Saturday, June 22, 2013
I hear people say all the time "I don't know what I would do if......" or "I don't think I could handle that...." Well, it's true, you really don't know what you would do, how you'd behave, or how you would handle a tough situation until you are dealt with it. I think I have finally come to a point where I am comfortable in how I "deal".
Lyme is scary as hell. If you have it, you are either the person who runs to the ER a couple of times a month because you think you are having a heart attack, stroke, or God knows what; or you are the person who just sits in fear at home and "rides it out". I was the ER frequent flyer. I've had more IV's, tests, and radiation from x-rays, CT scans, and MRI's that most people have in 2 or 3 lifetimes. Most of the time, just because I was so scared. I wish like crazy I could take most of that back.....a lesson I learned is that you have to learn how to deal with your symptoms, as crazy as they are. 9 out of 10 times they DON'T constitute a visit to the ER, and the Doctors don't know what to do with you anyway. Better to just "ride them out" when you learn what they are and why they come.
Anyway, I've experienced MOST of the crazy Lyme symptoms and scares. I've treated with oral, injectable, and IV antibiotics and other IV therapies, countless prescriptions, endless supplements in all forms, countless blood draws. Lots of fears, tears, even sometimes a sense of dying, expensive trips, countless Doctors...financial drain and relationship drain. Not to mention driving myself crazy Googling everything. Tough stuff.
Through it all, I have an impeccable diet, I did everything I was supposed to, followed my protocols. listened to my body. Before I go on I have to give credit to my team of Doctors, but especially to my "Dr Jerry" who has never faltered or given up on me, who has put up with endless phone calls/texts/emails/mood swings/desperation. He promised from the beginning he would be there with me until the end. That man keeps his promises, he is a saint straight from God himself.
In the beginning of 2013, I really started looking into more natural approaches to treat, natural healing started to become my main focus, (I am currently taking classes toward a degree in becoming a Naturopathic Practitioner, and I am so excited where this is going to take me!!) We had my PICC line pulled in February, and I have been antibiotic-free since then.....
I feel 90% better. I am sure the previous protocols had a lot to do with how I feel. Many people thought I was giving up too soon on the very intense protocol, but I wasn't giving up at all.
I started praying, a lot....for God's guidance in everything. I felt like my body needed to be "re-built"....so I started a new, less invasive protocol of natural remedies - some to keep Lyme at bay, but the main focus was to repair and rebuild my fragile immune system, and state of mind.....there were many times I would look in the mirror and see a sick person (who didn't look sick, but that is what I saw)...and even until recently I felt insignificant, because of the fact that I battle an illness, don't have a job, my credit has suffered greatly - I thought, "who in their right mind would possibly want someone like ME - I have nothing to offer" - I'm realizing now, that thinking is just flat out ridiculous.
So, honestly? I believe I still have active Lyme, but it is being kept under control, and I rely on Jerry for that part. As far as what I have done for myself in the past 4 months or so? My diet is even more strict - but super healthy. I am rebuilding my immune system by different types of supplements, this stuff is paying off. However, there are a few main things I've done that I attribute most of my rapid recovering to: mind power, faith and exercise.
First, and foremost, my faith in God is the most important part of my life. I talk to Him constantly. He is the reason for all of my successes; by working through my Doctors and guiding me. Then I made a conscious decision to get rid of the negative thinking, things and people in my life, to not listen to negative, not think negative, not read negative, breathe smell or speak negative, and to look in the mirror and see a beautiful, healthy person who has much to offer, big goals that I am working toward, and (if I weren't married) a great catch, and of course a God-fearing woman. I am in NO WAY bragging nor am I self-centered. These are things that God instilled in me and I am GRATEFUL, BLESSED and HUMBLED.
I started out slowly with exercise, maybe 2-3 times a week with mostly stretching, some light weights and no longer than 20-30 minutes, and no virtually no cardio. I am now able to go to the gym 5-6 days a week and my routine is this: stretching, then a moderately intense total body weight training program, then 45 minutes on the treadill, 10 minutes of abdominal workout, more stretching, then done! I am also currently training for a 5k/running & obstacles at the end of this July. I am a little nervous, but excited :)
So, it all comes down to this, God, diet, exercise, and a great, positive attitude, along with some supplements. HUGE impact on my life. Funny, the hardest part is being able to stay positive....because now that I am on a "positive kick", my eyes are being opened to more negative things in my life that I hadn't seen before that I now need to deal with, some I don't want to, but I know I have to and I finally feel strong enough (I hope).
Of course I still have rough days, physically and emotionally. That's just life. But this journey has taught me that the things in life that I used to see as so important (money, power, status, material things) are now very small compared to the little things in life that money can't buy like true love and friendship, happiness that comes from within, faith, a kind heart, truthfulness and integrity is what it's all about. (not saying money isn't nice, lol...it helps of course. And those other things mentioned are nice too, but not to the point where it takes over one's life and "social status" takes over the mind).
