March Part 1 – Big Decisions

Unknown

Once again, I apologize, I have been slacking on updating you all. I have some negative news, some very positive news, and I have made a very big decision about my future course of treatment.
Where I left off, for those who do not follow me, (you should, because I am awesome), I started my “bomb day” in the morning, and then heading off to biomagnetic therapy in the early afternoon.
When it was time to leave for my appointment, I was in a little ball on the couch, and having my Dad help make sure I got into his truck. I still need rides going to any place that is past my 15 minute radius, which really stinks as I hate relying on other people. Ugh.
Back on topic… I could barely keep my eyes open, and all I could see was black purple and blue squiggly lines. I had a barf bag in hand…it was not a pretty afternoon.
Most people would probably be terrified on these days, but I am so used to them that it doesn’t even phase me. This too shall pass? I don’t know.

 It is what it is.
The biomagnetic therapy seemed to help. I felt a lot better after my session, and was even able to pick up take out for dinner on my way home.
I had a “blue sky” day on my first day of Coartem. I started the day off by going out to breakfast with Dave’s family. It was really loud and busy in there, so my head got jumbled up and I get very “fuzzy”, but I was fine. I then went with Dave to two stores on our way home. That is pretty miraculous for me. AND THEN!!!, I got a decent amount of cleaning done when I got home. This was a very good day for me.
Of course, there seems to always be a punishment for having any sort of a better day. I have fallen once (luckily not a bad one), I have had a lot of foggy days.
My first, someone said, “good morning” to me, and instead of saying it back I replied, “good night!” To be fair, it was a Monday. I have definitely been out of focus. Needless to say, I haven’t gotten a whole lot done at work. Sorry boss if you are reading this…
At night, and throughout the past week or so, I have had some tics. These aren’t quite as bad, I guess I would describe it as cringing, and I had a few good yells at night.
I have taken a few evening naps, but I still seem to be doing really well on staying on a “normal” schedule. I think trying to get out there and do things is completely exhausting and overwhelming on my body.
That is okay though, I still have a very rewarding and accomplished feeling pushing though and doing what once seemed completely impossible and off the table for anything I would ever be able to do again.

 

I had another blue sky day since I last wrote! Two blue sky days. Wow. I made two quick trips to the grocery store, a coffee stop, went to the bank and pharmacy, swept vacuumed, did some some dishes, cleaned the tub and washed some of our wall trim.. all while dealing with the neediest high maintenance brat puppy ever. Seriously. Wow.
Afterward, my legs felt like complete jello, and everything to me seemed dark, so I knew it was time to rest. I really wanted to use my recumbent bike that evening, but that was a nap day, and I really did a lot. I didn’t feel all that guilty for taking the rest of the evening off.
I don’t know if it is my treatment, methylcobalin shots again, or my new biomagnetic therapy but something is starting to work.

 

This truly shows having this disease.. well any chronic illness, you can have significant improvements in a day, then completely fall apart. I just hold onto those good moments, keep positive more will come, and you need to just live day by day. It will make you crazy thinking of the future.

 

Dave and I are trying a new diet plan. We have actually been eating vegan. I thought Dave wouldn’t make it a week, but he has been so good, I am really proud of him. I think having a partner in trying a new diet, workout, or anything of the sort helps. It makes you more accountable.

 

I have lost 6 pounds (losing weight wasn’t the goal but I am not hurt by this at all 😉 ). I am way less bloaty, and I no longer have horrific stabbing stomach pains.
I still haven’t mastered the art of tofu, haha. I am realizing that there are so many options for meals. Our favorite is a meal is almost like spaghetti, only it is filled with veggies, you don’t even need more miss pasta, so it is a lot healthier and lighter.

 

Now the big decision. I have decided that I am no longer going to go to my LLMD in DC. This was a huge and hard decision for me. My mind was all over the place, and a big part of it was a mental thing that I would be leaving “THE” Lyme doctor. If that makes sense.

 

I haven’t taken this decision lightly, but a piece of me knows that the clinic has done everything they can for me. I have not been happy and very frusterated for a long time for a number of reasons that I will not get into. I do not want to and will not bash them in any way, I really did need them very badly when I was at my worst. It was life changing for me during that point in time.

 

I do owe them so much, as I am no longer in the place I was at, basically completely useless, needing Dave to push me around in a wheelchair, bathe me… the list goes on. I have so much appreciation and gratitude towards them.

 

With that being said, I have altered some protocols on my own, lessening them as needed, and I just have a negative frame of mind now, and I have a positive outlook and better vibes with my local naturopath that has helped me along the way throughout so far, a 3 ½ year journey.
As of right now, it has been nearly two years without significant changes. I have had a few blue sky days, but it really isn’t determined what it is from. My tweaked protocols, the biomagnetic therapy? My immune system working better? There are so many factors.

