We are not a One Size fits all community!
Anyway, saving this article and sharing it with you because there is some good information here.
http://www.pituitary.org.uk/information/treating-a-pituitary-condition/hydrocortisone/
This article was posted in a group earlier, I had never heard of the slow release medication. It is still mind blowing to me that after all of these years, all of these patients suffering and passing from AI, that there are only a minimal amount of medications.
We are not a One Size fits all community! Anyway, saving this article and sharing it with you because there is some good information here. http://www.pituitary.org.uk/information/treating-a-pituitary-condition/hydrocortisone/
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Tonight my hubby and I watched a movie in the living room together, the whole movie. Sounds normal enough right? Not for us, sitting through a movie cause such intense pain that I get up and come to the bedroom to read or sleep. As many of you know,we have moved into a house and are slowly setting it up. Well today our couch set arrived! *photo from Master file .com First let me explain my section; it is a chaise that is attached to a sectional. The back reclines to a full laying down position, flatter than a bed! So I curled up in a quilt, reclined to the point of least pain, and watched a movie! Toward the end the pain was present, but normally I barely last 15 minutes. So that was foreign feeling #1. Foreign Feeling #2Getting into bed at night usually resembles this... The first half hour is muscles spasms, pain, and just my body reacting to the relaxing of muscles. Tonight, tonight there is some pain, but bed more closely resembles... There is still pain, but not even close to normal!
Maybe I will sleep a good sleep tonight. sure feels good to be able to join the family comfortably in the living room for movies and socialization! One more step toward "normal." Here is a view from my back porch last night, pretty right? With that comes rain, and with rain comes rain pains.
So today I am in bed, resting! I am pretty sure today would have been a recover day anyway, it was a busy weekend here, full of unexpectedness. One thing that was unexpected is the purchase of a couch! We just moved into this house a couple months ago and out furniture is limited. Tomorrow the couch will arrive, I will be able to come out of the bedroom and into the living room! Wait till you see it, it has a special reclining bed feature for me! But for today, I am bedroom bound and covered ears deep in warm blankets! Zzzzzzz. Accepting myself as I am, Perfectly Imperfect, makes life easier!I did not want to be the new and disabled me, I do not want to walk with a cane or ride in a wheel chair, I do not want to be unemployed and in bed all day... The list of "I do not want to..." can go on and on. I fought this new me, I was pissed off at the world, how was this even fair, why me, I want the old me back... But the old me is not coming back, I have accepted this, at least at the moment I have. So I took a deep look at the new me, there had to be something good there right? But when taking a look at someone you don't like it is hard to look for the good. So I started asking others, then from the seeds of my loved ones I began to nurture those good things in me and guess what? I have found some really unique and special traits in this new me, I almost think I like the new me better! Obviously I wish the pain, bad memory, and all of the chronic-ness was not here, but it is, so wishing it away doesn't help! But the new me... Over the weekend one of my best friends and I got this tattoo, to remind us always, that we are Perfectly Imperfect! To remind us, that we are amazing, and our "imperfections" make us who we are, and we are is pretty damn PERFECT, just the way the Goddess intended us to be!!!
Today, I am making friends with the Perfectly Imperfect New and IMPROVED ME! The body is capable of handling such pain it is mind blowing, chronic illness raises our pain tolerance because the pain never really goes away! Sometimes, if I have enough days where the pain is low enough I can function, I forget how bad the bad days feel... Then I am not so nicely reminded, it can even feel like the "worst pain I ever remember being in." Yet I know I have had worse days/weeks/months/years. On the bad days, when healthy people see me as being "weak and complaining to much," these are actually the days I am being the strongest!
It takes a lot of strength to make it through these days; not knowing if or when I will have another good day, facing the reality that this will go on the rest of my life. 😢 Next time you see someone "complaining" about how they feel, think for a moment, "What if you are only knowing a tiny fraction of the pain they are in?" "What if a kind word from you gives them that extra strength to make it through the day?" What if you could make a difference?💞 oh and one more thing... A good day for me does not mean I am getting better, it just means it's a better day than a bad day. 😉 i went to the lab on Friday, to test for the remaining two "conditions" that we can't seem to get regulated with medications. My thyroid and cortisol levels have not been where they should be.
