A Year Later

A Year later….

So tomorrow ( August 31) is exactly 1 year since I was admitted into Jefferson University Hospital- Philadelphia, PA. That is a memory I wish I could forget but one I will always remember- It made me the person that I am today.. A Lyme Warrior!

That night I could barely walk, in so much pain, and so weak. Spinal tap, blood work, and IVs.. Which then led to a Piccline.. or 3  of antibiotics. I was scared and unsure how I was ever going to be “ me” again.  Crying that school was starting this week and I need to get better to get back to my students.. little did I know I wouldn’t be teaching my students this year.. but teaching myself.  Teaching myself to be patient and to walk and use the right side of my body again. To teach my brain to comprehend and be able to read. To teach myself- to appreciate all that I had in life because in the blink of an eye your plans and life could change just like that.

So where am I a year later….

Going back to work!! Yay! I did have to step away from my preschool disabled job this year due to the physical aspect as well and the germs ( my immune system is not that great).. but I am still teaching- and that is all that matters!!

Overall my last 2 doctors’ visits have not been great but could definitely be worse.  My CD 57 number was 37 which means I could relapse.. COULD is the word that I am holding on to. I am trying to stay as positive as I can!

I had 2 opinions and both were the same outcome. My vitamin D level is at 22 ( needs to be at 30). I am surprised so low b/c I do drink milk and am in the sun.. a lot! SO I need to start those supplements. Also, My thyroid numbers aren’t good either. I am trying the natural approach with that before starting that medicine. I personally think that all of this is messed up b/c of all the medicine I have been on and what my body has been through.

I have also been going to an ENT due to ear problems. We found out that I have severe pressure in my right ear and hearing loss ( a hearing test was preformed). I went to my integrative medicine dr. today and he said that my mycoplasma coinfection was back.. great! Or maybe it never went away b/c through the muscle test it is in my ear. But anyway.. its here. The weird part about this all is that my very first symptom (my ear) last summer was this ear and this ear pain.. Maybe the mycoplasma was my first co-infection and is the last to go? I am starting the series medicine now so we will see in a few weeks if it is gone.

Physically.. my walking has been great! I am working out every day with my PT in the wellness program. Lifting 6 lb weights and walking on the TREDMILL at speed 3.2- this is a huge deal for me! I am able to ride my bike and drive my car ( locally). The first time I drove to Target by myself I didn’t want to leave- the independence felt so good! So- is my leg back to normal? Not yet.  As, I am sitting here my leg feels like it is ice cold and numb- a feeling I guess I will have for a while due to the nerve damage. My leg and arm fall asleep a few times throughout the day.. But I am learning to deal and just live my life with it.  I did stop the Neurotin ( my memory/concentration has been bad so wanted to see if it had anything to do with the meds.) I am still on the Celebrex for joint pain though. When I try to stop that- boy can I tell!!

Overall… just trying to live my life with my wonderful husband. My energy is not the same as it was but I have been pushing though activities. I am learning not to let the Lyme win. I set my alarm clock every day- make myself get up and go!. I make sure that I go out with friends to party. Wear that makeup and cute outfit. Go to the beach. Waverun.. swim in the ocean! – It is always easier to lay in bed and wear my pjs.. but I just feel I am letting the Lyme win.. and I REFUSE to let that happen. So I am living my 28 year old life the best that I can!

In closing, as tears run down my face as I am typing… I just want to say THANK YOU! THANK YOU! THANK YOU! To God, My husband, My family, My friends, My doctors & Therapists, My Lymies- and all of you who read and support my blog though prayers and kind words.. Thank you. Without ALL of you- I KNOW I couldn’t have gotten though this past year. Thank you from the bottom of my heart. Let’s Raise Awareness for Lyme Disease!!!!! <3 

Doctors Doctors Doctors

So what has been going since this Piccline has been out?

I ended up getting sick. I guess this makes sense since I was on about 5 antibiotics for months and then just stopped. I ended up having a bad sore throat and bad ear pain/pressure. I went and saw my primary doctor who thought I  probably have Strep Throat or Mono. I felt so sick that I could barely get out of bed..

I then made an appoint with my Lyme Dr to see if it was my Lyme flaring up. He thought I may have Mono too.. So I went and had the Mono blood test- good news- no mono.. but I am still sick. I also saw my integrative medicine doctor who said my Lyme was in remission but I am still fighting off metals: mercury and lead.

I then went and saw an ENT who said my Eustachian Tubes were completely blocked. He then said steroids would be the best thing to open up my ears. Us Lymies know that steroids and Lyme are NOT a good combination. But I really had no choice- I was losing my hearing and in SO much pain. I ended up taking the steroids and the ear pain did get better. I am getting allergy testing done this week. It has been about 4 weeks that I have been fighting this cold/virus and now I have a deep cough.

Overall, I think that it is just hard to fight anything right now because my immune system is so compromised. I am continuing to workout out in the wellness program, eat well, taking supplements and try to heal my body.

I did meet with my Lyme doctor who told me that my c6peptide number was low! YAY! I was at 1.60 in January and now am at negative 0.70! I had more blood work taken on July 24.. I will find out how my numbers are on August 16- please pray that my number is still low! I also got a CD57 blood test done as well. Very nervous but hopeful for good results!

I also saw my neurologist and he was super impressed with how far I have come. After talking to him I am starting to come off of my Neurotin. I just want to try to come off of as many meds as I can- but stay on all naturals because I know I can't be off of everything.

So.. how have I been doing? I still have the cold and at times still very exhausted. I am able to do many more things now but then I am tired- I need breaks and a 20-40 minute nap everyday. I did also have 1 scary episode. This Friday for about an hour and 15 minutes my leg went all completely numb and tingly on me. I had trouble walking again. I did lay down and put my tens unit on me and had to calm down because as you can imagine I was a hysterical mess. I did have workout in the wellness program extra hard that week and that morning so maybe that caused something but I do not know. Maybe because I just stopped the Neurotin? I have been fine since then but I am scared that these flare ups are going to happen. Are they always going to happen?

I continue to think positive and kick Lyme Butt!!

Good News- Going back to teaching in September after missing a whole school year! I am so excited and so blessed to be able to live my life again! Thank you for all of your support and prayers.