Monday, June 18, 2012

Continuously learning from this Lyme thing...

Well, today I found out that my little sweet niece has Lyme Disease. She is just under 2 years old...the CUTEST thing- the one you saw in the pictures from DC.

She got bit by a tick earlier this year in southern Oregon and after so much sister finally got some answers! Just being involved in her process of going to multiple doctors and multiple doctors being COMPLETE IDIOTS- I was reminded of how little this world knows about Lyme.

As much as I HATE this disease and everything that goes with it...I'm so grateful for the knowledge I've gained. If anything, I'm glad I've gone through this so that little Scarlet doesn't go through life with Lyme and get sicker and sicker until it's too late, or she has YEARS of treatment. Thank goodness though, I have been through what I've been through, my family knows so much now, and my sister knew to not brush it off, and trust doctors who said, "We don't have Lyme in this area", or a bunch of other COMPLETE moronicness. Because of what Clay and I have gone through...Scarlet can get treated, get better, and live a wonderful life!

It does makes me sad that she has it though, and that she has to be treated at all. It makes me so mad that there are tiny bugs that can give you diseases that can just change your life in an instant. It makes me LIVID that there are big headed doctors that think they know everything and don't listen or care...and that there isn't more publicity or knowledge on this topic. The whole thing exhausts me really. It's exhausting to tell people, "GET TESTED" or "GET ON ANTIBIOTICS" or, "I don't eat Gluten or sugar because I have Lyme"...and everytime I say these things people give me questioning, ehhh...maybe. It kills me. Clay and I have both decided so many times if we ever came upon a lot of money, we would try so hard to increase lyme awareness and research. It's a freaking epidemic, ALL around us. People need to be aware. It can be prevented. It can be fixed! And unfortunately there are only a small handful of doctors who know how to properly treat this...meaning it's super hard to get appointments, travel, etc.

All this being said though, I feel like maybe that's the reason I got this disease. Among so many lessons I've learned of patience, perspective, judging, perseverance, and a lot of other stuff...I feel like I'm just one of those people that isn't embarrassed to say I have a disease...and talk about it and be open about it. Even though sometimes it IS hard...I just can't bear the thought of me NOT doing this, and letting people get sick...when I could've helped give them knowledge. I hope that's not coming off as big headed or something, like I think I have this big calling or anything. I don't. I just feel like I'm capable, so I need to. I honestly feel like I'd be a hypocrite if I didn't make people more aware. Since I have such issues with the fact that people aren't!

Anyway, I sure hope I can help SOME people in this small way of sharing on my blog. Be smart when camping! The bugs are plentiful this year. I got this from my doctor's website:

Any tick that is attached to the skin should be removed carefully and quickly using the following guidelines:
  • Using small tweezers, grasp the head of the tick at the skin and hold firmly without squishing it, and pull STRAIGHT OUT without twisting or turning it.  There may be some resistance as ticks secrete a cement- like substance that allows them a tight hold on the skin site of attachment.
  • Place the tick in a small jar and save to send to Igenex, Inc. for PCR/DNA testing of the tick for Lyme Disease.
  • NEVER squeeze or burn a tick.
  • NEVER use any ointments at the site of the tick bite.
  • Clean the tick bite site thoroughly with alcohol.
  • Phone your physician and make an appointment immediately.
  • Monitor the site of the tick bite and note any strange rashes.
  • Take a magic marker and draw an outline around the edge of the rash so the Lyme Literate physician can see the extent of the rash. The marker won't wear off in a shower if you have to wait to see the physician.
  • Take a picture of the rash with your camera, and bring the camera with you to the doctor's office so that if the rash fades, the physician can still assess it.
  • Rashes can also occur on the body other than at the site of the tick bite so make note of these as well.
  • Fleas, mosquitoes, sand flies, and probably any biting insect may also transmit Lyme Disease, so if you have suspicious swelling after an insect bite, take a picture of it and bring that picture to a Lyme Literate doctor's office.
Just a note...even if the tick comes back negative, you could still have Lyme. Happened to Scarlet. They only test like...ONE strain of lyme on the if you got some other wouldn't be picked up on the tick, you know? So in my that I know this, the testing of the tick is kind of ridiculous...unless you really can't find a doctor that will test you.

I know I've said this before, but symptoms of Lyme include a fever/flu within a couple weeks of getting bit, achey joints, and fatigue. I'd say those are the main ones to watch for. 

Have a nice day! 


Megan and Greg said...

