Advocacy

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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Advocacy

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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Advocacy

Is this pain for a reason?

I always wonder what causes my pain. I have it on a daily basis, but can never really pin point why I have it. I can come up with 100’s of reasons why I think I have it. I slept wrong, I worked out, I was stressed, I had to drive around, I ran errands, I ate something I wasn’t supposed to, I ran into an ex, my kids were driving me crazy, my husband and I got into a fight, blah, blah, blah….
Any one of these can cause me to have a flare or a crisis. But why the pain?
Our body is constantly at war with itself, which is a huge pain. It is battling against everything inside itself and on the outside. On a healthy person, this can take minutes, maybe an hour to fix itself, but with us…. It can take hours or it could take days.
I have gone to bed the last 2 nights in so much pain. It is easier for me to ignore it during the day. I can distract myself by moving around, but once my body lays down and tries to relax… That is when the pain can get so bad. I can’t get comfortable because everything hurts. I want to rip off my own skin most of the time, just to make the pain stop.. Not that I would actually do that.
Last night, while laying in bed, my body had that feeling you get when someone is poking you non stop and it gets really irritating, but you can feel it all through your body and you just want to punch the person…. I can’t punch the person and make it stop. All I can do is try to fall asleep and hope that it doesn’t wake me in a few minutes.
I often wonder, why God is making me go through this. There has to be a reason, and I know that he has one. I would just like to know what it is, so I can feel better about having to go through this. I want to be inspiring to others, but it’s so hard when you need the inspiration yourself. It’s hard when you spend days in bed or on the couch or just in your home because you are way to tired to do anything. That gets depressing and is a hard cycle to break.
Everything that used to sound fun to me, makes my skin crawl now. I hear all the ticket giveaways on the radio and start to think that would be fun, but then my mind goes to.. I would have to get dressed and there will be lots of people there, someone might be sick and they will touch me and then I’ll get sick. Will I be to exhausted to walk around or stand the whole time, should I bring my wheelchair just in case, are they going to have food there that I can eat, how late will this event be….. AHHHHH!!!! Do healthy people think like this?? I sure didn’t when I was healthy.
We have pain… daily. We are fatigued… daily. If you have your disease under control and managed… I give mad props to you, because 4 years into this.. I don’t. I feel like I start to gain control and then something else pops up. I see all these other Addisonians working out all the time, working, enjoying life with friends and family, and I wonder how they do this. Why is it so much harder for me? What am I doing wrong? Every.. body.. is different. Everyone experiences their illness in another way. So don’t let that get you down or discourage you. Your body is processing the disease differently and there is nothing wrong with that.
Keep fighting daily. Keep searching for answers. Keep raising awareness. I feel it’s coming soon.

Advocacy

Guilty!

I am sick.

I have an invisible illness.

I have chronic pain.

AND

I have guilt for it.

WHY?!?!?!

Everything that I have to go through on a daily basis, isn’t fun.

Most days I am in so much pain, I don’t even know if I will be able to walk at all.

Most days I am tired, but I still have to function.

It messes with my thought process and I can’t even recognize things or voice what I need, because my brain just can’t process the words I need. Yet, I feel guilty over having to cancel plans, or opt out of things my friends are doing, and even having to have my kids stay inside and play video games (which they do love) because I can’t do anything.
My diet change (whole food plant based) has helped quite a bit. It helps manage some of the fibro pain, but more symptoms have presented and I just don’t know what to do.

I took my oldest son to his orientation and I can’t tell you how painful that was. I was so exhausted, in so much pain, but I had to push through it. It took me a couple days to feel some what normal again, but I felt so guilty for being in pain and for being tired. I didn’t want him to be embarrassed because his mom looked like shit. I know in my heart that he doesn’t care. He loves me and he enjoyed me being there, but for some reason…. I feel guilty.
I can’t be the wife or mother my kids need… Let me rephrase that… I can’t be the wife or mother I think my family deserves.

