There are so many things I have learned over the course of the last year. What I realize now is that there are a lot of things that no one tells you about treatment. So here is my version of “What to expect when you’re expecting tick borne illness treatment.”
1. Going to the Emergency Room will be a nightmare for you most of the time. You will end up being you’re own doctor. I live about 20 miles outside of Baltimore, MD. My local hospital is owned by The University of Maryland and I still had to explain what was wrong. There were doctors and nurses there that either hadn’t heard of Lyme or thought it was “Lyme’s.” I have been there twice since treatment has started, both for blood clots. Both times I had to explain my diseases, my meds and my treatment plan. Neither time were any of the providers familiar with the type of central line I had. Last Wednesday, most recently, was the worst experience. I had put on a mask for my own protection and the registration person asked if I had Ebola? SERIOUSLY. When I went to triage I explained that I have almost no immune system, so they put me in a part of the ER for “isolation” which consisted of 5 recliner chairs and curtains. Guess they need to learn about isolation. I had been herxing for a while (coming in waves of intensity and violence,) when I was told they had a bed for me. Ooops they made a mistake. Instead I was left in the hallway violently herxing for over an hour till the room opened up. Not one doctor, nurse, tech, janitorial person ever stopped to check on me. That is until my mom took care of that. Eventually when I got into the room, they took blood from my arm, not my central line as they could have. I was x-rayed and finally got my ultrasound. No clot this time, but no reason for the lump at all, nor was my chest pain or shortness of breath even questioned. (I had mentioned it several times.) Never was my port flushed. No one even wanted to have anything to do with it. Finally I was discharged (7 hours later) with chest pain and shortness of breath and told nothing to do.
You may be lucky enough to have a better local hospital than I do/did, but chances are once you mention Lyme, let alone any other TBD, you’re going to be looked at differently. So be prepared if you ever have to go.
(Side note I did contact my Doctor in the morning and the problem was explained in great detail, instructions were given on how to deal with it and what to do the next time it happened.)
A. A cane, a walker and crutches were good walking aides for me. There were times I probably should have been in wheelchair but I was stubborn. Use them if you need them! Have NO SHAME for what you are going through.
B. Lots of pillows in varying sizes and firmness. There will be times you will need them. Right now I have 8 on my bed. I use them to prop me into certain positions so that I can be comfortable enough to sleep. I use them everywhere and so will you.
C. Depends/Adult diapers. That was a hard blow to my ego but once you have an accident, you’ll think twice. Its the meds, its not you. For me that accident came at 530 in the morning crying for my mom, because it was everywhere on me and in my bed. Since then, anytime I think I might not be able to control my bowel and bladder, I slide into them. They are very uncomfortable at first, but they get better. And with a pair of jeans you’ll never even notice them and neither will anyone else.
D. Toilet paper. Stock up! Look for sales. Because antibiotics make a normal person have loose stools, its going to worse for you. Your butt will hurt. Vaseline does help.
E. Padded Toilet Seat. I was lucky enough to have my mom make one for me. Its awesome! It helps with the pressure on my hips and lower back.
F. Heating Pad(s) Even in the hottest of summers you will need your heating pad because it helps. I have king sized. Now that the seasons are changing and the barometric pressure (which normally does not make Lyme and TBD patients feel good) I am using it even more. I have Reynaud’s as well and limited circulation in my feet. So sometimes the heating pad helps warm me up.
G. Food. Feed your body healthy stuff, its nature’s medicine. Gluten is terrible for Lyme. The spirochetes feed off of gluten and processed sugar. Good for you food can be expensive but it is worth it at least during treatment. Because you’ll be sicker from treatment, you probably won’t want to eat, so spend it on good stuff for when you are eating.
H. Emergency Contacts. When you are home by yourself (at that point in treatment) make sure you have as many people as you can to call in case of an emergency. I’m lucky enough to a more than a few. Make sure that those most likely to respond have access to your residence. I have had days where I am completely bedridden and can’t make it down the steps safely to unlock the front door. Be prepared.
