Addison’s Disease and why it changed my life.

Post from contributer, Ilena Bickley

 

I know a lot of you who follow me already know my story pretty well. But a lot of what I deal with, just on the Addison’s Disease, is more than I like to admit.
Do I think my life would be easier with just the one diagnosis? I believe so. Only because I see a lot of fellow Addisonian’s doing really well on their journey. Am I jealous of that? OH YA! Of course I am. Who wouldn’t be? I know for a fact that they have good and bad days, and they probably post more about their good days than their bad ones. It just depends on who they are wanting to reach. You can totally live an amazing and adventurous life with having Addison’s Disease, but I also know that you will pay for it.
There is a lot of factor in when you are working out, traveling, going to events, and so on. Up dosing is a MUST for most Addisonians. Even when we have to go to the dentist, we have to up dose. It’s so strange to think about that. But that little bit of stress, that you might not even know you had, will come back and bite you later. We have to avoid people who are sick. Our immune system is not as strong as a “healthier” person (this is why I carry a mask in my purse). Our bodies get fatigued way faster and it takes us longer to heal and get well.
With all those factors, it is harder for some of us to want to venture out in the real world. Lot’s of us like to stay in our little homes, safe from sickness and stress. I am one of those people.
Every story is different. Every person handles this disease in a different way. Yes there are some similarities in symptoms and activity, but they will take their toll on us in different ways and to a different extent. I know that when I get a cold, it doesn’t present like a normal cold (nose running, coughing and sneezing). Nope, mine is a full on, my body can’t move. Any bit of air that touches my skin, feel like it is trying to blast my skin off. I lose my voice and all I want to do is sleep, but I can’t. My bed hurts my body, my clothes hurt my body. I can’t seem to keep my eyes open, I can’t eat anything and I have to force myself to drink water. This kind of sounds like the flu. The flu is way worse for me.
When I exercise, it will drain me for the rest of the day, and sometimes even the next day. My body is just like, “nope. We are not gonna participate with you any more.” This is not for all exercise. I can walk for about 15 min briskly. I am able to jog for a couple mins. And that is about all my body will allow. I have done yoga a few times, but it takes me a few days to recover from that. I can make it through the whole 60 min class, but I am struggling and I don’t do all the moves. But my body likes being in the heat.
If I have to travel more than two hours, I have to up dose. Driving really takes its toll on my body. I really don’t know why though. I feel relaxed, listening to my audible, and not stressing-or at least I don’t think I am stressing, but my body deems it as stress.
There is a lot I can’t do that other Addisonians can, but I always have to remind myself that most of them only have the one diagnosis. I have more.
I try to stay positive for the most part. I try to keep my stresses down. But there is only so much you can do. I got into such a dark place that it scared me. I had to seek help, and I am so thankful that I did. I love being able to raise awareness. I love being able to share other spoonie stories. I love being an advocate for such a rare disease. I can dwell in the dark place or I can choose to shine and help others.

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Photo by Abhiram Prakash on Pexels.com

Don’t get discouraged fellow spoonies. There is so much we can still do (from the comfort of our beds even). Hold your head up high, self advocate, and reach out to others, because they will know what you are going through and they will help lift you back up.

 

-Chronic Mom’s Club

The Way We See Ourselves and Why That Should Change.

Post by foundation contributor: Ilena Bickley

 

I am no expert or psychiatrist or anyone to really give any advice. I am one who suffers from a few chronic illnesses that leave me debilitated at times, so I feel like I have some good advice to give. Take it as you will.

I have been battling Addison’s Disease since 2013 and one thing it has taught me is that, I do not listen to my body…Not at all.

I have tried and I always feel like I got a handle on it, but in reality, I am nowhere near close to “listening.” Don’t get me wrong, at times I do. I do really good and I think that is where that little voice sneaks in and says “Hey!! Look at us doing so good, lets push ourselves and see what happens.” I don’t like that voice. That voice has led me to many ER visits. That voice has made me miss out on a lot of my kids activities.