They feel loved, they are happy, but I feel guilty because I can still remember the mom I used to be. The healthy mom who did EVERYTHING.

I am working on this, but it is hard. This disease pulls me into the worst depression and destroys the person I am working hard to be. It would be easier If I knew there was an end to this pain. It would be easier if I knew what days I would struggle and what days would be good. I have better odd betting in Vegas than I do on my disease.
Guilt eats at me everyday but I need to stop listening to my inner voice and listen to my family and friends. They love me, they don’t care if I miss events or bail on them, they constantly reassure me that they are always here for anything I need. Those words should drown out the negative words in my inner thoughts, but I am in my head way to much.

I want to try to work on this. I hope that you all can too.

Don’t let your inner voice be bigger than the ones who are encouraging and loving.

Lean on your loved ones, let them know how you feel, so their words will overshadow yours.

No more guilt.

-Adrenal Alternatives Contributor, Chronic Mom

 

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Advocacy

Adrenal Crisis: Another eye opener into why we need awareness

Personal Experience of an Adrenal Crisis.

July 5th- I was having a lot of weakness in my legs and I felt like I had run 10 miles. I couldn’t catch my breath when I was talking. I started to feel really different, something wasn’t right. Ended up having to use my wheelchair because my legs couldn’t support me. I got really dizzy as my husband was pushing me to the couch, and then I couldn’t breath. I was having a very hard time getting air. 911 was called and they took me to the ER.

The Dr. refused to give me hydrocortisone until he talked to my endocrinologist.

He ordered a chest X-ray and CT scan, bloodwork and urine sample. All those came back great (They were testing for heart attack symptoms), which we told them several times, I was in an adrenal crisis.

Still no hydrocortisone.

They gave me meds to slow my breathing. Once it hit the IV my whole body tensed up, I was shaking, I couldn’t move and I couldn’t breath. I started to fade, the nurses voice and my husbands were in the distance. I was scared because everything was black and they were next to me but sounded like they were so far away.

Then I stopped breathing.

The nurse was yelling at me to breathe and was pounding on my chest with her fingers, she kept telling me this and pounding on me, again I slipped into the black and her voice was far away. She slipped some oxygen on me, finally, and I was brought back. After that everything leveled out.
Since I wasn’t having a “normal” adrenal crisis, they sent me home.

I rested all day but I still couldn’t use my legs, not even enough to use to get myself in the wheelchair. It was really scary. For all of us.

July 6th-I was just exhausted (but that’s normal). I was able to eat without having that horrific pain. (July 3rd and 4th I did Ex-lax and water to see if that would clean up stomach up enough where I could eat without the pain, nausea, and severe bloating).

This was a reminder of the severity of my disease and that I need to really take it easy, not push myself, and let go of the things (and people) that cause a lot of stress in my life.

I’m so proud of the boys for stepping up the way they did. My middle son took my youngest to the bedroom and kept him calm and distracted while the EMTs were here. My oldest held it together, tried to keep me breathing, was telling the EMTs over and over that I needed my shot, what disease I had and that they needed to give it to me. He answered all the questions, because I couldn’t talk, he even corrected my husband about my age.

My husband handled it okay. He was scared and broke down a bit, but my oldest did good at calming him as well. I’m thankful they did amazing at advocating for me. I’m so proud of them. I just hope that doesn’t happen again, because I was terrified.

I can’t tell you how often this happens, people denied hydrocortisone because the doctors don’t know anything about Addison’s disease.

Instead of listening to the patient, they deny them the one thing that will save their life. I get that there are procedures, but most people (like me) are told “no.”

I know of four people in groups I follow on social media (in the year I’ve been apart of it) who have died after going home from the ER because the doctors refused to give them hydrocortisone. They were told they were fine or over reacting and that nothing was wrong with them.

This really angers me that there is no understanding of this disease and doctors don’t take it seriously because they don’t know or don’t understand it.

I want to make my voice heard and I am doing what I can to bring awareness.

-Chronic Mom, Adrenal Alternatives Foundation Contributor

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