Yep, those are ALL the symptoms Scarlet has. Every single one. Nothing else. Greg was all upset today thinking if that stupid first doctor would have listened to me and taken me seriously, she would've been treated within 24 hours, but she brushed me off. And to think what would've been? Maybe saving all the pain of Scarlet, not to mention emotional pain for Greg and I, and a serious amount of time and monetary expense to come. I don't need to tell you. But it is a horrible thought, "Oh man, if only that doctor wasn't so stupid and would've treated her like I asked her to." I'm glad you're not embarrassed to say you have a disease. I need to get over it. I feel really wierd talking about it with ANYONE outside our family, because it is so obvious how no one gets it. Even people that THINK they get it, 'cause they have it or know someone that does- they still don't get it all. I don't think you're big headed. I think it's great you are so passionate about it. How could you not be? Greg and I are just wondering what the next year will bring.

Aliese the Writer said...

I just caught up on a million of your blogs. Your trip to D.C. sounds so fun! I'm so glad you got to go and have fun there. And you got to see the actual Hogwarts robe that Daniel Radcliffe wore! That is so amazing! I would be so excited if I got to see that. I love your headband things. I don't think her's is cuter at all. Yours are adorable. The BBQ sounds so fun and you look so pretty in that picture. I loved your post about the goals. It made me feel so good because I feel like that if I don't write things down. I feel guilty and so lazy. I just need to make goals. And I so would for this summer, but I'm traveling so much! So, I think I'll make a goal to do a lot of reading and writing. Thanks for all the posts! Love you!


LOVE YOU. And I think you should write in to Ellen. Seriously.

Natalie | Mrs. Janney | said...

I got Lyme Disease about 3 years ago. I didn't see the tick, but I know when I noticed the bite (which was right away since it was on my neck). I had the bite on Thursday and by Saturday night, I had a fever, horrible headache, vomited, and started getting the rash.

Thankfully the doctors at Urgent Care recognized it and put me on Doxy RIGHT away.

I'm a lucky one. I got treated right away because I had doctors that knew their stuff. But when I told my primary care doctor later, he didn't believe me. He doesn't think I had Lyme Disease because my test came back negative (which is really common).

Dumb doctors!! I am so glad you and Clay are doing better. And I will pray that Scarlet gets better quickly.

Jenni said...

Oh my goodness. I just cannot believe this. Scarlet... poor baby. Poor poor baby. It really breaks my heart. I feel for Megan so much. I would have so much hate and sadness if the doctor blew me off like that when something could have been done. Ughhhh. I'm sure everyone is feeling really thankful for you and Clay right now. Isn't it amazing how everything has a purpose? Like you having this disease, like you said- now Scarlet can receive the proper treatment. What a blessing. I hope the treatment goes smoothly for them. They're so lucky to have you and Clay as a resource. And I'm with Amy, write ELLEN!

Shannon said...

I can't believe it. I didn't think that we had a problem in our area. We are definitely more careful now.

katy said...

Sad for little Scarlet and family. So how did scarlet finally get diagnosed? I have been tested 5 times in 2 different labs. They all came back negative. I still think I probably have it. I have this crazy theory(that bugs people)that almost everyone has it and everyone is effected differently from it. I think some people are hardly effected and some people die,or have ms, or whatever else. I read this article from a doctor that kind of thought the same thing. Anyway, I want to know how she finally got diagnosed because I have tried requesting labs and doctors do not like that at all. It's lame. I tell anyone I know with a disease that could be lyme to watch that under our skin.

Grandma, Nonnie said...

So sorry to her that, I have been praying every day for her and for the results to help us know for sure what is going on. I don't know what happens for her from here, but I hope it won't be tooo hard and I think I would sue the pants off that doctor in Medford. I hope she is taught a lesson somehow. She needs one, stupid fool. I love you and I am so grateful you are who you are and can help Megan and Greg through this. Hugs

Sharon/Mom/ Grandma said...

I definitly do not think you are big headed. I think you are brave and amazing. I am so grateful Megan and Greg have you. I am so grateful you are so vocal. I talk about it to anyone that I think has Lyme, and sad to say most don't take me seriously. One lady did though. I love you!!!

Sharon/Mom/ Grandma said...

I definitly do not think you are big headed. I think you are brave and amazing. I am so grateful Megan and Greg have you. I am so grateful you are so vocal. I talk about it to anyone that I think has Lyme, and sad to say most don't take me seriously. One lady did though. I love you!!!

HeidiT said...

One thing that I have learned with dealing with all of Camden's medical issues is that it is a great opportunity to raise awareness and be a support to others who are going through similar circumstances. I think it is great that you are so vocal about what you have been through.

*Stephanie Lance* said...

NO WAY?!?! Poor Scarlet!! That is so sad!! Thank you for making us ALL aware of this!! It's a good thing to be aware of a watch out for and get treatment right away etc! After you had been posting about ticks and how dangerous they are and such I have been meaning to learn how to remove one if I ever needed to but I always forget by the time I am done reading your blog so I am SO glad you posted that! Thank you!! I have also been meaning to write on your other posts! You are BEAUTIFUL!!! Seriously! I LOVE your hair and EVERYTHING!! You are sooooo pretty!!! Love and MISS you!!!