Sometimes I feel like “Addison” got a little lonely, so she decided to call on a few other friends and throw a party in my body. Only it’s not a fun party. For the diseases, I am sure they are having a good ole’ time, but for me, the one who has to house them…Not so much. It’s like trying to manage a frat house on your own, but you are the one who has all the rules that are working against you. You can’t kick any of them out, they keep you up at all hours, they do things to you that make you so sick you want to throw up…NOT FUN!!

The past couple months I have really stepped back and looked at who I have become and all the ways I have had to adapt. I feel I have done so much to try and help manage my pain and fatigue. I have tried ways to lessen the bad days and try to gain more of the good, but you know what…I have failed so many times….. Or so I thought.

The one thing that I never got the hang of was listening to what my body was trying to tell me. I always saw it as the enemy that was trying to kill me off. I had to step back and look at things differently. Maybe my body isn’t trying to kill me off. Maybe my body is giving me signals, signs, warnings, that I should be listening too.

What would happen if I actually took the time to stop hating it and start listening to it? What if I were to love this body. Treat it with respect. Listen like I would to a friend. What would happen then?

So that is exactly what I did. I started to treat my body like a friend, someone who means the world to me. Do you know what I discovered?? A lot more than I thought I would that’s for sure. Now, I am not going to say I am better or it has “cured” me, but I have been in a much better place and that is where a lot of healing takes place. Acceptance is the key. We can’t change our situations. There is no cure or quick fix. We are stuck in these bodies, so why not show them some love. Why not listen to them.

I went back to watching what I eat closely. Not eating to many things together. That way I was able to track which foods were making me feel like crap. I looked into the AIP diet and what foods might be causing some flares. I loved the WFPB diet, so I am still playing with that. I don’t eat a lot of meat…Rarely… Maybe 2-3 times a month. I cut out nightshades (which was really hard to do). No more almond M&Ms or sweets that I don’t make myself (besides ice cream-I have found one that I do well with). I still try to avoid dairy as much as possible (still only having that about 2-3 times a months as well). Eggs and me get along just fine as long as they are fresh from a chickens butt (which is good since we now have 5 chickens). I can no longer have artichokes and that broke my heart. So, I am learning from and listening to my body and in turn, we have been doing pretty good.

Sleep and me still battle, but I do what I can to show him love. We meditate together. We read or listen to audible. I just try to relax, so he can relax and we can peacefully co-exist. Sometimes we fight, but for the most part, we are getting along much better.

Exercise is a bit tricky. Since putting on 40lbs, it was really hard to look at myself. I have tried so many things and I think I was just to much in my head about all the things I couldn’t do and didn’t want to listen to all the things I could do. So, I embraced what I could do and started to enjoy that. I embraced what I looked like and started to tell myself I am beautiful. I have been going to yoga with my youngest son the past week and I only do what I can and focus on the fact that I am actually doing some movement and bonding with my son.

Again, I am not cured by any means and I still have some bad days. For the past week though, I have had a pretty good week. This means that I only had slight tremors 2 days this week that didn’t manifest into something bigger. I had only 1 headache this week. I was able to make it through a whole week without needing a nap (resting-yes, nap-no.) I only had one flare from something I ate and was able to figure out what it was and eliminate it for the future. So this might not sound like a good week to most, but to me, it was good and I am looking forward to more like it.

I hope that you can find a way to look at your situation differently. I hope that you can start to love and listen to your body. We only have this one and it’s better to love than hate.

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Adrenal Disease Broken Down

I was sent this link (https://ndnr.com/autoimmuneallergy-medicine/addisons-disease/) by a sister Addisonian. I was really shocked at how broken down this was. I have never came across an article that was so informative. I learned so much and I really wanted to share it with those who are suffering from Addison’s Disease or know of someone who is.

I read through the article (please excuse the pronunciation of things, I know I butchered so much of it) and give a little bit of info about what I was told/not told, tests that were ran or not ran for me, and what steps I want to take to make this disease less of a burden on my body. (www.chronicmomsclub.buzzsprout.com or head to my website to hear the podcast).

