Here we are a brand new year. 2020... wow I can’t even believe I have made it another year living like this. Another year gone and I feel another year wasted with me being so sick with this disgusting disease we call Lyme. I remember feeling so sad and so lost last year around this time, so sick and counting down the hours I spent laying in bed all day everyday. I missed out on our annual family desert trip last year, and while I wanted so bad to go, there was just no way I could. I was way too sick. And the year before that, well I was there at the desert with my family, and I remember leaving there in tears on the way home begging God to give me an answer as to why I was having to suffer so badly in this debilitating pain and exhaustion, and cognitive deterioration. I couldn’t keep up with my kids, I couldn’t keep up with life. Packing for that trip in our motorhome that year took me out so badly that I spent the entire trip in the back on the bed praying to feel better. I felt awful. And yet I survived, and I survived again this year. Another year with this unexplained sickness that had come over me and no doctor could explain what it was or why I was feeling this way. Years of drs, and prescriptions. Specialists, MRIs, bloodwork after bloodwork. Yet all I got from the drs was “your bloodwork looks fantastic” or “you look perfectly normal!” All I wanted to say was “screw you!” But I didn’t because I knew that it wasn’t their fault they had no idea. Western medicine can only go so far with what they are taught in med school. I was a different case. Sadly, there are so many cases like me, people just like me who are suffering and getting the same responses and reactions from drs over and over.
I started reading Yolanda Hadid’s book called “Believe Me”. And I haven’t gotten far, but just reading the introduction I knew that this woman’s story sounded so much like mine. My mother in law read it in two days just recently while we were at the desert and her words were “fascinating!” She knows what I have been going through and she said her story is so fascinating and so much of it is my story. So if you ever are bored and you love to read and want to know a little more deeply in the day in the life of a lymie... read her book!
I started reading Yolanda Hadid’s book called “Believe Me”. And I haven’t gotten far, but just reading the introduction I knew that this woman’s story sounded so much like mine. My mother in law read it in two days just recently while we were at the desert and her words were “fascinating!” She knows what I have been going through and she said her story is so fascinating and so much of it is my story. So if you ever are bored and you love to read and want to know a little more deeply in the day in the life of a lymie... read her book!
I’m sharing some pics of me that are super embarrassing but I feel so critical for you all to see. The realness of it and unedited version of my life living with this disease. Above is me after a shower. I’m usually shivering because my body temperature can not regulate itself anymore and I feel like I have the flu like shivers and chills 24/7. So getting out of the shower is the absolute worst feeling ever. Not only do I feel like I’m living in Alaska, but I have used up most of my “spoons” taking that shower. Now it you don’t know the spoon theory I can explain it a little more. In our everyday life we have a limited amount of spoons we use for the day. And each spoon you use is gone until the next one and next and so on. For us Lymie’s each task we do like showering, getting dressed, brushing our hair, blow drying all requires a spoon. Because we are so depleted of energy, in which Lyme bacteria has run down our immune system and cells and just damages the way your body is designed to function so badly, we can’t make enough energy to complete all of these tasks. So the spoon theory has been created as a way to explain to us and everyone else what it means when we use up all of our energy or spoons. For me personally I use a lot of spoons to just get out of bed, get in the shower, soap myself up which requires a lot of energy just to wash my hair and my body. On top of the pain I’m in just lifting my arms above my head for a certain amount of time. Then getting out and getting dressed... boy does it seem like another huge mountain to climb. I despise taking a shower these days. I know I’m gross, but I just hate thinking about how much energy it’s going to take for me to do all of that. My bed just seems like the safest place for me to be. I can isolate myself from people when I haven’t showered and I don’t have to think about all that it takes to get ready for the day. Hence the picture of me blow drying my hair. That day I was getting ready for a social event. I had used up a lot of my energy in my shower and getting dressed but I knew I had to be somewhere. So we press on... blow drying it is. My body is so weak and my pain is always so intense that holding up my arms to blow dry is almost impossible most days. So I have my little set up right next to my bed. Boy did that take a lot of energy to do. I don’t wear makeup anymore and I usually just throw my hair up in a bun so I knew I just needed to get through this last bit of the process and then I could rest again before I had to leave.
You see, everything we do requires energy in life, whether it’s physically or mentally. And when your body has been depleted of things that are not working properly which in my case, living with this disease out of its dormancy for so long, it has caused my body to go haywire. Nothing is functioning properly. From my cognitive function to my liver, kidneys, to my adrenals, thyroid, hormones which are all not functioning properly, to having almost no magnesium, not able to intake protein for whatever reason, having an iron overload which is very toxic to your liver and not knowing why. These things and many more are a lot of what Lyme disease has done to my body. I try my very best to not let it take me down. I have to continue on to be the best version of myself for my children and my husband. So I go and slap on my smile and I engage in conversations and I live my life the best way I can. All while feeling like death has just rolled over me. And sometimes I can forget for a little bit each day that I am as sick as I am.
