A personal post from foundation contributor, Ilena Bickley
March 25, 2019
Now that I am over that horrible sickness (minus the fact that my mouth still has a metallic taste and I can’t really taste food), I was able to get back into my workout routine. I am really trying hard to listen to my body, not over do it, and to be ok with having to take it slow. It’s not easy, but I am doing my best.
Being sick took me out of the game for 2 weeks, which isn’t to bad. I also had a conversation with my Gastroenterologist about the stomach issues. This one is the one who is really interested in Addison’s Disease, she knows a lot about it and has been amazing. My other gastro, not so much. I am glad she reached out to me to see how she could help. She had me do an X-ray to see if my bowls were eliminating all the way, which they weren’t. She suggested that I do milk of magnesia every other day, and see if my symptoms would improve. She told me that when the bowls don’t eliminate all the way, it will cause bloating, nausea, pain, and other things. I don’t know why the other gastro didn’t do this. I have been doing the milk of magnesia since March 15th, and it has made a huge difference. I get just a little bit of bloating, but it goes away really quickly. Doing this has also helped with some weight loss as well.
The ablation that was done on my back has been so great. I haven’t had any issues. I am still careful because some positions irritate it, but overall I would say it’s about 80% better, which is phenomenal. I have been able to sleep a bit better (not great, but better), giving my body more time to heal.
My workouts have been slow going, but like I said, slow and steady wins the race.
I am running 1 mile and then doing light abs, legs, and arm workouts. Yesterday I noticed my stomach has been shrinking, which is AWESOME!!! I know if I continue to listen to my body and just take it easy, I can make it back to more intense workouts. Some days it takes away most of my spoons, but I am ok with that. I guess one good thing that came out of the weight gain, was that I got 2 new pairs of jeans that I absolutely love.
I am looking forward to adding a little more to my workout routine in April and running a little bit farther. I know that I will not be ready for the 10k that is in May, that I really want to do. If I pushed myself, I am sure I could, but I am not willing to put my body through so much yet. I am trying to focus on just being happy with who I am now.
April 23, 2019
My April didn’t go as planned. I was hoping that I would be out running and enjoying the amazing weather we are having, but my body had a different thing in mind.
I know that I was pushing myself more than I should have. I was still ignoring the tremors in my hands and legs. I was trying to prove that I could do all the things. My body quickly reminded me that I am not allowed to do all the things. I woke up at 3am on April first. My dog was scratching at my bedroom door, because she had to use the bathroom. As I sat up, I noticed that my head was shaking (like I was saying no), and that I felt the room was spinning. When I tried to stand, my legs couldn’t support my body. So I crawled to the door and let her out and then crawled back to my bed. I woke up around 9:30am and the dizziness and head nodding didn’t go away. I was able to get to the bedroom door and as I poked my head out, I told my husband that I was really dizzy. He said “your head is shaking.” I replied “call 911.”
I don’t remember them coming. I don’t remember being driven to the hospital. I don’t remember getting there. I was unable to keep my eyes open. I was having full body tremors, that I was not able to control, I could not walk or even lift my legs, and my speech was slurred and stutter (if that is a word). They ran so many tests on me. I had a full spin MRI, brain MRI, tons of bloodwork, and a spinal tap. They kept telling us that everything looked normal, but what was happening to my body was far from being “normal.”
They hospitalized me and I was sent to the neurology center of the hospital. Since I was unable to move, I had to use a bed pan. That was really embarrassing. I was also not allowed to eat, because I could barely swallow my water. I went 4 days with no food. Around day 4 was then upgraded to mechanical lift. I was also getting the tremors to calm down a bit, but my speech was still pretty messed up.
I was given heparin shots, which left some nasty bruising, and blood was taken every morning. On day 7, I was able to lift my legs just a little bit, but not enough to hold my weight. PT came in and worked with me, to see what the next steps would be. I again graduated to, solid foods, but only baby food type of food. At this point I realized that I hadn’t had a BM in 10 days. They started me on milk of magnesia, stool softener, and miralax. Just to remind you, I am still mechanical lift only or bed pan. Not only was it embarrassing to have a nurse and CNA come in to toilet me, my period decided to come early (talk about kicking you when you are down). It wasn’t until the 9th, when I finally had a BM. It sounded like 2 small rocks hitting the bottom of a plastic bucket, and that was about what it was. None of the doctors or nurses seemed to be concerned about it, but I was worried. They just kept me on the laxatives and hoped that I would finally have a good BM.
On day 9, I was able to put a little weight on my legs, but still not enough to go far. The doctors decided to move me into inpatient Rehab, so that I could learn how to walk and build up some strength. The tremors had calmed down a lot more, and the speech was starting to get better as well. The less I moved and talked, the better talking and tremors got.
My first day in inpatient rehab, I was taken to my room and the nurse came in and got my vitals and checked me in. All I wanted was a shower, after not having one for 9 days, using a bed pan, and on my period. I JUST WANTED A SHOWER. But I was told no, not until PT and OT saw me. I was so mad.
At dinner time, so when they brought me my food, the nurse also had papers for me to sign. As I was signing, I noticed how foreign my hand felt. It was like I didn’t have control of it. I was able to sign one page, the next page-my hand started shaking really bad and then the tremors started acting up. The third page, my brain and hand were not communicating at all. I knew what I was supposed to write, but my hand had no clue what was going on. I told the nurse I would sign it later. When she left, I broke down and completely lost it. I was so terrified of what was happening to my body. I didn’t know what to do, so I just cried. A CNA was coming in and I yelled “GET OUT AND SHUT THE DOOR,” and she moved quickly. I recorded a video in this moment, because I wanted to be able to look back at it and see me at my lowest point.
I was able to sleep, which was nice. About 7am the OT came in and told me it was time to shower. I was in heaven. I took way to long in the shower but I needed it. I felt human again. Going through OT she had me put 9 pegs into a board and then had me take them out. She timed me on each hand. The right hand it took me 54 seconds and with my left hand it took me 44 seconds. In doing this, the tremors got worse and my slurred/stutter speech came back. Later that day PT came and had me try to walk. I was able to take a few steps, which was good. My right leg didn’t feel like it was mine. It felt like I had been given a prosthetic leg and then told to walk. It was just not cooperating with my body. Each day I did get a little stronger. I gave the nurses a really hard time. I was constantly getting scowled for not calling them for things.
Finally I was released on April 15, 2019. I was so happy to be home. I have a lot of adjusting to do, but I know that I am strong.
One thing the doctors were not putting together was my Addison’s disease and how this played a factor. Not one of them knew a thing about Addisons and kept trying to dismiss it. They said that these symptoms were brought on by stress. And if they knew ANYTHING about Addisons, they would have been able to factor that in. I also learned that I had Acute Kidney Injury, after I got home and printed out all my test results from my 15 days there. I was NEVER told about that. I also had 5 other diagnosis that I was not told about and 1 was dated all the way back to 2014 (a year after I was diagnosed with Addison’s). I have been denied disability, but I did apply again after this newest diagnosis. I also got in touch with a news caster and emailed him my story on Addisons disease and how disability is viewing it and how the judge made the remark “If you can handle the stress of your autistic son, why can’t you handle the stress of a job?” I was sickened by this comment.
We really need to raise awareness. This disease is so debilitating and only gets worse with time, especially if you have other underlying illness. I am hoping that I can help change that. I have been sharing other people’s stories on my podcast (found on my blog page), hoping to raise some much needed awareness.