No use for an alarm clock

I’m tired of all the things I have to answer to before the sun is even up. At 6am I have to take my first dose of steroids for the Addison’s (No, not “make your balls smaller and muscles bigger” steroids) but I’m probably up before then. By the time 6am swings around, I’ve been up for 2 hours listening to music because I hurt everywhere. My nerves are on fire. The only thing that helps with this pain is the tramadol, and lately even that’s been iffy. The problem is even though it provides some relief, it also keeps me awake like a cup of coffee. So I can lay there and hope I fall asleep even though I hurt (which sometimes actually happens because I’m so used to it) or I can lay there and feel a little better but feel like I just drank a Monster.

I’ve been getting pretty severe nasal congestion lately, and that paired with the dry mouth from the Benlysta sometimes makes me wake up in a panic. I can’t breathe, and I’m so thirsty I may as well have been stuck on some fucked up island for 3 days. Good luck sleeping after that.

I am also having a problem with acid reflux. When I wake up in pain I also wake up with an angry burning stomach, and sometimes a sore throat. The sore throat could be caused by lots of things, like the Lupus, or allergies, but I think sometimes it’s the acid too. The problem is that there are some medications with which I cannot take antacid. Some medications make it worse, too. So I have to take meds and temporarily make it worse for a half hour til it’s been absorbed and I can finally take the antacid. I have gotten up to eat food before, but that’s a pain in the ass. Once I’m completely awake from doing something like that, there is no going back to sleep.

The sun coming up is a huge factor in making me wake up early. If it’s not pitch black in my room, I don’t sleep. I’ve managed to remedy that with a sleep mask, for the hours in the morning that I actually do sleep.

I think I’ve wrote about the itching before, that keeps me up too. My leg pain and restlessness is sometimes accompanied by itching, which I perceive to be  nerve-related. Some people suggest benedryl but it’s not an allergy, and I don’t have good reactions to benedryl anyway.

Sometimes when I take meds that make you drowsy, it causes me to have sleep apnea. So rather than knocking out, I wake up every 5 minutes in a panic because I stop breathing. The drowsy effect seems to depress my respiratory function. The weird thing is, I still have to take a tiny dose of something to make me sleepy. If I don’t take anything at all, I will lay there for hours without ever getting tired, and the next day I will have heart palpitations all day from being without sleep. I’ve been afraid to take the hydroxyzine for the itching because I don’t know what it will do to my breathing, and that means I have to waste an entire night of sleep to find out. And I have to plan on taking it, I can’t just take my usual dose of sleep aid and then wake up halfway through the night and take the hydroxyzine when I am itchy, because combos of meds make me have the apnea too, even if they are hours apart. It’s a drag having the sleep apnea because I am so tired, but I have to get up and occupy myself for a couple hours to make it go away so I can actually sleep. It’s a constant fight to balance everything.

You know what the bitch of all of this is? The mornings I actually have to get up early to go somewhere, are the mornings my body is like “Hey! I’ll let you sleep in today!”



  1. I had to leave you a comment in regards to a thread of media I followed to find you starting with TED talks about health. We have a lot in common including addison’s. I thought you might benefit from knowing that you are not alone and the work you are doing to track your physical and emotional well being may one day help us to unlock how people who are driven like you and me to get diseases like this. I plan to completely heal from my issues and believe that I can given the time, tools, and healthy relationships. There is a lot of new information on how healing happens and I encourage you try what we know works: Being grateful and being positive. Consider how you shape your perception of reality based on what you convey about it. What we are feeling is real, how can we make it real and serve as a productive force in our life? I use the disability of my illness to justify doing what I enjoy in my personal and professional life. One thing we don’t talk about with Addison’s disease is that underlined sense of physical oppression brought on by our own physical pain, low energy, and inability to communicate and maintain effective mental capacity when stressed. We work hard for the words we speak, let’s speak words of encouragement and share what we learn about being encouraged. We can cure this if not for ourselves, for the millions that are to follow.

    • I appreciate your perspective, and I’m glad it works for you. I find relief in acknowledging the negative aspects of being sick head on, rather than candy-coating the things that are going on in my life. Everyone feels the frustrations of being chronically ill, and they need to know that it’s ok not to be ok. There is no point in having a blog and expect others to relate to it if I don’t live out loud and come out with absolutely everything I feel. I’ve embraced the positive since day one, you’ll find it throughout my entries. Some days are better than others, but I am not going to single out one emotion. It’s unrealistic.