First, I did not even freak out!!! WhooHoo!! Today the nurse called with results... Drum roll please... "Thyroid~ in NORMAL range, continue medication as you have been taking it!!! " Yay!!! "Cortisol~ in NORMAL range, continue medication as you have been taking it." Yay~ or not yay? Not yay, because I was being able to wean down on the cortisol, I was hopeful that my own cortisol was working again! I was warned not to get hopeful until my medication was down to 10, I'm still at 25, so my hopefulness was my own self induced disappointment! But Yay, because I don't need to have a higher dose, 20 is average for ongoing use. So now, ALL of my tests are in the NORMAL RANGE!!! Whoop whoop!!! I am writing to you today from the cozy warm comfort of of my King size castle (bed.) it's raining here and my body is protesting, but I figure we have talked enough about rain pains... So what to talk about? Lets talk about talking, socialization specifically... or maybe I should say social-less. Why I am a hard friend to have. 1.) I am not "dependable" to make plans with. Of course I'm not, I never know what symptom will raise its ugly head and prevent me from attending whatever we had planned. 2.) I never "want" to go anywhere. Oh yes I do, but I have to measure my spoons in relation to the activity, and social activities use up a lot of spoons. 3.) I'm moody. Yes I am! You try living like this in pain all of the time, forgetting my own name sometimes, medication alarms interrupting occasions and be a ray of sunshine every day. 4. You obsess over stupid things. Well, yes, I probably do, because a life in bed doesn't give me the day to day experiences that most people get, so As I swirl down the drain of depression I grip onto the walls of obsessing over tribal stuff to stop me from sinking! Not only that, but my "trivial" stuff is not trivial to me. This list could go on and on about the ways that socialization is a challenge for me! I know I am a hard friend to have, you should try being me and having to accept these limitations 24-7. Being me, in this social isolation is heart breaking, and I think I have forgotten how to interact socially, making friends is hard because I never go anywhere, and who really wants to build a friendship with someone like me? I I have tight group of friends on social media; they see my moods and encourage me to hold on during the bad days, they see a good day and celebrate with me, they support unconditionally, being there through the good and the bad. I am thankful everyday for these friends I have, the friends that ride the roller coaster with me, some times virtually and other tim a right by my side. ---- ummm I am falling asleep writing this. So will finish it later. So here I sit, behind the windows of glass, watching the world go by without me. oops, I forgot I was even writing this yesterday!
But today isn't much different, the blankets have taken me hostage and are holding me miserably and painfully in bed. With so many triggers it is easy to forget the reason for this pain! A storm lingers, blowing in and out, I hear the wind and comment on the rushing waters yet "I think I over did it." Or "I have no idea what I have done to cause this pain." Then suddenly it makes sense, it is rain pain! We can usually feel it coming before the weather station reports of rain. Our joints and muscles begin an ache that turns to pain. Our brains fog up. Our anxiety reaches new limits... Tonight, tonight my walking stick is barely helping with mobility, the bones in my feet and ankles feel broken, I even looked for swelling or bruises! The blankets are to heavy on my body yet the fever requires being bundled up.
After Saturdays near adrenal crisis I thought that my body was just exhausted. Even though Sunday it rained, I still blamed the AI! The pain has grown worse, I couldn't connect the dots, I even commented on the storm clouds. Tomororrow the the question will be, will I walk or not, it's not up to me. Because when it rains, it rains pain! I say that with pride- when it's been a good week!!!I say this has been a good week because I have accomplished things I cannot usually do! I cooked dinner (I thought twice but I can only remember Chili.) I did laundry and dishes a couple of times! I did some crafting! I went grocery shopping! to me this is a good week! I am a chronic warrior Goddess!!! I survive so many bad days, fight so hard to keep my chin up, even when I don't see the point of the struggle- I WARRIOR GODDESS ON!!! *photo credit~ I wish I could, but as with my others they are found on web searches and this one had no name! But has it really been a "good week?"
I was very near Addison Crisis yesterday, I rarely argue with my grown sons and yesterday an argument broke with one of them, but I guess it was more than my nerves could take! Well that and maybe that I over did it this week! Extra HC brought me back, although I am feeling its effects still today! I was also very sore most of the week, my body is not used to doing so much! One night I didn't even sleep due to the pain! So maybe it wasn't what would truly be called a good week! But... My spirits stayed up this week, as far as I can remember anyway, and that really helps! So good week or not, I still feel like a Warrior Goddess!!! By the way, if you notice I don't blog everyday, unless otherwise posted, it is a good thing! I try to have a positive perspective, I try to live as normal as I can, I try to see things on the bright side. I try, I really do! But it is exhausting! I did some craft projects this week, trying to be positive and create something amazing (which I accomplished!) but I'm in more pain than the normal bad pain because of it! I am so sick of pretending to be normal, healthy, and okay with it all! I am sick of surviving, I am sure there is more to the rest of my life than just surviving, riding this roller coaster of illness! There has to be more than overdoing it and being down so often and because of it.
But I guess surviving is sometimes all I get. Im not giving up! A long way from it! I still have goals for my life, they are different than my healthy goals, but they are amazing goals! Okay- off to another nap time for me!!! |
Cosmic Gypsy
The real raw experience as I journey through the waters of Chronic Illnesses. Archives
April 2016
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