart. Back to the regiment. Back to the medicine.

My headache is better, but do I really want to know? God knows, God has known since before I was born. Do I really want to know now? Do I want to hear the words?

I may not want to know, but tomorrow I see the doctor.

Tick Removal Instructions

Tick Removal Post at Tick Lady

Thursday, June 3, 2010

Tick Lady

So I am now the tick lady. I am by no means an expert, but people come to me all the time telling me about the tick they found either crawling on their carpet or attached to their body. At the beginning of May, I had the idea to have a blog simply for information. No personal stories really, just information. So, I opened it and there are two posts there already. It may take a while to get it really running, but wanted to share it with everyone.

The Tick Lady Blog

Wednesday, June 2, 2010

Emergency Follow Up

So my headache got a tad bit better this morning. In fact, it was gone. I thought for a brief time that my prayer warriors really were busy last night. Well less than four hours later, it was back with a vengeance. So I rushed to the LLMD's office this afternoon to ask what I should do.

First instructions: Don't take the LDN tonight and I'd hear from them tomorrow.

Second instructions: Make new follow up for next possible available day. That would be Saturday morning.

Third instructions: Scratch first instructions. Don't take LDN until I talk to Doctor on Saturday unless I hear from them.

I have a few theories:
A: Lyme is coming back
B: The LDN is causing the headache as a side effect
C: The weather pressure is causing the headache (we've pretty much had rain/thunder every day the last two or three weeks)
D: Sinus infection without the mucus (but I always have mucus with my sinus infections).
E: Something else I haven't thought of.

Tuesday, June 1, 2010


I desperately need your prayers. I have had a headache for the last 48 hours. It really hasn't let up much at all. The worst part is that I have this cough. Every time I cough, my head pounds. So if you guys could please pray that this headache would stop, that would be absolutely fabulous. While you're at it, pray for the cough too.

I'm not sure if the LDN is giving me a herx or if it's just a cold. To top it off, I worked almost a 10 hour day. Now until recently I hadn't even worked a full 8 hour day in a couple of years. So this was a killer on top of the already pain in the head headache. AND the traffic was horrendous on teh way home. So instead of taking 45 minutes to get home, it took 85 minutes.

Just pray for me. Thanks guys. You're awesome.