A new diagnosis! Here is my story, I thought I needed to share. It’s a long post, you’ve been warned 🙈
I know I’ve shared my health journey for some time now. Living with a chronic illness so debilitating that it weighs me down to where I cant lift my head off my pillow more often than not. A flu type ache so deep you feel it in your bones. Brain fog so thick you have a constant glaze over your eyes and all you see is a blur, loss of memories to where you no longer remember the good times from your childhood, daily headaches that sometimes turn into migraines, stomach pains and aches that make you curl up in a ball, numbing and tingling, legs so weak you feel like they could collapse from right underneath you. Loss of words when trying to conversate, fatigue so heavy you can keep your eyes open even when your walking. Sometimes scary when your driving too. I could go on with a 100 more symptoms I feel on a day to day basis. Some come and some go. Some have never left me and have only gotten worse. This pain started slowly in just my shoulders, this was years ago. Unexplained. I was in my early 20’s. I went to drs upon drs, going to multiple physical therapy sessions and all kinds of testing. No answers could be given to me. I just kept living my life, I was young and still vibrant to not let that stop me. I was heavily into working out, it was the only thing that made my pain feel better. I got married, and had my first baby at 25. Then a few short months later when Owen was about 6.5 months old I found out I was pregnant with my Luke. Two babies back to back. Who had time to workout then.. surely not me. I was a tired mom, trying to just keep my head above water with two babies. Shoulder pain weighed me down more, I had gained weight and didn’t have time to workout like I used to. This pain went on for 4 more years. I turned 30, and got pregnant with my baby. After having Reed is when I began to notice things shift with my symptoms. The shoulder pain no longer was just in my shoulders. It was debilitating neck pain also. Sometimes I would have a flare up without knowing what a flare up was and be bed ridden with all over body pain. I was so scared. My mom took me to the er, I thought I was dying or sick with some crazy disease. Sure enough all my labs looked “normal”
So I trusted the doctors and just thought I guess this is normal. I didn’t have very many of those flare ups back then. And no one could explain them so I just kept living my life as a busy mom of 3 with chronic neck and shoulder pain. Back in 2014/15 we sold our condo and lived with Dan’s parents for a bit while we looked for a house. During this time I began to notice my fatigue was worsening, I always just said it was because i was fighting pain all day everyday. But my energy was depleting. When I got sick I got really sick. I usually had a pretty good immune system. But that was starting to not be the case for me.
We found our beautiful home in Brea and moved in in June of 2016! We were so happy and so excited to have a backyard for our wild boys. Shortly after moving in I started having more and more flare ups that kept me bedridden. The pain now was all over. My spine felt like i had been beaten. My upper back and neck tension was so heavy I would get migraines on a regular basis. My irritability was so high and anger and frustration, I would take it out on my kids and husband. I didn’t feel good and I was only getting worse. I tried hiding it as best I could. Going out in public, hanging with friends and trying to hide my pain and exhaustion and just plain feeling sick. I was pretty good at it too. I’m not someone who seeks attention. I actually don’t like when people know there is something wrong with me. I like to pretend everything is great! And then it all falls apart when I get home. I come home exhausted and I would have many days of bed ridden days. I couldn’t keep up with this lifestyle any longer. There is something very wrong. September of 2016 I finally decided to keep pursuing my health. My primary care ran multiple tests as usual and as usual they came back normal. So she referred me to a rheumatologist. He was a jerk. He told me that his wife has 3 kids and is tired a lot too. He ran some tests only because I asked him to, and it came back that I had a few disc bulges and degeneration but nothing serious. He claims the older we get we all start to get that. So he diagnosed me with degenerated disc disease. I tried physical therapy once again. No hope. Nothing worked. Had another follow up with him and I ended up leaving there in tears. He had zero bedside manner and made me feel like I was crazy. I never went back to him again. I started seeing a pain management specialist. Of course they see me as a drug seeker. I’m just trying to function everyday in as little pain possible so I can take care of my 3 young children and husband! I tried neck injections, nope didn’t work. These appts were starting to be a waste of time. After more blood work for any autoimmune disease and mri’s and no answers I now get the diagnosis fibromyalgia. Which is basically just an unexplained muscle pain all over. That wasn’t an answer I wanted to accept because I knew in my bones and in my heart I was sick. I was referred to a fibromyalgia specialist who is out in LA and has his theory of what fibromyalgia truly is. He believed with his research that it had something to do with a genetic mutation in our kidneys. So we take a medication to help our kidneys work properly and we would get better. I put all my hope and trust in him! He said he could fix me! He had compassion and just made me feel like I wasn’t crazy for how I was feeling. So I spent 18 months on his out of this world protocol. I wasn’t getting better. I actually had gotten worse. But I was told it was part of the process or I wasn’t doing the protocol correctly. So I kept going. Until finally I decided this is not working and I’m over living this way. I stopped right before my sisters wedding in August. And I saw some better days. Still feeling like crap but I could try and hide it and function a tiny bit again instead of being bed ridden all the time. In these past 3 years and then some I have seen multiple neurologists, multiple rheumatologists, I’ve had full panel bloodwork done every year since I’ve noticed something was wrong, it wasn’t until this last panel I did for my new neurologist that it started looking a little abnormal. My ANA came back positive which has never done that. Which means some sort of autoimmune is going on. And a few other flagged markers in my blood were high. She once again recommended a rheumatologist.
