Month Five Begins But My New Protocol Does Not: The Medical Runaround Continues.

“If you get tired, learn to rest, not quit.” -Banksy

Whew I am so tired and so quickly and so often. It feels like my body has reverted to a toddler or infant state in that I need a nap and lots of sleep at night. If I can’t get that then my body is cranky (more sickly or painful) at night.

It’s amazing the importance of sleep in healing the body.

In fact, sleep influences the body's ability to repair and grow tissue, bone, and muscle, as well as properly detox. Sleep can also help your body to make more white blood cells that can attack viruses and bacteria which can hinder the healing process. Though I don’t sleep well, I can acknowledge that sleep does so many important things. I am continuing to work on respecting what my body needs. So, to the toddler/infant state I go.

In trying to keep all that in mind, but things have been stressful with the “runaround” in the medical world. For the last two months we have been watching my skin closely and exhausting all options for bandage changes to remedy that. Finally, we came to the last option, to suture the central line. It is unbelievable the hoops I’ve had to jump through just to find out who could do the procedure and where.

This weekend I had my line sutured by an ED department, who did an “evaluation” and said they could do the procedure. Once the day was over, I had been in the ER twice, the sutures were done incorrectly or not how I was assured they would be done and then the nurse was rude and rough with my central line, sat in the parking lot for a hot minute (actually very hot outside), and then spent two additional hours speaking with patient care and then the lead ED physician. This all resulted in yet another referral to somewhere else to evaluate the sutures.

I wish I could say this was the only “run around” the last few weeks, but it is not.

In fact, I was supposed to start my new protocol today, but the IV meds did not come over the weekend. I had to wait till 6:00pm to see if they would be coming and when they didn’t, I started the “runaround.” It being the weekend and the same day I had to deal with the suture issues, I could not just call the company or my doctors office. I asked around with other Lyme patients, I dug through paperwork. I did some research online and finally found an on-call phone number, leading me to a on call pharmacist that could not help me right away because he was on a boat. He was on a boat while on call. I will say he was very kind and helpful later in the night. Unfortunately, I am still without my IV meds. I hope I will receive them by tomorrow, but now my treatment schedule is all messed up. I am going to have to treat for fourteen days straight rather than having a weekend off IV antibiotics. That is really hard on the body and almost torture, all because I had to play the roll of the people I am paying to play their own roll.

It is very difficult to not only go through a painful treatment and to fight a disease with limited mental process, but to also have to be the go-between the doctors, pharmacies, special IV facilities, and so forth. Making phone calls, writing emails, waiting the 48-72 hrs. for a response, and working around not leaving more than one message at a time. Its pretty insane. It’s difficult to juggle all the hats I must wear. I know I am not the only one who feels this way. I have spoken with several other chronically ill who have to take part in the “runaround” race.

It’s almost laughable the comments folks have made about treatment… “I bet you are reading a lot of books.” “Must be nice to have all that down time.” Well, I guess you will get to watch a lot of movies.”

This is not a vacation. There isn’t a such thing as downtime. I am fighting for my life, suffering, and having to “runaround” in order to advocate for myself in the medical world.

I don’t say all this to complain or do the whole “woe is me” saga. I say this to mainly get some stress off my chest, to express the exhaustion, pain, and frustration that comes with treating a chronic illness.

Ultimately, the “runaround” creates stress that leads to inflammation causing pain and sickness, which in turn leads to difficulty sleeping. AND we all know how important sleep is…

Though there is a lot more than meets the eye to fighting Lyme Disease, I am so appreciative for my Specialist and those working to better my health. Furthermore, I am truly thankful to those who have and continue to support me in so many ways. I am especially grateful to those who give me space to express myself with things that are going on, who read the updates all the way through, and who pray for me and give me genuine encouragement.

Thank you.

Please be praying for:

-More rest/sleep & less stress

-My meds to get here as soon as possible

-Smooth transition from a rocky start

-My body to respond well to the protocol & new meds

-Healing with my new sutured central line

-Guidance within new diagnosis

-Grace & compassion for myself and those around me