Monday, November 28, 2011

Rest In Peace Ear Mole

June 11, 2009 - November 28, 2011, Rest in Peace Ear Mole.

Remember when a Curious Lymie went to the regular doctor because a mole popped up on my ear?

Well, it began itching and burning this week. I had just looked at it a few weeks ago, but because it was itching so much I decided to take a peek at it yesterday. It didn't take long to realize it had doubled in size and there appeared to be some dark spots too. So this morning I called for an appointment to have it checked out again.

My favorite nurse practitioner checked it out, sliced it off and sent me on my way. It's being sent for pathology. Probably nothing, but a just in case thing

Saturday, November 26, 2011

Love-A-Fair Flowers

Sorry this is so delayed. I forgot they were in que to be posted:

I love taking photos. I love flowers and plants. I love photographing flowers and plants. So my first stop at the Fair was to the flower/plant section. :) Here are a few that made me smile. All of my photographs are Straight Out of Camera. I don't edit them with any programs. So when I get home and see pictures like these, I smile. I love my camera. Though we do have a love hate relationship when the battery is getting low and it doesn't want to actually take a photograph. But without further ado,


I love flowers in color, but there is something special about a black & white photograph.

Orchids - Colors!

And my favorite of the day: (I may just have to print it off and put it in the my kitchen!)

Wednesday, November 23, 2011

HBOT Update

My Hyperbaric treatments are going really well. The number one symptom that made us believe that the Lyme had returned was headaches. They were terrible. I had migraines that lasted for days, ease off just a little bit and then come back with a vengeance. In total, I've had about 17 hours of treatment in the HBOT. It's been 3 weeks since I've had a headache, even a mild one.

If the rest of the symptoms would go away, I'd be one happy lady. It's already much easier to live without the headaches.

Wednesday, November 16, 2011

Given Hope

I was reminded today how much hope our Lyme doctor's give us and then shortly thereafter I was reminded how much they put on the line every day to give us that hope.

I'll never forget the emotions I felt during my very first visit to my Lyme doctor's office. I felt justified. I felt like someone cared. I felt like someone listened. I felt hope.

Today as I was walking out of the Lyme office, I overheard someone thanking the patient coordinator for giving their family hope for the first time in years. I remember being that person.

Then I got home. Found out that another Lyme doctor is having his license suspended. It's so frustrating. All those patients of his that he has given hope ...

Here is an article written by PJ Lanston in the Public Health Alert regarding Dr. Hoffman. It's so upsetting.

Tuesday, November 15, 2011

It's NOT me

There is someone on Facebook who has the name "Livingthe Lymelife." That is person is not me. Just wanted a little FYI on my blog.

Thursday, November 10, 2011

Lyme Kills II

I wrote yesterday that I would share what I wrote in the chamber. Here it is.

Lyme Disease Kills. It dashes hopes and dreams of the innocent. When I graduated from High School, I had great expectations that college would open up an entire new world for me to be someone different. Then, it happened. A few weeks prior to commencing college a radioactive tick bit me. Okay Okay, there was no radioactivity, but soon my body and mind came to a crashing halt. Lyme killed my ambition, my love for a phenomenal novel and my quiet nature. Lyme Disease kills.

Ironically, I was someone different in college. I was hurt and angry and sick. And no one would listen. Okay Okay, some listened, but they weren't the ones that could do anything about it. In fact, they could do nothing except for clean the blood from my head when I ran into something yet again, remind me to breathe after a seizure, hold my hair back while I vomited or hold my soda for me while I tried to sip. Sometimes, they held a straw in my mouth and dropped bits of soda into my mouth. I felt, at times, a bit like a bird -- helpless and wounded. There were times when I was so weak, I couldn't eat. Not being able to eat made me weaker. It was a vicious cycle. Lyme Disease kills.

In the end, I had to fight for myself. I had to fight for what was rightfully mine - the right to an education - Advisers were against me. Professors were against me. Doctors were against me. People I didn't even know well were against me. Here I am again. Fighting for myself. Fighting for an education. If I didn't fight for myself, who would? There are a whole slew of folks that would fight for me, but no one fights better for me than me.

I will admit that I am in a whole lot better place now than I was so many years ago. I have several people at the school that are working for me and I haven't met the professor yet, but if she's anything like the EDU adviser -- she'll be in my corner too. They know nothing about Lyme. They don't know I have health problems. I debate whether to mention it. I also have a phenomenal doctor on my side, a husband on my side, my family on my side and friends. Fantastic friends. Friends that know when I need a hug or a simple I love you.

Lyme may kill. Lyme may have killed my ambition, my hopes and my dreams before, but it will not kill me now. I will push through this. I will get through this again.

As a post note: I got registered today for the classes I want to take in the spring. I'm so excited and can't wait to see how my brain holds up during the spring semester. My biggest concern is the timing. It's from 6pm to 8:50pm. I typically can't stay awake after 8pm. Even if my eyes are open, my brain is generally down. So pray that my brain and body will stay awake at one night a week from January until May. When I was taking classes in 2002, I got a 4.0. This was 5 years before my diagnosis. Here I am 4 1/2 years after diagnosis and we'll see if I can continue this 4.0 trend.

Wednesday, November 9, 2011

Lyme kills ...

So I rarely put pencil to paper anymore. Well yesterday while I was in the Hyperbaric Oxygen Chamber, I took my notebook and pencil in with me. It's loud in there, but I took it in there to make a phone call. Silly I know, but I knew that I needed to make this phone call. I am taking the brave step in the Lyme world to take a couple of classes at our local community college. I applied in October and on Friday I got my acceptance letter (as I spoke of in my last post about Acceptance). Well, I decided since this week was going to be insanely busy that I would go to the college on Monday to find out what I could do about registration and paying.

