Our story begins with a phone call from my husband, “I’m not able to recover very well after working out.” I end up making a doctor’s appointment for him. He actually goes to this appointment and is initially diagnosed with walking pneumonia, although the doctor wasn’t really sure, so she had the chest x-ray sent to the radiologist for further inspection. A day passes and another phone call, this time from the doctor’s office stating that they urgently needed to get a hold of Ryan. I pass along his phone number and wait to hear back from him. In these brief moments of waiting to hear back, I have no idea that my life is about to change forever.
All hell broke loose as the radiologist suspected tuberculosis. As we were not really sure what was going on at this point, Ryan submitted to all the testing they were requiring (CT scan, sputum evaluation, blood draw, etc.). It really was a bit disturbing as they didn’t take the time to confirm that he didn’t have TB, they just sent us on our merry way without any information at all. Once all of the results were finally in, Ryan was diagnosed with having pulmonary sarcoidosis. The first few weeks after finding out the diagnosis were crazy! The feelings of uncertainty and worry were indescribable. Ryan started on prednisone and life as we knew it was officially over.
This was an interesting and busy time for us, not just because Ryan was diagnosed and on prednisone, but also because we had several other things happening in our household at the same time:
- We are the proud parents of two school-aged children . . . enough said
- We had just welcomed Ryan’s half-brother into our home to live with us for his Freshman year of college
- Ryan’s job was extremely high pressure and he was under a lot of stress
- I was working part-time, volunteering and trying to make sure that our household was running smoothly
Did I mention that Ryan was on a high dosage of prednisone? Do you know what the side-effects are for prednisone? It was not pretty. The changes were gradual and at first, I didn’t really notice the subtle shifts that were taking place in Ryan and also in me. Ryan slowly withdrew from life. He was not the same presence in our lives that he always had been. He was just going through the motions of life and trying to be a part of it, but not really succeeding in his efforts. I’m not saying that he was totally disconnected, but his usual positive, funny and uplifting self had been replaced by depression and anxiety.
Seven months later, Ryan was almost off of the prednisone and the antibiotics (which he was on for a couple of months because the prednisone had suppressed his immune system which had allowed a bacterial infection to form on his shin), but life was still not quite back to normal. We were stepping through life and trying our best to find different things that might help Ryan get back to his usual happy, positive self, but it was a struggle (and that really isn’t quite a sufficient word for how difficult it was for me to hold everything together).
Ryan and I took a trip, just the two of us, in July 2012. It was intended to be an opportunity for the two of us to reconnect. Things were getting better, but they really were not quite back to “normal”. I distinctly remember one evening when we went out to eat, we both ordered a couple of margaritas with our dinner. Depression took hold, he felt off and I saw him slip away from me once again. That was his last sip of alcohol . . . and I believe it began to shift his perception of the interaction between his body and what he used to nourish it.
Ryan can probably give you more detail about the chronological order of events that took place after this. From my point of view, he began seeing an acupuncturist while still seeing his pulmonologist. Again, lots of testing and waiting for results from the tests to see if he was getting better or worse, and also to see if he would be able to stay off of prednisone. There were a few trips to urgent care during this time, as anxiety began to take hold and he began having panic attacks. Medication was prescribed, of course, and the side effects from these “helpful” drugs did not help him one bit. He became worried about anything and everything. The event that put him over the edge was when the acupuncturist told him that he needed to go get his heart checked. I can only imagine how he felt at this moment. I know that he went home and had a huge breakdown. I wasn’t there for him at that time; although he called me, I was not emotionally available to him. With all of the anxiety and panic that had been taking place, I just chalked it up to another “freak-out” moment (sad as that is!). I tried to be supportive in the only ways I knew how. What did that look like for me? It meant keeping the kids relatively calm and quiet, making sure the puppy was walked, making sure there was food on the table and making sure I had a glass (or two) of red wine every night so that I could hold it all together. In other words, he was pretty much on his own emotionally. And I began trying to make my way through what this new reality was beginning to look like.
Things got worse before they started to get better. Thanksgiving and Christmas of 2012 were difficult. I needed some help with keeping life together, so I insisted that we head home to Montana so his parents and my parents could help take care of us. During this time, we visited the cardiologist and the pulmonologist for a myriad of tests. Ryan began to get rashes on his skin which seemed to be an allergic reaction to latex and polyester. Do you know how much of our clothing is made with polyester and latex? Lots. We began purchasing underwear that didn’t have elastic bands because he would get a horrible rash around his waist whenever he wore it. He talked to his pulmonologist about this downward spiral that we seemed to be in. He wanted to send Ryan to an allergist to figure out what was going on with the hives. Ryan made the appointment with an allergist, but I, along with his mother, urged him to look into NAET (Nambudripad’s Allergy Elimination Techniques), which are usually administered by Naturopathic Doctors (ND). I was on the hunt for a ND who had some experience with NAET and stumbled upon a ND that not only had experience with it, but also had some expertise in dealing with immune disorders. We made an appointment with her and she urged us to change his diet to a strict Paleo elimination diet. Basically, this meant high quality meats and fresh vegetables, a few choice grains and absolutely no processed foods. We took that on and our entire family began eating Paleo. It was an interesting transition, but we all embraced it because we had hope that it would help Ryan get better. And just so you know, the getting better part didn’t really start until February 15, when he received a book that he had ordered called, “The pH miracle” by Robert O. Young, PhD, and Shelley Redford Young. Somewhere in all of the symptoms I’ve described, I forgot to mention the fact that Ryan’s eyes were always a big issue. He had super dry eyes, which was a difficult issue to have as his occupation as a software engineer requires that he sit and stare at a computer screen all day long. After getting this book, he began with one simple change. We started getting filtered water from our local co-op grocery store and he began drinking water with a squeeze of lemon with a vengeance. In just a few days of making this simple change, his eyes were no longer an issue. And I felt like this was this first glimpse of hope that we had experienced in a really, really long time. Over the next few months, Ryan made some major decisions regarding his health. He decided to stop going to the pulmonologist, cardiologist and allergist, and would focus his efforts on acupuncture and naturopathic medicine. This was a huge step in our process of healing and I cannot begin to say enough about these two practitioners that have helped to bring my husband back to me. We began watching documentaries on health and wellness and Ryan began researching like a mad man. We shifted to a vegan diet without grains (we are still in the process of working on this one and we’ve modified a bit for the kids) and began juicing vegetables daily. Also, I should note that starting in January 2013, I began seeing a counselor to help me process all that had happened in the past few years. I was struggling, not just with this major shift in our lives, but also with the relationships with everyone in my immediate family, Ryan and both of my children. Counseling was helpful for me and I highly recommend it to anyone that is in a supporting role of someone with a chronic disease. Also, yoga was a really helpful outlet for me to simply focus on myself and my practice for an hour. I have been blessed with a few key friendships that helped to support me through this difficult time and I really don’t know what I would have done without their love and support.
Reviewing these events, I’m realizing what a crazy roller coaster ride this has been. There have been many ups and way more downs with a few loopty-loops thrown in, just to make it an interesting ride. Through it all, one thing that has never wavered is our love for one another, and for that amazing gift, I am truly grateful.
Ryan is getting better each day. He is happy, healthy and has re-engaged in our family life. I am so thankful that he took control of his own health and followed his intuition. We have hope for our future and are grateful for the journey that we have been on to create a healthier and happier life.