Working my way back (part 3 of 3)

Never Give UpI am now 9 months into treatment, and am sad to say that I am not healed and not better. However, I am getting better at hiding my pain, living a lie and saying that I am “ok,” all while holding back my tears. Physically, I hurt in ways that I cannot even begin to describe! While some days are better than others, my headaches, cramps, body aches, and fatigue are the worst they have ever been. I feel as though lightening shoots through my central nervous system with even the littlest amount of stress. My blood pressure has gotten better, which is a huge improvement, which I am so thankful for! My tachycardia is off-the-charts terrible right now. I lie awake some nights feeling like I have an elephant on my chest and my heart rate can be as high as 150-160. It has recently started plummeting from that extreme high to an extreme low of 50. It is difficult to breathe, likely due to one of the co-infections that I have, called Babesia. I can’t regulate my body temperature; it could be 90 degrees and I am still shivering. I sleep with ice packs on various parts of my body most of the time. I have four identified co-infections in addition to Lyme and each of those adds more complications and makes it more difficult to treat. I’ve spent days and weeks in bed at times. I’ve had to go down the stairs on my bottom some days. I have to limit my driving and cannot drive at night, because my field vision is terrible and my peripheral vision in my right eye is gone! I have new pain that I didn’t have before and some days, I’m not sure if treating is easier than living with the disease! I do know that I don’t have a choice if I want to fight to live.

People often question me as to why I haven’t gotten much better and need so many medicines, or why I look “ok” sometimes. I’m not one to admit or show my weakness, so this has been a daily internal battle. I push myself way past my limits and sometimes the smallest of tasks have me in so much pain that I am fighting back tears even trying to lift one of my littles. I have been prayed over and hear prayers for healing. I feel the power of prayer in a way I’ve never experienced. I pray for complete restoration for my three kiddos, my husband, and myself. However, I believe there is a reason my family has been given this challenge. I also believe that I have been healed – in a spiritual sense. I may never get better, but that doesn’t change who I am or make me less of a person, and especially not less of a Christian.

I literally feel like I am dying inside, and I am, but no one fully understands, unless they have this too. The severity of the disease goes unrecognized and even the closest of family and friends can’t begin to grasp how horrific this is. I am not one to just sit and let something define me or take me down without a fight. So, I push forward. Pushing forward is probably the best thing that I have done emotionally, yet the worst thing for me physically. I know that this is a marathon and that the ups and downs are part of treating this disease. The reality is that most people who have late stage lyme and co-infections are in treatment for years and are not cured, but can be put into remission. The infections attack each person differently, the bacteria are intracellular and can’t be easily detected or penetrated like a normal bacteria. I am learning that genetics play a huge factor in all of this. These suckers replicate on a cycle. The die-off of them can make you even more sick, and if you are not properly detoxing, they reactivate.

To answer the questions about why there is no end in sight, all I can say is that, as anyone with Lyme knows, treating is like playing a game of whack-a-mole. When you begin to treat one thing, more things pop up. While this has been true for me, it has also been a comedy of errors and mistakes by our medical community.

I had a PICC line for many months and then in May had to have that removed and had a port surgically implanted in my chest. My PICC was clotting and becoming sluggish. So, the plan was that when the port went in, a few days later the PICC would come out. Nothing goes according to plan with me, so this was not the case. A mediport is a more long-term solution, and it has been much easier to tolerate with the exception of the complications that came from that surgery. The surgeon performing the procedure punctured my lung and I have been dealing with the repercussions of a blunt trauma pneumothorax and a lung that does not fully inflate ever since! My lung is still not fully healed and such carelessness is hard to accept. The care I received in the hospital overnight was terrible because the medical staff doesn’t understand Lyme in it’s true form. As you can imagine, I was not happy! However, if I did not need to stay for observation overnight, I would not have met a nurse who herself has been dealing with Lyme, didn’t have a Lyme literate specialist, and was struggling to keep it together. I know we met for a reason! It’s interesting to see how a horrible situation and massive mistake led me to meeting yet another person that needed help and needed to talk to someone about Lyme Disease.

You see, doctors cannot treat Lyme effectively through insurance because the CDC guidelines are based on the guidance of the Infectious Disease Society’s absurd thought that antibiotics do not help with Chronic Lyme, let alone even acknowledge the diagnosis of Chronic Lyme. Subscribe to the blog if you want to hear my thoughts in a future post, because that is a whole different can of worms!

I continue to be blessed with a purpose to serve my Father and advocate for others by having this disease. I may live with this until my time here on earth is over, but I know that He has a plan and that He is bigger than anything that my body is fighting!

Thank you to all who have liked my page and are reading. I hope that you keep sharing this site and joining me on the mission to raise awareness, fight for the truth to be heard, and provide equal treatment for all. No matter how dark the days may be, this is my life and it is both crazy and beautiful!

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  1. Peter Skuce

    I’ve seen comments about your illness but just read your blog for the first time. How terrible that the illness can be so severe but also be so difficult for others (including doctors) to understand. My religious beliefs are not the same as yours but I want to send my thoughts to whatever power there is in the universe to provide a merciful understanding and remission from your pain. Please know that one more person is trying to understand and wishes you well.

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