Category Archives: Daily Update

Well, if it isn’t one thing it’s another right? Remember back on August 6th when I slipped and broke my femur and they didn’t find the other 3 broken foot bones until 3 months later ? Then the cast but the extreme pain brought on the flare? Well, my Rheumatologist had me do a DexScan and low and behold, the bones from my waist down have pretty bad osteoporosis. Crap! He kept wondering how so many bones broke that day.

Well, now we know. So I’m taking very high calcium building pills, Bone Up. I will photo the label to share this.

I am just hoping that I can rebuild the bones and be strong. The problem is that the high steroids cause SO much urination that leaches calcium from the body. This depletion also caused me to not be able to sleep well due to the imbalance of calcium and magnesium. Although my potassium was low too.

So now I also take a very high powered magnesium called, Cramp Defense. Buy on Amazon. Kind of pricey but SO worth it just 3 of these babies a night and sleep really well. Now I’m down to 2 a night because my body is holding on to the magnesium well.

If you are on steroids please take your calcium and magnesium and prevent the broken bones.

Stay healthy my friends

Claudine

I found a unique site that asks to write a sentence about your rate disease. I wrote this.

Today I had a wonderful and unique experience. I was washing dishes. I know right ? Wonderful, not!! But, really! Something shifted. I felt happy. I felt calm and serene and home.

Yes, home. When I recall all the days I’ve spent in hospitals this past year, 2018, being home in my kitchen and hands in soapy, hot water washing my dishes I felt peace. I didn’t really think about this until I was almost finished. But when I noticed it, I smiled and i felt content.

I smiled and I realized that it’s the mundane tasks that make our life. It’s the routines, the activities, the daily tasks that we privately, daily, routinely do that make us who we are. Nobody else does the tasks that we do, exactly like us. It’s ME. It’s you.

Grateful and so happy to be here. So happy that I’ve had this shift in attitude. Be thankful for the simple things. There are many people who will never get to enjoy them.

Stay healthy my friends.

Claudine

It has taken me a long, long time to learn to say, “No, I can not. I need to rest”. There is no need to apologize. But, I often catch my self saying, “Im sorry”. I am not sorry that I am taking care of me. I am not sorry that I am putting my health 1st. I am not sorry that you will have to wait. I am not sorry that I have learned to be mindful of the signals my body is giving me to sleep, rest, tune out society, or tune in nature, or unplug from the world. This learned habit of saying “Im sorry” needs to stop because I am not sorry. Being mindful of your energy and fatigue level and overall sense of health is a learned skill. It takes practice. 

I used to immediately say, “sure, no problem!’ Or, “YES I can do this” or “ Of course I can meet you” Or my old personal favorite, “Absolutely!” Until, my body broke down and my health slipped away. And, it still took me years to learn how to say, “No, I can not”.

Why is this so hard in our society? I know I’m not the only one. Our society values productivity. Productivity means in many people’s mind, constant motion, a full calendar. It’s dangerous for our heath. And, the inability to say no, means that you are putting other people’s needs, desires, wants before yours and with limited energy, this is very dangerous. 

It’s a “YES DISEASE” and it can kill you, well, maybe not everybody, but certainly almost killed me. This odd ‘yes disease’ I have found, comes from the subconscious feeling that you need approval, validation or fear of making people mad if you say “No”. But really, safe guarding your health shouldn’t make anybody mad at you, and if it does, it sounds like a whole new set of nice people around is in order!

It’s taken me a long time to learn to guard my health and say no. Saying “Yes’ was a habit. But, guess what? Saying ‘No’ can be a habit too and a healthy one. 

Stay healthy my friends.

It’s so hard to have a disease that is so unpredictable and sometimes invisible. This is when I have to put my paw up and say “I’m needing rest and can not participate.” This is hard to understand from friends, especially when the steroids pump you up and you have energy….until you plummet into the fatigue abyss. This is when you need 15 hours of sleep.

This is when you, alone, know how bad you feel.

It’s the last day of the steroids and I start the injections of methotrexate tomorrow. Crap. The shot hurts and the medication side effects hate me. But it’s better than throwing up the pile of pills I used to try to choke down along with all the other slew of pills.

It’s just life. It’s my life. The hard part is having to cancel on friends and events because I know I won’t have the endurance to meet the ladies out, ride my horse, get out of the house early, last the whole day with collapsing with chills. It’s hard when I need so many hours of sleep. It’s crappy. But then again, I have to cheer that I’m alive. I wake up and see and hear the birds and go play with my horses.

My labs are off. I’m trying so hard to keep the dizziness at bay. The last thing I need is a calamity.

Yup. My name should have been Jane aka Calamity Jane. (Was she really clumsy?? Or is it a myth?)

The rash is very faint. Thankful.

Well, that’s it for now. Just keeping you all up to date.

I am hoping and sending up prayers that you all are in remission to never see the dragon again. I just heard of a patient that had a bad ending. The dragon won. Damn that dragon !!!🤬😡🤬😡🤬. I cried for her family. She was only 36. 😢

Please stay healthy friends.

Drop me a line to let you know how you all are doing.

Claudine

My morning Coffee Doodle today. The steroids are kicking in. Love them/hate them. I am sure you know what I mean. The night time drenching sweats are dwindling and almost gone, the rash has not shown up in 24 hours now. We caught this flare SO early. YEASSS!! Kick that dragon’s butt!!!! — feeling hopeful.

There is NOTHING to like about having AOSD. We feel like we are dying. But if you can catch your flare in time, before you have to go to the hospital and before the frozen joints set in before the screaming out at night due to dragons grip on us, and before the teeth chattering and drenching sweats and muscle spasms that make me cry for ours, can say I love steroids.

I consider catching this flare this early as nirvana when the high proscription of meds begin to kill the dragon before he’s taken complete control.

Strange to say Nirvana right? But, when one lives through, literally hell, with this disease, catching it before the worst symptoms sets in is pure joy.

And this time, THIS TIME, we are catching it early!!! YEASSS💪🏼‼️

Kick that dragon butt!!!!!!

Outside

And the steroids, right now I consider it the breakfast of champions, is like eating Captain Crunch with strawberries and cold milk while watching the sun rise and hearing the birds chirping!

It’s the simple things that make me happy.

Thank you for being there.

Stay healthy my friends.

Claudine

Does anybody else start this way ? When you feel your body changing possibly heading towards a flare, and you can’t get warm? Feel freezing and unable to get warm? Right now, trying to avoid a flare after a very traumatic situation that landed me in the hospital overnight with heat exhaustion due to the trauma situation. It’s been a week, but have been sleeping 12 hours and today the inability to get warm. Sitting outside. 104 degrees in Arizona, wearing UGGs and a sweatshirt. 😢. Trying to avoid a flare. This sucks 😞

Mostly because after 8 years of no flare, I flare bad January 28th and got off all meds June 1st.

I thought I was free and clear. -[sigh😞]

Thanks for being there for me.

Stay healthy friends.

Claudine