I realize, as I sit here and drink my organic morning coffee, that I still have some rough roads ahead and tough decisions to make, but it's time to face them...God's in my corner, so all will work out.
I hope whoever reads this gets something out of it, and God bless you....be well, never ever give up!!!
I apologize if I've rambled or repeated, I'm not going to proof-read, just post my raw material ;)
A special thanks to Jerry and Jeannie...XO
Saturday, November 24, 2012
It's been awhile since I've updated. Mainly because I was in a place that I couldn't seem to pull out of, hopelessness, uncertainty, depression, desperation. I just didn't want to do much of anything!
After speaking with my Doctor, we decided that a PICC line placement was best (basically an IV in the upper arm that feeds through into the superior vena cava). This is because the orals were wreaking havoc on my GI tract, we didn't want any recurring ulcers, my veins were giving out - almost impossible to draw blood. Also my nerve pain was really bad and my nasal staph did not seem to be improving.
I was scared to have a picc line, but one of my greatest friends was with me through it and she has been such a huge help. I've had it for 2 weeks and all is going great!
I'm on a very strong broad spectrum antibiotic, Teflaro (some argue that it is stronger than vancomycin -so my Doctor was not surprised by the scary reaction I had with my first dose). Now I take medication before the infusions to counteract any reactions. 4 days left of Teflaro, and I am feeling pretty remarkable!
Very few symptoms left. I was able to cook Thanksgiving dinner, then shop for 12 hours straight on Black Friday, with no problems! Yay!!
My protocol will be finishing up hydrogen peroxide IV's, then starting the PK protocol (lipid replacement), IVIG to boost my immune system (it's like blood plasma infusions). And a few months of antibiotics while I'm symptom free and then (hopefully) - what I have been waiting and praying for - remission!
It's been a long, very tough road, several hospital stays, very scary and painful symptoms, at some points I wondered if I could survive.
I still have symptoms, but they are very few. Of course this isn't over, my body took a beating and there are plenty of "slow fixes" to deal with. But I know I'm beating this. My faith in God was and is my biggest strength, along with my husband, my Mother, my very best friends, and my amazing doctors, one in particular who refused to let me lose my focus. These people will always be a huge part of my life.
I'm not ready to run alongside my husband in the athletic Savage Race running/obstacle courses, but I'm determined that I will in 2013! I am also 12 months away from my degree in Natural Healing/Nutrition & Personal Fitness!
Again, this isn't over. But I'm looking toward to the future and I like what I see! This journey has been life changing, and still is. I'm excited to start adding more to this blog as far as recipes, diet, nutrition, forms of treatment, and any way I can think of to help others through their journey.
I have been fearful of writing such a positive entry, but not so much now. Always the chance of a relapse :( but I feel pretty confident, and come what may! Most of my fears are gone.
I love you all for reading this and being so caring and supportive! I pray this is real, that the light I see only gets brighter!
Thursday, October 18, 2012
It's been a rough week. My strength and faith have really been tested. It's times like these that I dread, even though I usually come out of it somewhat stronger. Still, the tough days are never easy.
It started the night my husband left for an out-of-town 5 day business trip. My daughter took me to the ER, I wasn't quite sure what was wrong, ended up being a small seizure. I'm thinking and hoping it was because of a sudden substantial increase in Bartonella meds (those herbs can be tough!). I only got 3 hours of sleep in a 36 hour period.
Then, burning in my chest and a significant pain in my right side, liver or gallbladder maybe? Ulcers not healing? More procedures, ultrasound & upper endoscopy. Both were perfect, and I was thrilled to hear my ulcers are healing very well. So, chalk the pains up to "who knows" because when you're dealing with lyme and co-infections, anything goes, really.
Add real life stressors on top of it, and it's sometimes just too much to handle. One of my dearest friends, who is battling lyme as well, was, well is, also going through a rough patch with lyme illness this week, and in many ways we've held each other together. Sometimes, that's the best medicine.
My hydrogen peroxide IV couldn't be done because my veins are exhausted, so we'll try again in a couple days....
All over body pain, my scare at the ER, several tubes of blood, IV's, out patient procedures, lack of sleep and life stress really took a toll this time and I fell pretty hard and my thoughts were not good. The support of my great friends and family, and mostly my faith in God has once again pulled me through.
I don't know where I am in this illness, I don't know how close to remission, I don't think that is a question anyone has an answer to, really. I found another doctor close to home who is also helping me and I think this will make a big difference. Praying so, anyway....
I am able to go to the gym again, no fatigue, tolerable pain, and I've got a good appetite. So once again Janet, forge ahead, press on, keep swimming. As I lie here in the early morning hours writing this on my smartphone, I feel a little stronger of a person than I was last week. I'm convinced that everyone that goes through lyme disease and comes out in victory at the end, are truly Super Heroes. Really! I can see my cape somewhere in the future...
A huge thank you this week to Brittany, Jeannie, Jenny, and always to my Lord & Savior, Jesus Christ....I love you all <3