Where has the time gone? I cannot believe its been almost 10 months since I’ve posted here. I think I have finally pulled my head out from under the covers. So much has happened…where do I begin?
First, in March of 2020 the first negative Lyme’s test came into my life. What does that mean? Well, that likely 90% of the Lymes was gone! Cheers to that! We were hoping my body would clean up the remaining 10%. If you caught that, I said “hoping”. Back to that in a minute. The additional negative test was that the anaplasmosis was gone too. Prayers can be answered.
Of course COVID hit in March, and I’m pretty sure I just pulled the covers over my head because I feel like I haven’t been living my best life since then! (Well…that’s my excuse….I’m sure I could come up with a better one if I had more time.)
With both the Lyme’s and the anaplasmosis gone, one would think I would be jumping for joy and feeling better. However, I was feeling worse than when I started. How could that be?
Well, the additional lab tests showed my immune system was still going crazy in overdrive, that I had a parasite in my system, my pituitary gland was out of sync and two other blood tests to show off the charts inflammation in my body. My doctor said he knew I wasn’t lying when I said I didn’t feel good because the test results prove it! Again, the same old question of “Now what?”
Back to the 10% Lymes remaining in my system. If my body isn’t able to clear out the last bit of Lymes, I could still have symptoms and with my body dealing with high inflammation, my immune system is going to work overtime all the time. Hence, why I’m not feeling well. In addition, my doctor said this could point to another tick borne illness called Babesia. This is a parasite that affects the red blood cells. Good news…I’ve been getting treated for Babesia…and I’m FEELING BETTER! I still need to work through the inflammation and hormone issues, but a little relief is like a little bit of heaven. Amen!
What have I learned the last 10 months? Lyme’s has substantially changed my life. COVID has substantially changed everyone’s lives. It’s how we react that will determine the outcome! That’s why I decided to pull back the covers and take a peak into what’s ahead. Its scary but I’m doing it with my head high and my heart filled with gratitude! We can do this together! I promise.
How can it be Fall already? Kids back in school, leaves falling from the trees, and football is here!
As promised (way back in June) I want to provide an update on my latest diagnosis. Well, here goes! I have TWO tick borne illnesses. Yes, you heard that right – TWO! I have Lyme’s and Anaplasmosis. Both are illnesses from wood ticks. (You can google either one). While I don’t know when I was infected with either one, I’m guessing it wasn’t from the same tick so the saying 2 for 1 doesn’t quite apply… although its kind of fun to say!
Since June, I have been getting treated for both and now know how good I can actually feel. The treatment has been slow but beneficial. I feel like I’m getting my life back a little bit at a time. I am still limited with physical activity and do needs naps on occasion BUT it’s SO MUCH better than it has been in years!!
Everyday I say “I love my life!” And its so true! I am so grateful for every day. So, when the rough days come, I’m more fully aware of my body and my limitations, but now I know, with 100% certainty, that the rough days will not last long. What a wonderful concept!
What a wonderful life! As Self Care Cove says…”You don’t have to be perfect to be pretty damn amazing.”
Somedays you just want to stay in bed! Today was one of those days for me. I was informed yesterday that what I’ve been treating (Lymes) and the treatment may not have been 100% on target. What? No seriously, what?? My first thought was “Has all the time, money and effort for the last 3.5 years been useless?” Probably not because I am feeling better, yet I’m still not better. So, while that does make sense, the news came as quite a shock.
The facet of tears started yesterday and continued this morning as I laid in bed. Admittingly, I didn’t think I was going to get out of my bed today. I’m angry and I’m sad and I’m frustrated. I may have lost a lot of time, money and effort over the past several years because the treatment was not exactly correct. I knew, as I laid in bed this morning, I needed to look at the positive side that in 6 months I could be a brand-new person. I could feel like a million dollars. That’s what I’ve been praying for! I want to feel better and now I may have that opportunity! That’s something to celebrate! I could have my normal life back. I could be active every day without struggle. I could stop taking medicine every day. I could wake up and jump out of bed. No more pep talks to myself about getting through the day. Yes, that’s all such good news!!