I. Medical supplies. Yes you will need a lot and most will come from your doctors via prescription, but there’s a lot you’ll need on your own. Alcohol preps. Masks for you and visitors. Gloves. An IV pole (buy it or make it.) For me I had to purchase tubing, saline and heprin flushes for the days I’m not dosing and using the lactated ringers. That stuff is NOT cheap. Use the internet to comparison shop.
J. Epsom Salts. These are great for detoxing your body. Pour it in a warm bath and soak. It does help a lot. I get mine from the dollar store. Same sized bag at Walmart is almost $5.00.
K. Schedule. Stick to whatever schedule/regime your doctor has given you. Set alarms on your phone if you need to, to remind you when take your meds. Do what you have to do.
L. BIG Pill containers. I looked everywhere for ones big enough to hold all my pills. I found them at The Dollar Store. I use plastic snack containers with a snap on lid (mine are about 2inches long and 1.5inches wide and deep) and they have worked perfectly. My mom does my pills and we have enough containers (AM and PM) to do 15 days worth of my meds. They work great!
3. Weight Loss. Whether you want to or not, you will lose weight. At the beginning of this year I was up to 175lbs and am now at 133lbs. I was grateful to lose most of it, but it wasn’t a healthy way. I have still maintained a lot of muscle (herxing can be the most intense workout.) In a week I dropped 10lbs. If I sit on a hard surface, I actually feel me sitting on my bones. Again, pillows to the rescue.
4. Things will get worse before you get better. Treatment is rough and hard and taxing and sometimes, you’ll think, worse than the cure. You’ll feel like you’re losing your mind, you will cry in pain. That means its working. Treatment is getting all that horrible stuff out of you. I had thought I turned a corner in October, I was making great progress. I still had a lot of bad days but I also had good days. Things are turning around again. I have increased brain fog, my fine motor skills are horrible (one day it took me 20 minutes to zip up a jacket, I wouldn’t give up,) my hips and lower back are worse than ever. Back to days of being bed confined. Sleep was better and now is worse. I go back to the doctor tomorrow and they can adjust/add/remove the meds they need to, to get me back on track. This up and down is not only rough on you but also on your family/caretakers/friends. They will see you get better and then see you worse.
5. Be prepared to be taken care of and learn to ask for help. YOU CAN NOT DO THIS ALL ON YOUR OWN! Its harder for some (like me) and easier for others. Practice. Learn. Do.
6. Welcome to the dark side. Your brain will take you to very nasty, horrid, treacherous places. Find something to draw you away from it. For me I looked toward spirituality. Meditations has done wonders for me. Find something that will pull you back when you can’t read or write, or process tv. You will have moments of silence, moments when its just you. My brother once said “If you can sit in a room with just yourself and nothing else and be okay, then you are okay.” I use his words often.
7. Mood swings. Depending on the damage done to your brain the intensity of the moods may be different. I was impossible to deal with. My moods were all over the place. I cried over stupid things. I was vocal “LEAVE ME ALONE, YOU WILL NEVER UNDERSTAND.” I was demanding. I was happy and overjoyed. I was panicked and anxious. I was just a mess for about 2 months. My poor mother endured it like a champion! I could not have asked for a better mother, she has been there for me whenever I needed her and gone above and beyond what most parents would do. I love you Mom!
8. DO NOT COUNT ON INSURANCE COMPANIES! They lie and cheat you. I made sure exactly what they would cover and confirmed with several other employees. They lied about it. I’m in the appeal process with my insurance company now. Have a back up plan. If they tell you its covered, make sure you get it in writing. If they refer you to the internet, that’s not good enough. Have them mail it to you with a name on it. Keep track of everything. Every person you spoke to and when. They count on the fact that if you get denied for something, you won’t appeal it…APPEAL ALWAYS!