Now my cousin Laura , who her and I grew up together like two peas in a pod. She started having some weird and scary symptoms that made her feel unwell. This just started happening this past year. We started comparing our symptoms and realizing this is just too weird that we are dealing with the same things. What is going on?? She was told by a friend that her symptoms sound so much like Lyme disease. But how?! We don’t ever remember getting bit by a tick. Well research shows you don’t have to remember or find a tick on you. You can be bit by a nymph which is smaller than a pen tip and not even know it. We’ve also heard that fleas and mosquitos can carry Lyme too. We’ve spent our whole lives in June Lake in the summer. Could it be?! Do we have Lyme disease? We were referred to an outside specialist who doesn’t take medical insurance. Now I’ve had Lyme tests taken a couple times only for my dr to tell me it’s come back normal. Which is why I never thought it could be Lyme. Come to find out lab Corp and quest diagnostics only run the western blot test and when you have chronic Lyme which means you have been living with the disease for years, it starts hiding in your organs and tissue and other areas of your body. This western blot test is not accurate enough to detect the Lyme. Let alone its coinfections like Bartonella or Babesia(a cousin of Malaria)! I know I didn’t know there were other infections you could get either. Lyme is complicated. And it’s still unknown how to truly treat it. People have there theories and their successes on what they’ve done. But everyone is different and what works for one person might not work for another. So Laura and I decided to pay for our own lab tests and all it’s coinfections with another lab that would for sure show if we had the disease or not. Sure enough our tests came back positive for chronic Lyme and it’s coinfections. Not only do I have Lyme but I also have Epstein-Barr which is another chronic illness that my labs showed I have but sadly they did not tell me and I had to find this out on my own when I printed all my lab work for this specialist to see and go over. This has been such a long and agonizing journey for me and my family. For so long I felt alone. I felt people didn’t believe me, only my husband and my kids, and a few close family and friends truly knew what this disease was doing to me.
This journey isn’t over. I don’t know where I’m going to go yet for treatment. Like I said before there is a lot of conflicting research out there with this disease. Western medicine thinks treating Lyme is with antibiotics, but from what the Lyme specialist told me is that I’m way past that treatment and it will piss off the Lyme and only make it worse. Lyme is a very scary disease as it could lead to other things and start attacking your organs and possibly lead to cancer. I’m really trying to do my best in finding what route to take with my treatment. My story isn’t over yet. If you read this whole story thank you for sticking with it! Lol it was a lot. But I get my stress out in writing. I love to write and I love sharing my story and my journey because I know for a fact there are others out there suffering. For those of you questioning your diagnosis, or undiagnosis, you are your own advocate! Do not take their word for it. Ask for your labs and the results! Do your own research, see outside alternative medicine specialists. Don’t give up! You know what you feel and if you feel somethings off and you don’t feel right, well then its not and there is something wrong! No one can tell you anything different. For those of you silently suffering from a chronic illness, I’m so sorry. I totally get you 100 percent. And I believe you. Thanks for hearing my story! Onto the next chapter!