But I couldn’t get myself to that place this morning so I stayed in bed and continued to cry. My attitude didn’t change until a friend wiped away my tears and said, “Lori, look at this as a breakthrough! We may not have known any of this before and now today we do. You’ve been saying you want to feel better, right? Well, in 6 months, you will be!” At first, I struggled to see it that way! But after letting it sink in, I stopped crying, I pulled myself out of bed and I thought to myself… “Oh my goodness, in 6 months I WILL BE BETTER!” Yes, this is a breakthrough!
I will know more after some testing this month. And while I may still have a little pity party for myself today (my sister said that was ok to do), I will take this news and know with certainty there is a light at the end of this tunnel!
How many times do you ponder what to do? You take hours, days, sometimes weeks to decide what to do. Whether it be about what to wear in the morning, what route to take to work, what to make for dinner or big ticket items like what career to pursue, what doctor to see, what trip to take, what to do to be healthier, to lose weight, to eat better. We all have decisions to make every day! And yes, decisions can be scary and they can be exhilarating all at the same time.
It’s not enjoyable to be stuck. It’s not fun to worry about what you should do or what you should not do. I recently spoke with someone who is dealing with Lyme’s. He is sick, he’s tired, he’s tried several different options and now he’s immovable. He cannot decide which path to take. Both paths have advantages and disadvantages. Both paths have scary options and desired options. Both paths have unknown results and consequences. He cannot take both paths, so I said pick one, any one, just pick! He cannot gain any ground by sitting and thinking about it. Yes, it may not be the right decision, but it’s a decision. You can always make a new decision. It could also be the best decision, it’s still a decision. It’s a step forward; it’s putting everything into motion, its moving ahead….its getting unstuck!
Once you decide, you will feel like you’ve already won! You are more than half way there by just deciding! Deciding is the first step in learning, in knowing, in finding the desired outcome. You have 100% control. I encourage you to look at your pending decisions, look at your options, review all possible scenarios, but whatever you do, just decide!
What did you decide to do today?
Summer is unofficially here – my girls are almost done with school and road construction has started! Enjoying the warmer weather makes my commute to and from work so much more satisfying when I can have the windows down and the sunroof open!
Update on my treatment: I’m one month complete and have to report it’s been going much better than expected! I definitely have my tough days, but overall, its been manageable. I still need 1-2 naps a day (yes, sleeping in my car at work is not beneath me) yet feel my energy level is slightly improving. Hoping round two this month brings even better results!
As some may gather from my book and this blog, I am a fighter. I want to be healthy. I will do whatever I can to have a good quality of life, and ultimately, whatever I can do to improve my health. I’ve learned that not everyone has this same attitude. I’ve learned some people, while they value health and life (and may have very different circumstances than I) are not willing to go the extra mile to maintain it, improve it or just keep it. The hard part for me is I learned this recently from my father. His health is failing. He has many problems including diabetes, heart disease and high blood pressure as well as not being able to get around without a wheelchair and has constant pain in his legs and feet. This past week he was admitted to the hospital with kidney failure. He was given the option of dialysis, but he refused. He has now been admitted to hospice. He has made the tough decision to not fight for his health, for his life. I do understand his health isn’t good. What’s so saddening for me is he has been my biggest cheerleader when it comes to my health, yet he feels so differently about his. This is a tough lesson to learn especially when it comes directly from my father. I will have to accept his decision, because it is his to make, but I will reiterate that I believe yours (and his) health matters, and its worth fighting for!
Finally, please keep my dad, Tom, in your prayers for his continued comfort and peace.
I feel like I’ve been on a bit of a sabbatical from here, or maybe life in general, so its good to be back! While I’ve been away, life did throw all sorts of twists and turns at me, but I can confidently say my navigation skills have been challenged and I think they are almost perfected now!
The distractions have been good; however, they have caused me to delay starting a new treatment. The treatment is a doozy, so I’ve been prolonging the start for a couple of weeks now. The treatment consists of 20 vials of Lyme’s DNA which I take one vial every three days for the next two months. The vials become stronger as I continue the treatment. The positive side is this will help build up my immune system to fight Lyme’s now and in the future. The less positive aspect is I am now putting Lyme’s DNA into my body. Yikes! More Lyme’s means more symptoms. More symptoms mean not feeling well. Not feeling well means I really need to look on the bright side! Yep, this will make me feel better in the long run! So with a queasy stomach, a heavy heart, a quick prayer for strength and tears in my eyes, I took my first vial this morning.