Please check out the link as well. Advocate for yourselves and don’t take “I dont’ know or your results look normal” for an answer. You know your body better than any doctor.

I think we all get stuck in the “what do I even say” moment with some of our doctors. Especially those who do not listen. When I was recently in the hospital in April, none of the doctors would even consider looking at my diagnosis of Addisons Disease as a culprit to what was happening to my body. One of them even said, “I don’t know anything about that, but I am sure this has nothing to do with it.” How would he even know when he just admitted to not knowing anything. With Addison’s Disease, stress is a big trigger and with what the doctors were saying (my body was to stressed out), would make me want to research that a little bit more. If my root disease is Addison’s, and stress makes it worse, and you are saying that my body has been over stressed and now is presenting as “functional neurological disorder”, why wouldn’t you try to factor in Addison’s Disease?

I get that they only touch on this during medical school, but I believe that our disease should be more that a paragraph or two in a medical book. We are more important than that. This isn’t something we can recover from. This is our life…Forever.

Keep fighting and keep raising awareness. If we don’t….Who will.

 

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Ilena’s Fight With Adrenal Insufficiency

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.

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Test after test with no results.

A powerful post on the truth of addison’s disease by foundation contributor, Ilena Bickley.

 

One of the most frustrating things about having Addison’s Disease is the extreme exhaustion. I want to do things, but my body doesn’t allow for it. I have a life to live, but I can barely make it from my bed to the couch. I can’t explain what causes the exhaustion. I have tried to track what I have done, but no matter what it is, there is no consistency. One day I can rest all day long and the next day, I am even more exhausted.

One day I can push through and get everything I need done and the next day have all the energy in the world. No matter what I do, I can never predict when I am going to have a bad day.
All the other strange symptoms that come with it as well. I have no clue where they are coming from or if it’s from Addison’s. I can’t tell if one day I will be able to walk, or have nausea, or extreme joint pain. I know that I have gotten worse and when I go to the Drs. they want to run tests to see what is wrong. And of course the tests all come back normal. Why are they normal, when I don’t feel normal? Is this my new normal? When do you stop going in for tests and just accept all the new, weird, painful symptoms? Can we do that? What are the risks for ignoring them? So many unanswered questions.
I just had my colonoscopy and endoscopy on Tuesday and that was hell. They ended up taking some tissue and sent it off, but everything else looked good. I have horrible pain, bloating, and nausea when eating, so why does it all look normal? I know this is not in my head. I want to be able to eat again, but if the results come back with normal results, what do I do? I am already vegan. This issue just started over a month ago so I am at a loss of what is going on.
I like to look through Facebook and Instagram to see if other Addisonians are having these same issues. I know every Body is different, everyone has multiple autoimmune diseases, so all the symptoms are different (a lot are similar though).
When will Drs. start taking us seriously? I wouldn’t wish this disease on anyone. It is such a difficult life to live. People don’t believe you…. Drs. don’t believe you. You feel like you are losing your mind and then start to question your own symptoms. No one wants to feel like this. No one wants to live with this kind of pain (at least I hope not).
I can understand when results always come back as normal. It’s hard to believe that something is going on when there is no proof. There is no proof of a lot of things, but people will search and search to find answers…. So why is it different when it’s a person’s body. I think that autoimmune diseases are known about enough for their to be more research done on it.
I recently watched Brain on Fire. It was like watching my own life (to a point). They ran test after test and said she was fine, but there was something wrong. She had amazing parents who wouldn’t stand for their answers and they pushed. Finally one Dr. knew something was missing and she went seeking help and found it. The Dr. worked hard and finally found out what was going on. I know if I was a Dr. I would want to exhaust every resource in order to find answers and then keep going. We are not guinea pigs, but to some extent I would be willing to try things in order to get answers and help the research in curing autoimmune diseases. There is so much out there on cancer, but autoimmune diseases seem to be just as common as cancers.
Even though your test results might not show anything, please don’t give up. There might be some Dr. out there that will look harder and find something that will change the game for all of us. Keep fighting and keep advocating for yourself. I know it’s exhausting, but we have to keep fighting.

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