Well, I went to Admissions to clarify that my name was in the system correctly as the name on my letter was spelled incorrectly. So the lady at the front office clarified that not only was I in the system, but it was spelled correctly. She told me I needed to go to the CAP (don't' ask what it stands for, I can't remember) office and explained where it was. So I huff it down the hall and am exhausted by the time I get there (and it's really not that far away). She says, "Name? Appointment time?" uh HUH? I need an appointment? Seriously should have known that, but I didn't. Stupid me. Stupid LYME.

She tells me to go over to the computer and log in to see when my classes are offered. Me being a stupid Lyme, I got as far as to the "Web Advisor" screen before my dumb brain locked up on me. She came over and began to multitask beautifully. I even commented on it. She helped the guy next to me, the girl on the phone and me all at the same time! So she tells me exactly what to do and we get the, "NOT IN SYSTEM, SEE SYSTEM ADMINISTRATOR." She says, "Go back to the admission office and have them straighten this out. we can't do anything until that's fixed." So I huff it back down and explain the problem. The nice CAP lady even printed off the error so they could see it.

So, I get down there and they say that I'd have to come back later because the lady that would be able to help me wouldn't be there until the next day. I almost broke down at this point because I was exhausted, fatigued (and yes those are two different things!) and drained. My legs felt like the flesh was being ripped right off, but I kept my cool. I explained that I was an Early Childhood Educator and that I worked in another county and my hours were insane this week. Coming to campus on another day this week really wasn't an option and because I'm a special student only taking two classes for work that I really needed it figured out asap.

She disappeared into the back and came back about 10 minutes later explaining there was some kind of glitch in my file and she would try her best to figure it out. She went from office to office (taking a good 5 to 10 minutes in each one) with my file. Finally she emerged with a lady who said that it must have been user error. And although I wouldn't put it past me, I was with the CAP lady and she does this on a daily basis. So I did the exact procedure that I did with the CAP lady. Sure enough, same error.

She left again and then came back and said it was something they couldn't' figure out, but I couldn't register until the 9th anyways so as long as they had it figured out by then I would be good. So I left feeling utterly dejected. I couldn't even do something simple like that then how would I be able to take these classes next semester. What did this story have to do with the HBOT and the phone call?

Well, I needed to make the call to the office to see if they had figured it out. However the chamber seemed louder than normal so I decided to wait. After I was in there about 30 minutes, the phone rang. It was a lady named Christy. Now I don't know if this was any of the ladies I worked with on Monday, but she was very kind. Explaining that my student ID should now work and if I could just try with her on the phone. As I'm talking to her explaining that I'm in an Oxygen Chamber and couldn't just get online at that very moment, I realized how odd my life sounded to those not in the know. Who else would she call that in that very moment would be in an Oxygen Chamber? Seriously.

She wasn't even sure how to respond. I told her that I had tried before getting into the chamber to log in and was able to see my "user name," but that when I tried to set my password it said that "No person ID was found in directory." She said she would continue to work on it. I continued to pray about it. Then, I put pen to paper. I wrote and I wrote.

I'll share what I wrote with you tomorrow, but for now let me tell you that Christy worked and worked on my case and by the time I got out of the HBOT ... I was in the system. If it works, I'll be able to register in about an hour. Honestly, it probably won't work, but I'll be pleasantly surprised if it does.

Saturday, November 5, 2011


I have often struggled with acceptance over my 35 years of life.

How do I accept things that I do not want (or think I need) in my life? A prime example of this was between 6th and 7th grade, my family moved a couple of counties away. I struggled with acceptance. For the first three years I was there, whenever anyone asked what time I was going home that day, I would say, "I don't know. This is not home for me." I couldn't wait to go back to my old home town. I hated where I lived. It was a difficult thing to swallow that I would not be going back to live there. I struggled with acceptance. Finally, I accepted that it was my home. I began to make friends, best friends.

Then there was the acceptance of Lyme Disease. There were many doctors that just wanted me to accept the multitude of symptoms that I had. They also wanted me to accept the fact that it was all psychological and not a sign of any disease. I wouldn't accept it. I couldn't accept it. Then I sought the help of a phenomenal doctor. He gave me a diagnosis and I accepted it. Lyme Disease. I try not to make it my life, but it is. I live and breath Lyme Disease. If I could, I would open up a "business" that would teach people about Lyme Disease that would help others with Lyme Disease. Though I wouldn't make money doing that, I have to accept that too.

The other part of acceptance is having people accept me for who I am. Most people either like me or they don't. There is no in between. I have a unique personality that annoys some people. In fact, most people don't get me unless they get me. I'm kind of like Lyme Disease in that way. You don't get Lyme unless you get Lyme. And paraphrasing a friend of mine, if they would just get to know you, they'd love you like I do. My friends have accepted me. Acceptance is nice. I like the world accepting me for who I am. And for those that don't, I really shouldn't care. But I do.

December of 1994, I got a letter in the mail. I had always been told that a "huge" package would mean acceptance and a small one would mean rejection. I got the small one. I was crushed. It was the only university I wanted to attend. Then I opened the letter and saw that I was accepted. Myth debunked. Acceptance doesn't just come in big packages. Acceptance sometimes comes in small packages too. I was reminded of this just yesterday when I received another small package. You see, I applied to the local community college to take a couple of courses in the spring. I got a small letter. I was accepted. It's always nice to be accepted.