      • I agree with being honest about what we are feeling. You don’t have to candy coat things to be honest or to be positive. My approach has shifted from viewing any response as negative. I also have endometriosis and many of my abdominal organs are fused together or out of place. This is very painful as you might imagine and when I get my period painful lesions and cysts throughout my body swell, bleed, and sometimes even pulse with pain. It is hard enough to handle Addison’s and maintain a healthy brain connection never mind fight to have more communication with my brain than the numerous sources of pain signals and navigate the bleeding in my brain from the endometriosis and fight the anxiety attack brought because frankly there is too much going on… Let’s be honest about how much that sucks, but not deny that our bodies are in a sensitive position during those transitions/melt downs… I am merely suggesting that there might be opportunity in all situations without diluting ourselves. What if my period is an opportunity for my body to destroy these unwanted guests and turns out healing is a bitch? My experience has taught my that no one knows what is going on so I thought I would stop fighting the emotions and feelings inside my body and just listen. How often have you had to nurse your health and it seem counter-intuitive to others? I am sure you have lived that way for years and presently. What if our body with all it’s pain and suffering is only trying to heal and in our fear and misunderstanding we stifle the process. Please be honest, vent, cry, scream, sleep, write music, paint… Try to experience your pain without judgment and I know you will find that your body is fighting with you, not against you. The point is to be honest and open. Broken bones aren’t usually the result of impact alone but the impact accompanied with the anticipation and a muscular response. Identifying pain and weakness is true, but who’s being destroyed? your body or your disease?
        You are beautiful, smart, proactive, vocal, and strong and full of energy. You are already doing what I am suggesting. Don’t be afraid. One day you will be more functional than most! it will just come in the small successes of painful agonizing meltdowns and rebuilds. If your body has the chemical power to keep you up there might be a reason. Your heart will tell you when to listen, when to take control, and when to let something go. You are already doing it. I want you to know that you are doing a good job and not to be scared.
        Making that shift is the most empowering shift of all because when you understand yourself people show who not only understand you but who can help you understand more. Doors open.

      • I’m sorry your plate is so full. I know how you feel. It’s like when a new symptom pops up there isn’t just one doctor to see, there’s three different specialists that won’t be bothered to talk to each other. I never know if what I’m dealing with is the Addison’s, the Lupus, or the Chiari Malformation. Heck, they can’t even decide if I have Chiari, but I’m positive I do. I have too many of the weird symptoms that go with it. It’s too coincidental. I’m waiting on figuring out if brain surgery is in my future. I don’t do well when things are up in the air like that. I need a good solid yes or no to stay grounded. Even if they told me I do need surgery at least I could start mentally preparing myself for it. But this waiting around thing, it’s not for me. I hate it. You should be really proud of the way you handle things. While being sick blows, I honestly wouldn’t trade being able to see things the way I see them for anything.

  2. Sleep apnea is a killer and affects all body systems over time. I know you don’t want to do one more thing, but getting a sleep study and going on CPAP was the best thing I ever did. Headaches better, energy better, no need for naps. And now there is a mask free nasal pillow that you can get if your sleep apnea is mild. Another idea is the FDA approved mouth positioner–about 100.00. I had surgery, but mine was so bad it was that or a trach.

    • I think my apnea is probably central and not obstructive, although I’m not sure. I haven’t even been diagnosed. I went to see a neuro yesterday and told him but he didn’t have anything to say about it. He didn’t have anything to say about anything, really. Gonna get a new neuro. I really thing a CPAP would help with some of my headaches and take the worry out of falling asleep. I’m interested in checking out the nose-only mask since I only breath through my nose at night. The second I start mouth breathing I wake up in a panic because my mouth is so dry from the lupus, so that’s how I know I don’t do it alot, if at all.

      • My neuro center has a sleep center as part of it, and my doc took one look at my mouth and told me I had sleep apnea. LOL, for the obstructive kind you can look at the palate and it will practically diagnose itself. The central kind is harder and I believe harder to treat. I understand the fear, and how crappy it feels to wake up feeling like someone smacked you with a bat. Sleep is a balm to the soul and a decent night’s rest either makes or breaks the day. Of interest, I had part of my tongue removed, and I am much better now (although I still need something). There is a positioner for the jaw if you think you have any kind of obstructive component that is FDA approved–it is about 100.00 and is adjustable. I was thinking of trying it to see if I can stop CPAP. Not that I mind the machine anymore, there are some advantages to it actually, but I would like to sleep without a mask now and then, esp on vacation.

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