 

I will tell you, with and having Lyme, I see so many people give up very quickly with doctors when they do not see immediate results. With this illness, all I can say is patience is a virtue. You need to have faith in your doctor and give it time. Do not give up. Give your doctor a chance. This is not a sprint, it is a long frickin marathon.

 

For me unfortunately, after this amount of time (YEARS), I think it is just time to move on. Something is still missing, I am sure of it, and I like I mentioned, I personally believe I have gotten all I can out of the clinic.

 

I am not giving up, folks I promise you, but as Einstein once said said, “Insanity is doing the same thing over and over again and expecting different results.”

 

My recent appointment with Dr S got me feeling more positive, and honestly I think it will be a trial and error for my treatment, which is okay. I really think he will find the right combination that will work for me.

 

He truly listens and takes his time, putting great thought into what he thinks will be best. I am not shy around him, and he doesn’t beat around the bush with telling me the truth. I am also optimistic about my biomagnetic therapy treatments.
His concern as of right now, looking at several of my blood work papers, he wants to figure out what my liver is doing wrong. It is functioning poorly.
A test suggested is a urine test that tells you about nutrients, liver function, energy production, brain chemistry, and gut infections. On point, Dr S, let’s get this all figured out.

 

This is still a scary moment for me, I will not lie. I still have not picked up the phone to cancel my appointment. I need to, and I think that phone call will be today.
This is a big step, I need to do this for me, I need to be brave, and transition to what may be completely life altering for the better (I am hoping for some level of remission for me), or for the worst.

 

I really truly believe this is the right path for me. Say a prayer, wish me luck. I am officially starting a brand new path on my road to recovery.

And of course, you get a picture of Miss Olive, snuggling with her Mumma.  🙂 12801672_10153493275242404_4837392389664443509_n

11 thoughts on “March Part 1 – Big Decisions

  1. You can do this! So hard to make a tough decision like that but the feeling you have in your gut is the right one. Time to try something new. This sounds like the right next step and I am sending you good vibes! Frickin’ marathon indeed. My freak out is that I’m about to start malarone for coinfections, but I’m excited for my chance to try something new after many months of no change. So here’s to new paths for Lyme disease. Wishing you all the best and looking forward to your next update. XO

    • Good luck! I actually didn’t have a huge reaction to malarone. Hopefully you won’t either. Make sure you have it with a fatty snack. It gives me an excuse to eat peanut butter out of the jar lol

  2. Dear Kimmie

    I have been following your posts for a long time. My daughter Jesika’s journey was the same as yours, even including the DC dr.and she too recently decided four years with him was enough for her and she pursued other doctors where she lived in florida. I write today to share the news that she passed away on saturday. I share this not to burden you but merely to reach out and to thank you. Your posts have been an inspiration to me, they have helped me understand the un-understandable. I was able to share parts with her that were so very similar and it helped her. I was always able to say, oh kimmie cakes says that is normal 🙂 And so I say thank you, thank you for sharing your journey and may God bless you Dont every forget the blue skies, with all my love!!

    • I have it set to for approval for new writers. I am so very sorry for your loss, it brings me to tears. I am glad in some tiny way I helped you both out. Prayers to you and your family. Sending my love.

    • So sorry for your loss. ❤ My heart goes out to you and your family. It seems there is not enough time to try everything. I had a traditional chinese med doc on a university board that wanted me to strictly work on the immune system but I went and tried lots of antibiotics/ etc. Now…seems things are worse but not giving up. I wish you peace, love and my heartfelt sympathy. I am so sorry but so glad to see you post

  3. Good luck. Glad for you. I am currently doing Tesla’s EFS-100 which is static frequency machine, homemade fermented vegetables, hot/cold showers, tumeric w/black pepper.,good chelation program….etc after years with a llmd who for me ran it’s course as well. Your posts are always so good, You will do well working on immune sysytem and keeping good tabs on liver, etc. Concerned about liver….but I bet after a break and some good detox things will get back to normal 🙂

  4. It is important to follow your instincts, you know the best what you need. I send you healing thougths. You are really brave and an inspiration. Chronic illness are so difficult to live with. My experience was a good decision to quit my lyme specialist. It was not doing anything. I felt better at the beginning. Which was probably because of the change in the diet. But after I just got worse and worse. I finnaly found what I have with my search on the internet. I have Ehlers-Danlos Syndrome. Continue to keep us updated I love to know how you are doing

  5. I recently left J’s office too. I feel very similar about it, as if I got everything I could out of them. I’m now addressing lingnering MTHFR issues with a doc closer to me (I’m in TX). We have to do what’s right and best for our bodies. I wish you all the best 💚

    I contacted you back when I first got diagnosed and talking with you a little helped so much. Keep fighting the good fight 💚

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s