Snapshots of Chronic Illness - Everything Isn't Always What It Seems
I thought I would put together a few pictures throughout the last three years that show a little bit of what chronic illness has looked like for me. This is only a brief snapshot, and doesn’t tell the whole story. I could share so many, but these are just a few that show some of the ups and downs of what you may not see or know behind some social media pictures. This is not the easiest thing for me to share, but I'm getting uncomfortable and I’m going to – in hopes of helping people understand more.
This picture of Sydnee, Summer and I is about 2 months prior to me getting sick. I had the kidney stone and was in constant pain, but it was before my surgery day that changed everything. This is a before illness picture. All pictures seem to hold a before illness and an after illness for me now.
This picture was taken on Monday, December 2nd in my coach Steve’s office. This was my last coaching appointment with Steve before my surgery to remove the kidney stone on Friday, December 6, 2013. I look at this picture and feel so many emotions. I was in horrible pain, but I had no idea the trauma and heartache that was days away. The pain I was in didn’t hold a candle to what was coming.
This picture was taken in February 2014. This was the first time I had been across town since I got sick and was a big deal for me to do this. I was happy to have my hair curled, my makeup on and some nice clothes on. I did not venture far from home, as my body crashed at any given moment, and I was just too sick to go out. It’s hard to explain how sick I was in this picture, physically and neurologically. Marc and I went to dinner at Tommy Bahama’s. That is where this photo was taken. We were supposed to be in Maui for the annual President’s Club trip with Infusionsoft, but there was absolutely no way I could go, I was so sick. I was heartbroken that we could not be on the trip. Maui is my favorite place. So we decided to try to go have as close to an island experience as we could at Tommy Bahamas, which is a favorite restaurant of ours. At the end of dinner, my body crashed so hard within just minutes that Marc quickly took me to the car and I could barely lift my head on the drive home. I look at myself here, and I still have no clue the battle I was going to face to recover in this picture. None. I sincerely thought I’d be back to my normal self by summer.
This was taken in March 2014 at the Sanctuary Resort. One of my new coaches that would be helping me through this health crisis (I’ll talk about her in another post) had flown in from L.A. to meet with me for two days here at the resort. I had no idea if my body and brain would make it during these two days. But it did and I had a good two days talking with her. (When I say good, it means my brain was functioning.) My body was so weak and unpredictable still. I stayed out until 8:00 one night sitting by the pool with Marc. That was huge and it felt good to step back into my old life and do fun things like sitting by the pool at a resort, if only just for a short hour or so.
Easter 2014 – This is about 5 months after I first got sick. I was still very sick in this picture, but I had a day where I had come up for air. I was grateful to feel OK on Easter. It was one of the first pictures where I could see myself again in the picture. I'm sure that doesn't really make sense to most. It was one of the first pictures that I felt OK looking at. I could see my eyes again. I hadn’t been able to recognize myself in the last 5 months. I remember texting my coach Steve Hardison this picture and telling him I felt like there were pieces of me coming back in this picture.
This is at Infusioncon 2014 with Marc and my coach Steve Hardison. The first year they had the conference at the convention center. This was the first time that I dared even to stay a night away from home in 5 months. This was a big deal for me to go. I went even though I didn’t feel completely ready to go. I had my exit plan in place if I needed to leave and my body and brain went into a crash, but it didn’t. My brain felt OK and it felt really good to be there. Infusioncon was always fun for me, so again, it felt good to take another step back into my life. My body was still so weak though. I remember the night before Infusioncon started we went to the press and media dinner at the Desert Botanical Gardens. I had to stop and rest at a halfway point, walking back to where the dinner was being held. I didn’t know if I was going to make it. Marc had to attend and could not get me out of there and back to the hotel if I needed to make an exit. I was concerned about the standing that I could not do. I remember talking to board members, politicians, press and media people, and all the while praying I would hang in there. Standing for long stretches was difficult at this point, but it was a good night, especially when I could sit down for dinner. I remember watching the most spectacular sunset this night as well.