Happy to report, I’m still standing (of course its still morning!) Admittedly, I am proud of myself for putting my big girl pants on today and taking the plunge! High five! As I continue with the treatment, I’m going to wake up every day saying I feel terrific! Positive mind, positive attitude, positive results!
My encouragement to you….take time today, this week, or this month to improve and celebrate your health….take it from me….It really is worth it!
I love the fall season in Minnesota with the colorful leaves and the fall decorations like big spiders on people’s doors or scary things hanging from the entryways! Just love it. Although it also means we are coming upon “Why do I live here season?” Don’t get me wrong- I enjoy winter; however, I sometimes think I should live somewhere warmer and just enjoy winter from afar! A girl can dream!
I started treatment for Lyme’s Disease two weeks ago and treatment for SIBO this past Monday. Honestly, I have to admit – IT IS KICKING MY BUTT! My doctor said both treatments could make me feel lousy! Lousy is an understatement. I generally have pretty high tolerance for anything but when my daughters have to put me to bed at nights, that’s when I know its been a rough road! Battling with severe fatigue and abdominal pain, flu-like symptoms, RLS, blurred vision, night sweats, etc, etc, etc. Remember this is only the physical side effects, my emotional and mental state is for another blog post!
I am still trying to find humor in all of this which was the case when I made my dad chuckle the other night when I talked to him. He said he was worried about me. So I told him I was worried about me too! Thanks Dad! A little laughter goes a long way especially since this has been the toughest week yet.
On the bright side….. I hope I turned the corner today. I was able to shower and get ready this morning without thinking how much time do I have to nap before starting my day! I’m still severely fatigued, but a little more energy and a little less of everything else! As I say in my book…I may not be where I want to be, but I’m doing the best I can right now!
“When life gets hard, challenge yourself to be stronger” –Unknown
I wish you a joy filled day today and may your Halloween be filled with lots of scary stories, chocolate candy and little smiles as the children run up to your door.
It’s Lyme Disease.
I suspected I had Lyme’s for quite some time but now I have the proof. I have to admit that after finding out, I had many days of sadness yet I was also grateful for knowing. It’s definitely been mixed emotions. We also found SIBO (small intestinal bacterial overgrowth) and new food allergies and sensitivities– I will comment on those more later!
According to Dr. Mark Hyman in 7 Strategies to Tackle Lyme Disease, Lyme disease is caused by the bacterium Borrelia burgdorferi by an infected tick transmitting the virus to humans. Borrelia burgdorferi can affect the entire body, hiding from and suppressing one’s natural immune system. “Lyme infections literally hijack your immune system like AIDS.” He also indicates its one of the most challenging and difficult situations in his practice because it mimics other illnesses.
“It isn’t the mountains ahead to climb that wear you out, its the pebble in your shoe.” – Muhammad Ali
This may be the pebble. This may just be the underlying issue. If so, I’m so elated because now I can start paving my road to recovery!
I’m grateful for Dr. Litchy. I’m grateful for his patience and expertise. I’m grateful for now knowing.
May you be blessed in your days too!
Since I’ve made the appointment with the U of M, I’ve had medical professionals tell me to seek out an Immunologist and Infectious Disease doctors. In addition, I’ve been told to request testing for issues like Celiac, Lyme’s Disease, kidney disease, lupus and food sensitiveness.
Disappointingly, I found out the clinic would not refer me so I called the Mayo myself. After several questions, they said they could not offer me an appointment because they could not do anything else for me then what has already been done. Lots of tears shed!
I informed my OB/GYN so he gave me a list of doctors to call for internal medicine. After 10 doctors called (all from referrals of other clinics), the doctors were either not accepting new patients, were retired or did not accept insurance. More tears!
My sister then suggested (thanks Shelly) I call the U of M. I took her advice and managed to find a doctor to take my case. My first appointment is May 23, 2014.