Which brings me to our desert ride I told myself to go on. I tried going on a ride like I used to out in the desert. I knew it was going to be taking a chance for me. But the day before I had one of the best days I could ever ask for. Nothing could stop me from feeling so good! I couldn’t believe it. I didn’t want to go to sleep that day. I woke up of course feeling bad and struggling. Sleeping in a motorhome bed is just not ideal for my body. So I wasn’t surprised how I woke up. But everyone was going on a ride and I wanted to try and tough it out. However I had a bad feeling in the back of my mind. On the way back from that ride my body started to act up and I flared up with so many of my symptoms I thought I could just die. It was freezing outside and I wasn’t prepared for it. The ride was so bumpy my pain was just so unbearable, I could feel my back and it felt like my vertebrae’s were just shattering. We got to a pit stop at am/pm and I just couldn’t pretend I was ok any longer. The noise from the motorcycles and desert cars, the gas fumes, the cold, the people talking all at once in am/pm I thought I was in a twilight zone. Way too over stimulated and way too sick to take it. I can’t even remember getting back to camp. I don’t know how I got back in bed. I was in bed for about 4 hours I believe. My back pain, neck pain, joint pain, and rib pain were so inflamed I couldn’t think straight and I couldn’t even get my body to sleep. I went into somewhat of a shock which has happened to me before and my body starts to have small uncontrollable twitches or convulsions that I haven’t had in along time. And have actually stayed with me to this day. So I popped what I had which was a norco(left over from my er visit just a couple weeks ago) and my cbd pain meds and tried to keep going. I put on my game face and I dressed in my big comfy which is a baggy blanket type sweatshirt that makes me look like a flying squirrel but keeps me from freezing my buns off🤣 and I moved on. I ended up suffering badly from pain and exhaustion and nausea for the rest of the trip. The day after my ride I spent the entire day in bed in the motorhome. I couldn’t even think about getting up and going out. It was all so loud outside. So that was a bit of a wasted day. But it’s what I knew was going to happen and I’ve been doing this for far too long that I just accept it and I move on. I don’t dwell on it, I can’t, it would just make things so much worse for me mentally.
As we wrapped up our trip, I look back at the year we’ve had as a family. 2019 was not as good to us as I had hoped, but at the same time there were small things, small blessings that we can say we’ve had in the midst of the storm. And so for that I am thankful. Like I have said before 2020 is going to be my year. I can feel it. I have a diagnosis, I have a dr who I trust and who knows what I need to get better and I have my village. I have a big unconditional loving village that I wouldn’t know what I would do without! Thank you to all of you. You know who you are. As my boy Lukey would say “LETS GO!” Peace out 2019. #healing2020
You see, everything we do requires energy in life, whether it’s physically or mentally. And when your body has been depleted of things that are not working properly which in my case, living with this disease out of its dormancy for so long, it has caused my body to go haywire. Nothing is functioning properly. From my cognitive function to my liver, kidneys, to my adrenals, thyroid, hormones which are all not functioning properly, to having almost no magnesium, not able to intake protein for whatever reason, having an iron overload which is very toxic to your liver and not knowing why. These things and many more are a lot of what Lyme disease has done to my body. I try my very best to not let it take me down. I have to continue on to be the best version of myself for my children and my husband. So I go and slap on my smile and I engage in conversations and I live my life the best way I can. All while feeling like death has just rolled over me. And sometimes I can forget for a little bit each day that I am as sick as I am.
Which brings me to our desert ride I told myself to go on. I tried going on a ride like I used to out in the desert. I knew it was going to be taking a chance for me. But the day before I had one of the best days I could ever ask for. Nothing could stop me from feeling so good! I couldn’t believe it. I didn’t want to go to sleep that day. I woke up of course feeling bad and struggling. Sleeping in a motorhome bed is just not ideal for my body. So I wasn’t surprised how I woke up. But everyone was going on a ride and I wanted to try and tough it out. However I had a bad feeling in the back of my mind. On the way back from that ride my body started to act up and I flared up with so many of my symptoms I thought I could just die. It was freezing outside and I wasn’t prepared for it. The ride was so bumpy my pain was just so unbearable, I could feel my back and it felt like my vertebrae’s were just shattering. We got to a pit stop at am/pm and I just couldn’t pretend I was ok any longer. The noise from the motorcycles and desert cars, the gas fumes, the cold, the people talking all at once in am/pm I thought I was in a twilight zone. Way too over stimulated and way too sick to take it. I can’t even remember getting back to camp. I don’t know how I got back in bed. I was in bed for about 4 hours I believe. My back pain, neck pain, joint pain, and rib pain were so inflamed I couldn’t think straight and I couldn’t even get my body to sleep. I went into somewhat of a shock which has happened to me before and my body starts to have small uncontrollable twitches or convulsions that I haven’t had in along time. And have actually stayed with me to this day. So I popped what I had which was a norco(left over from my er visit just a couple weeks ago) and my cbd pain meds and tried to keep going. I put on my game face and I dressed in my big comfy which is a baggy blanket type sweatshirt that makes me look like a flying squirrel but keeps me from freezing my buns off🤣 and I moved on. I ended up suffering badly from pain and exhaustion and nausea for the rest of the trip. The day after my ride I spent the entire day in bed in the motorhome. I couldn’t even think about getting up and going out. It was all so loud outside. So that was a bit of a wasted day. But it’s what I knew was going to happen and I’ve been doing this for far too long that I just accept it and I move on. I don’t dwell on it, I can’t, it would just make things so much worse for me mentally.
As we wrapped up our trip, I look back at the year we’ve had as a family. 2019 was not as good to us as I had hoped, but at the same time there were small things, small blessings that we can say we’ve had in the midst of the storm. And so for that I am thankful. Like I have said before 2020 is going to be my year. I can feel it. I have a diagnosis, I have a dr who I trust and who knows what I need to get better and I have my village. I have a big unconditional loving village that I wouldn’t know what I would do without! Thank you to all of you. You know who you are. As my boy Lukey would say “LETS GO!” Peace out 2019. #healing2020