I know I’ve shared my health journey for some time now. Living with a chronic illness so debilitating that it weighs me down to where I cant lift my head off my pillow more often than not. A flu type ache so deep you feel it in your bones. Brain fog so thick you have a constant glaze over your eyes and all you see is a blur, loss of memories to where you no longer remember the good times from your childhood, daily headaches that sometimes turn into migraines, stomach pains and aches that make you curl up in a ball, numbing and tingling, legs so weak you feel like they could collapse from right underneath you. Loss of words when trying to conversate, fatigue so heavy you can keep your eyes open even when your walking. Sometimes scary when your driving too. I could go on with a 100 more symptoms I feel on a day to day basis. Some come and some go. Some have never left me and have only gotten worse. This pain started slowly in just my shoulders, this was years ago. Unexplained. I was in my early 20’s. I went to drs upon drs, going to multiple physical therapy sessions and all kinds of testing. No answers could be given to me. I just kept living my life, I was young and still vibrant to not let that stop me. I was heavily into working out, it was the only thing that made my pain feel better. I got married, and had my first baby at 25. Then a few short months later when Owen was about 6.5 months old I found out I was pregnant with my Luke. Two babies back to back. Who had time to workout then.. surely not me. I was a tired mom, trying to just keep my head above water with two babies. Shoulder pain weighed me down more, I had gained weight and didn’t have time to workout like I used to. This pain went on for 4 more years. I turned 30, and got pregnant with my baby. After having Reed is when I began to notice things shift with my symptoms. The shoulder pain no longer was just in my shoulders. It was debilitating neck pain also. Sometimes I would have a flare up without knowing what a flare up was and be bed ridden with all over body pain. I was so scared. My mom took me to the er, I thought I was dying or sick with some crazy disease. Sure enough all my labs looked “normal”
So I trusted the doctors and just thought I guess this is normal. I didn’t have very many of those flare ups back then. And no one could explain them so I just kept living my life as a busy mom of 3 with chronic neck and shoulder pain. Back in 2014/15 we sold our condo and lived with Dan’s parents for a bit while we looked for a house. During this time I began to notice my fatigue was worsening, I always just said it was because i was fighting pain all day everyday. But my energy was depleting. When I got sick I got really sick. I usually had a pretty good immune system. But that was starting to not be the case for me.
We found our beautiful home in Brea and moved in in June of 2016! We were so happy and so excited to have a backyard for our wild boys. Shortly after moving in I started having more and more flare ups that kept me bedridden. The pain now was all over. My spine felt like i had been beaten. My upper back and neck tension was so heavy I would get migraines on a regular basis. My irritability was so high and anger and frustration, I would take it out on my kids and husband. I didn’t feel good and I was only getting worse. I tried hiding it as best I could. Going out in public, hanging with friends and trying to hide my pain and exhaustion and just plain feeling sick. I was pretty good at it too. I’m not someone who seeks attention. I actually don’t like when people know there is something wrong with me. I like to pretend everything is great! And then it all falls apart when I get home. I come home exhausted and I would have many days of bed ridden days. I couldn’t keep up with this lifestyle any longer. There is something very wrong. September of 2016 I finally decided to keep pursuing my health. My primary care ran multiple tests as usual and as usual they came back normal. So she referred me to a rheumatologist. He was a jerk. He told me that his wife has 3 kids and is tired a lot too. He ran some tests only because I asked him to, and it came back that I had a few disc bulges and degeneration but nothing serious. He claims the older we get we all start to get that. So he diagnosed me with degenerated disc disease. I tried physical therapy once again. No hope. Nothing worked. Had another follow up with him and I ended up leaving there in tears. He had zero bedside manner and made me feel like I was crazy. I never went back to him again. I started seeing a pain management specialist. Of course they see me as a drug seeker. I’m just trying to function everyday in as little pain possible so I can take care of my 3 young children and husband! I tried neck injections, nope didn’t work. These appts were starting to be a waste of time. After more blood work for any autoimmune disease and mri’s and no answers I now get the diagnosis fibromyalgia. Which is basically just an unexplained muscle pain all over. That wasn’t an answer I wanted to accept because I knew in my bones and in my heart I was sick. I was referred to a fibromyalgia specialist who is out in LA and has his theory of what fibromyalgia truly is. He believed with his research that it had something to do with a genetic mutation in our kidneys. So we take a medication to help our kidneys work properly and we would get better. I put all my hope and trust in him! He said he could fix me! He had compassion and just made me feel like I wasn’t crazy for how I was feeling. So I spent 18 months on his out of this world protocol. I wasn’t getting better. I actually had gotten worse. But I was told it was part of the process or I wasn’t doing the protocol correctly. So I kept going. Until finally I decided this is not working and I’m over living this way. I stopped right before my sisters wedding in August. And I saw some better days. Still feeling like crap but I could try and hide it and function a tiny bit again instead of being bed ridden all the time. In these past 3 years and then some I have seen multiple neurologists, multiple rheumatologists, I’ve had full panel bloodwork done every year since I’ve noticed something was wrong, it wasn’t until this last panel I did for my new neurologist that it started looking a little abnormal. My ANA came back positive which has never done that. Which means some sort of autoimmune is going on. And a few other flagged markers in my blood were high. She once again recommended a rheumatologist.