9. Set up coordinators. You cannot handle everything yourself. My mom is the one who handles all my bills and updates my checkbook and reconciles my account. My stepmother has taken over the insurance company issues. My uncle helps anyway he can, fixed my car for free because he loves me and wants to help. It was hard to let him pay for it, but I have to accept the gift and stop beating myself up over it. I have people I can talk to and listen to me when I need a good cry or vent and best of all have intelligent conversations over the important things in life.
10. You will be sicker than you have ever been in your life. Yes there’s vomiting, diarrhea, herxing, cognitive problems, confusion, pain in your bones, and more. I was talking with my Dad and I said ” I think that this (Lyme & TBDs) is like going to rehab but worse. In rehab you detox your body from the actual drug(s) and then you move to inpatient treatment where they help you with your thoughts. And since people usually are “stuck” emotionally from when they started using, its like learning for the first time. But with me, I’m doing both at the same time.” He agreed and so does my mom. Keep faith. Take it day by day, minute by minute if needed. On my horrible days I repeat the following “On particularly bad days when I’m sure I can’t endure, I like to remind myself that my track record for getting through bad days so far is 100% and that’s pretty good.”
11.People will NOT understand your disease or your treatment or why its not covered by insurance. Some people will want to know everything and some people just turn away, convinced you’re faking because “you don’t look sick.” How you choose to deal with it is your choice. I feel people out as to how to deal with it. People still judge me and because of so many misdiagnosis that this is just the “new one” and you’re crying wolf. It hurts, especially when it comes from a friend.
12. YOUR ILLNESS WILL BECOME YOUR LIFE, at least until you are well enough. This is a hard one for me. It doesn’t mean I don’t dream about the day when I’m in remission, or my plans for the future, but right not everything I do is centered around my diseases. Can I go to lunch tomorrow? If my body cooperates I can. Explain to people that you won’t know till the day and time of. I blog about Lyme because I need to get things out. I want to help others. Make good out of bad, but even that is Lyme driven. My meds, my movement, my mind, my pain…Lyme and TBDs dictates my life and so for now I accept that. But Lyme still does not define who I/you are as a person.
13. You will learn. Hard lessons. Knowing how much you can push your body in a given day. Learning what real friendship is. Rekindling old relationships. How to heal a family. What pain is like on a scale other than 1 to 10. Learning compassion. Lowering your guard. Accepting help and asking for it. Learning about the simple pleasures in life that we take for granted. Treatment is a learning process as well as the disease. You will not be the person you were by the time treatment is done. They say many Lyme/TBDs become very sensitive after treatment. They are aware of their surroundings, nature, emotions, learn how to focus and have compassion. Despite all the bad I have gone through thus far, I am a very different person already and I’m sure that I will be a different person still by the time I am in remission. For me one of the best things that I’ve gotten back so far, is the ability to REALLY love and feel loved.
14. DO NOT BE ASHAMED! Don’t apologize to other people, who don’t understand you just to make them happy. Know that on any given day you are doing your personal best. Don’t be ashamed for getting this disease, YOU DIDN’T DO ANYTHING TO GET IT! Its not your fault that you have this. Its not your fault that with years of misdiagnosis it changed you, made you a person you didn’t like. This disease had done damage that even you couldn’t see or forecast. When you are clear minded, make amends with those that you hurt in the past, explain it wasn’t intentional (unless it was.) You don’t need to apologize to everyone, but with those you know you truly hurt and/or those you want back in your life.
15. Motor mouth and education. When you were first suspected or diagnosed with Lyme/TBD, you probably researched the hell out of it. You’ve learned all new facts and are/were utterly stunned that you didn’t know this before, that insurance companies are a joke, the lack of Lyme Literate Doctors (LLMD.) You will learn so much that you just can’t keep it in at first. You’ll want to tell everyone everything you know to get it off your chest and to educate everyone so they don’t get these diseases. Some people will ask questions about it, want to know everything about it, how you got diagnosed and how you’re doing Some people (even the ones you want to) will call you a fake or just turn away. Either way, education is very important. Try a support group, they will be the only ones who really understand what you’re going through and won’t mind you spilling all new facts, in fact because others are doing the same, you might learn a thing or two.