My LAM Story (Short Version)

If my lymphangioleiomyomatosis (LAM) story had to be summed up somewhat quickly, this is pretty much it. If you want to read about all the details of how I came to be diagnosed with LAM, there’s a full version coming soon.

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In 2019, I began displaying symptoms that came out of nowhere: fatigue, nausea, no appetite. At the time, it didn’t seem serious, so I just did my best to disregard it. Then I started gagging at random times and having severe back pain episodes that sent me to the ER. That’s when my family and I knew something was wrong.

After seeing an array of doctors trying to figure out what was going on, one doctor offered to send my records to a tumor board. This meant a variety of specialty doctors that discuss patient cases, usually unique ones that are hard to diagnose, would try to determine a diagnosis. I learned about tumor boards at my job as a medical editor and was all for it.

I was diagnosed with LAM by the new pulmonologist in October of 2019.

Naturally, this came as a shock to me and my family. We had never heard of it before [like the majority of people in this world]. But the craziest part about this was that all my past medical history contributed to this diagnosis. Namely:

I was scared and nervous for what this diagnosis meant, especially when I learned LAM has no cure.

My thoughts and emotions were all over the place. It was all mentally draining and overwhelming, and no amount of reassurance from anyone helped. No matter how old you get, adapting to a new diagnosis makes you feel like a confused, helpless child [at least to me].

No matter what LAM would bring for me, I was never going to be alone thanks to The LAM Foundation.

Unfortunately, I still experience a pneumothorax from time to time. The surgeries basically tacked my lungs into place so that my lungs don’t lose air when it happens (imagine bubble wrap popping but not losing air). However, it is still VERY painful to experience and it can take a few days to heal. And there’s nothing I can take to lessen the pain. I just have to “ride it out” as my one doctor said. Needless to say, my medical experiences have made me a pro when it comes to handling pain…and I haven’t even gotten to the biggest pain offense yet.

The gagging I had before stopped almost immediately after I started sirolimus. My doctors believe it was my body’s way of putting up a warning sign, so to speak, that something was wrong and it didn’t know what to do. And that seems to be carrying over with the back pain.

I have been “living” with a 9/10-level back pain every day since 2020.

Here comes the worst pain experience during what is considered the most “unprecedented” year. During the COVID-19 pandemic, I was bedridden with limited mobility for about 6 months because my [now chronic] back pain was so bad. And because I couldn’t go to the hospital due to it being unsafe and full of COVID patients, I was prescribed my first opioid, oxycodone (Percocet), to mitigate the pain.

Since I was taking it multiple times a day, I was almost always sleeping, which would limit my time awake dealing with the excruciating pain. But because of that, I was fired from my full-time editor job. Given everything going on, I would not work again until 2022. Luckily, my boyfriend [now husband] took care of me both physically and financially. My parents also helped whenever they could, too. This allowed me to spend that time seeing doctors and trying all sorts of things to help alleviate the pain [spoiler alert: nothing worked otherwise I wouldn’t still be dealing with it to this day].

It soon became clear that I couldn’t work full time anymore, as my various medications made me drowsy and unable to focus and my pain made it difficult to drive, stand, or do any sort of exertion. This also meant that I could no longer do some of my favorite activities, like ice skating and horseback riding. These realizations in addition to the severe frustrations affiliated with my pain caused my mental health to spiral, which led to me also being diagnosed with depression and anxiety.

It is still unknown what is causing my chronic back pain.

Because I have been dealing with the pain for so long, my body has “adapted” to it. Meaning that if I want to have any semblance of a life, I have to tune out the pain and keep going. So, yes, you will see me walking around and doing some other minor activities but all the while, my back is basically torturing me.

The opioid I am on does help to take some of the edge off, but my doctors are trying to find better and safer solutions that could give me the same results, if not better. But even then, my so-called “good days” are not what they should be. And that also means I have bad days where I am curled up in bed and unable to do anything. This is why it is so hard for many to understand or recognize certain chronic illnesses. They don’t know that the people with these illnesses/conditions have to summon their most inner strength just to get the same things as them.

I could get into a lot more detail about this, but I promised that this would be the shorter version of my LAM story. It’s hard to shorten a case that is complicated and rare.

All-in-all, I am doing the best I can with my LAM and my chronic back pain. To say it is hard would be an understatement. But I hope that somewhere in all these words is a better understanding of even just a summarized version of my rare, chronic illness. And if I didn’t bore you to tears and you are looking for more, I will have plenty of content soon that will dive into all my experiences. Until then, thanks for reading and see you bloggers next time!