At Infusioncon one day, I remember sitting in the main conference room one afternoon listening to a keynote speaker and my body was so weak at one point, I was having trouble holding my arms up in my lap. I had the tremors too, which happened a lot and made it worse. So Marc wrapped his arm around me holding my arms tight so I could stay and listen to the speaker and not have to return to the hotel. Infusioncon 2014 was a success for me and it felt so good to be there and I felt happy to be out in public again. I had felt homebound for so long. It helped me forget just for a little bit that I was so sick. Look at me, you would have absolutely no clue that I was as sick as I was. No clue.
This was my beautiful Sydnee’s High School graduation in May 2014. This was a good night, and I was praying so hard it would be a good night for her and for me. I didn’t want to remember this night with the pain of not feeling well. You can start to see that I’m dropping more weight in this picture.
This was October of 2014. I had been making improvements, but my health was still very unpredictable and unstable. We knew I had advanced stage Adrenal Exhaustion, but still did not know about my mercury toxicity at this point. You can see how much weight I had lost in this picture. It felt good to be down at a weight that I had always wanted to get to, but it was a sore reminder that it was because I was sick that I had dropped so much weight.
Marc and I were here at The Montage Resort in Laguna Beach celebrating his part in being the lead and closing the Series D Investment funding with Bain Capital. (I’ll talk more about that at a later time.) I was sick in this very picture. We had driven all day to get there and I was not well, but I was so happy to be there. The ocean and the beach are healing for me. It wouldn’t be until dinner was nearly over that same night that my brain started to turn on again. The next two days, and for the remainder of the time here, I felt ok. This was another successful weekend and it felt good to get away together for the first time in a year and a half. I had to keep moving and stepping back into my life, even if I didn’t feel quite ready. This was progress.
This was in November of 2014 at the Governor's Celebration of Innovation Awards ceremony. Marc was there accepting the award on behalf of Infusionsoft. I was actually feeling good for a months. When I say 'good' please know that is relatively speaking. I was still very sick and felt very sick, but my brain was feeling better. I had been on a tiny amount of progesterone to try to balance my hormones for about two months, that my liver was tolerating and this was a huge step forward. Due to my adrenals being severely compromised, my body used up all my progesterone to make cortisol, which left me with rock bottom progesterone. (I will discuss the adrenal 'progesterone steal' in depth on another blog post.) Anyway, I was feeling somewhat better. The very next morning after this night, I woke up in a massive adrenal crash. This one lasted a good two months. My liver quit tolerating the small amounts of progesterone I was on and in fact I became worse with the tiniest amounts of progesterone. My body and brain went back into complete instability with the adrenal crash. I will never forget Thanksgiving of this year at my Moms house. I could hardly function physically and neurologically, but I was trying to not let anyone know I was feeling so bad so the day wouldn't get ruined. I spent most of the evening in a bedroom crying and praying for help. It wouldn't be until January of 2016 that I would be able to start back on the progesterone again and have my liver tolerate it.
May of 2015. This picture is difficult for me to look at for many reasons. One, the sicker I was, the thinner I was. I could not eat if my body was in a big crash. Immediately when I got sick, I couldn’t eat. I would literally force feed myself food because I had to eat or I would crash even harder, and with every bite I would take, I would force myself not to vomit it all up. I guess this is common with mercury toxicity. I could tell when my body was crashing as I immediately lost all my appetite, and conversely I could tell when I was improving as my appetite would start to return. My diet had also completely changed as well. No sugar, no gluten, and I tried to stay off the dairy.
I will write more about this picture and the events of this week. They are both unspeakably painful and miraculous all in the same breath. I tear up in pain and gratitude as I remember what happened this week. God and my angels guided me and created one miracle after the next to get me to a hairdresser, who would get me to a new doctor. In the midst of all this I was also miraculously guided to someone else that would play a critical role in my recovery. Another member of my team was about to enter the picture.