Now my cousin Laura , who her and I grew up together like two peas in a pod. She started having some weird and scary symptoms that made her feel unwell. This just started happening this past year. We started comparing our symptoms and realizing this is just too weird that we are dealing with the same things. What is going on?? She was told by a friend that her symptoms sound so much like Lyme disease. But how?! We don’t ever remember getting bit by a tick. Well research shows you don’t have to remember or find a tick on you. You can be bit by a nymph which is smaller than a pen tip and not even know it. We’ve also heard that fleas and mosquitos can carry Lyme too. We’ve spent our whole lives in June Lake in the summer. Could it be?! Do we have Lyme disease? We were referred to an outside specialist who doesn’t take medical insurance. Now I’ve had Lyme tests taken a couple times only for my dr to tell me it’s come back normal. Which is why I never thought it could be Lyme. Come to find out lab Corp and quest diagnostics only run the western blot test and when you have chronic Lyme which means you have been living with the disease for years, it starts hiding in your organs and tissue and other areas of your body. This western blot test is not accurate enough to detect the Lyme. Let alone its coinfections like Bartonella or Babesia(a cousin of Malaria)! I know I didn’t know there were other infections you could get either. Lyme is complicated. And it’s still unknown how to truly treat it. People have there theories and their successes on what they’ve done. But everyone is different and what works for one person might not work for another. So Laura and I decided to pay for our own lab tests and all it’s coinfections with another lab that would for sure show if we had the disease or not. Sure enough our tests came back positive for chronic Lyme and it’s coinfections. Not only do I have Lyme but I also have Epstein-Barr which is another chronic illness that my labs showed I have but sadly they did not tell me and I had to find this out on my own when I printed all my lab work for this specialist to see and go over. This has been such a long and agonizing journey for me and my family. For so long I felt alone. I felt people didn’t believe me, only my husband and my kids, and a few close family and friends truly knew what this disease was doing to me.
This journey isn’t over. I don’t know where I’m going to go yet for treatment. Like I said before there is a lot of conflicting research out there with this disease. Western medicine thinks treating Lyme is with antibiotics, but from what the Lyme specialist told me is that I’m way past that treatment and it will piss off the Lyme and only make it worse. Lyme is a very scary disease as it could lead to other things and start attacking your organs and possibly lead to cancer. I’m really trying to do my best in finding what route to take with my treatment. My story isn’t over yet. If you read this whole story thank you for sticking with it! Lol it was a lot. But I get my stress out in writing. I love to write and I love sharing my story and my journey because I know for a fact there are others out there suffering. For those of you questioning your diagnosis, or undiagnosis, you are your own advocate! Do not take their word for it. Ask for your labs and the results! Do your own research, see outside alternative medicine specialists. Don’t give up! You know what you feel and if you feel somethings off and you don’t feel right, well then its not and there is something wrong! No one can tell you anything different. For those of you silently suffering from a chronic illness, I’m so sorry. I totally get you 100 percent. And I believe you. Thanks for hearing my story! Onto the next chapter!