Summer of 2015 – I discovered while in California that the root cause of my adrenals being so severely compromised was high mercury toxicity. I knew my body went toxic and that was the reason my adrenals were compromised and I got so sick - we just didn't exactly understand why my body went toxic. Now we did. I was also just about to discover the role my genetics played in creating this perfect storm. Genetics based medicine is cutting edge. These doctors have helped me heal and understand my body more than I ever knew I could. After I found out about the mercury toxicity, my body went into a crash for several days. I had finally gotten a long awaited answer, but it was more stress than my body could process. That’s one of the things that happens when your adrenals don’t work properly. Your body has an inability to handle stress. I crashed.
Summer of 2015. We had purchased the cabin solely for my health and recovery efforts in November of 2014. I needed to get out of my house, out of the heat and into nature where I naturally feel better. Nature is healing for me, and I will write about this at a later time. I spent the summer relaxing, healing, and researching. I started to get some answers and started to turn a corner in my healing. I was still very sick but I was doing better. This was a pivotal summer.
August 14, 2015. This was our 24th anniversary trip to Napa Valley. This was the first time that I had gotten on an airplane in nearly two years and it felt amazing. I wasn't sure when I was going to get on an airplane again. It was a major step forward for me to fly again. I had no idea if I would be stable enough to take this trip together with Marc to Napa Valley, but by the grace of God and some powerful miracles that happened, I got on the plane in confidence that I would have a good weekend away with Marc. I had complete confidence. I did have a good weekend. It felt great. My brain was stable for the most part. This is a picture of victory for me.
July 2016. This is a picture of Marc and I at the Montage in Laguna Beach. We drove up from Carlsbad to meet some friends for dinner there that night. June and July 0f 2016 have been the best two months that I’ve had in nearly three years. I felt like I could relax, and even forget about my illness somewhat. I didn’t have to think about it nonstop. It felt amazing. My body and my hormones seemed to really be stabilizing. My body was getting stronger. I wasn’t having crashes and things really started to look up. As Marc and I drove up to dinner that night, I remember crying a little in the car because I felt like my life was getting back to ‘normal’ a bit. They were happy tears. I could schedule a dinner in advance and I wasn’t afraid that I was going to crash and have to cancel. My body was definitely more stable and predictable. Oh it felt good.
Thoroughly enjoying an afternoon lying by the pool at Pine Canyon. I spent another summer of healing at the cabin. Feeling good. The next week, my body would go into a massive crash because of a doctor’s mistake this time putting me on a hormone that my body couldn’t handle. The tiniest amounts of a hormone. Doctor induced crash. This was the end of July. My other doctor - was not happy about this. Neither was I. It took me a full month and a half for my body to stabilize my hormones again.
This is the end of August 2016. This is a good picture. My body is stabilizing again, and I feel like I’m pulling out of the doctor induced hormone crash. What’s awesome about this picture is that I was able to take a walk in the neighborhood. It was a beautiful Sunday morning – 65 degrees with a slight breeze. I haven’t talked about this at all, but for the past nearly 10 or so months, I have been unable to take a walk and sometimes hardly able to stand. I had to monitor how much walking I did during the day so I wouldn't overdo it.
The mercury has caused my joints in my hips and my knees to be so inflamed that there were days I could hardly walk. Then there were days when I could get around with a limp, and other days I could get by in my tennies without a limp. Those were few and far between. My back has been unable to hold an adjustment for longer than about a week in the past 2 ½ years because of all my health issues as well. I didn't know I was going to get to deal with that, in addition to all my other issues. We even cancelled a summer trip to Hawaii because of me and my back. Plane tickets were bought and everything.
So I got a couple tips from the big guy above about what I needed to do to get the inflammation in my knees under control and to start healing my joints, (which I will share in another post.) For the past month and a half, the inflammation in my knees has improved drastically and my back was feeling so much better and holding an adjustment, I was able to walk - 1.1 miles to be exact - around this glorious neighborhood where my cabin is and in this unbelievably breathtaking scenery. Everyone in the neighborhood was out walking, running, golfing and I was happy to be among them. I walked without pain or a limp for the first time in nearly a year. Walking is a victory for me. If you see me walking, that’s a good thing.