Featured

9-2-08

My life changed on Sept 2nd 2008.  I work in various hospitals. I am an occupational therapist. My endurance has changed ever since I almost died of this mystery illness. On Sept 2nd, 2008, while working in the ICU, I began to feel cold, really cold. After working with a patient, 3 hours later, I had chills. But figured it was the flu coming on. Within a few hours, I had developed a huge lump under my right arm-pit that hurt like hell.  It was  about the size of apricot, sticking out from under my skin. I had trouble keeping my arm down. I was cold, very cold. I kept working but decided to leave a bit early, after my boss saw me and said it was best If I got some rest at home. It was 112 degrees outside. I walked through the parking lot to my car, shivering, freezing, my teeth chattering, muscles shaking as I walked through the Arizona blistering heat to my car. It must have been about 120 degrees when I got into my car, but I still turned the heater all the way up. I drove home, teeth chattering, frozen cold… That  night I awoke, the lymph node under my arm, in searing pain, teeth chattering, and a fever like I had never known before in my life, 103.2

I couldn’t raise my arms due to pain in my shoulder joints. They were somehow becoming frozen, red, inflamed, swollen. Every movement made me scream in pain. I could not lift my arms to drink a glass of water. When the fevers broke, drenching sweats followed with the feeling of ice water being poured over me.

I figured I had the flu. But 3 days later, temperatures still to 103, chills, body aches, muscles shaking and body aching, teeth chattering so hard I thought I would crack them. An Arizona summer, 114 degrees outside, and I would sit on the patio with a sweater, wool coat and a blanket around me. Swollen neck glands so tender I could not swallow. Tylenol gave me a 3 hour window of temporary relief around the clock. And as soon as it wore off,everything started all over again, day after day, night after night.

My abdomen was getting swollen, painful. I would push on this area to try and stop the pain. I would sit on the floor facing the sofa and push my abdomen into the couch cushions to try and find some relief for my abdomen. It never occurred to me to think of my liver.

1st visit at Mayo Clinic, both physicians who saw me felt I needed a strong antibiotic, Levaquin. So far, blood showed a normal white limit. I did as I was advised, I took the medication.

The pills gave me extreme diarrhea ,vomiting and dehydration to the point of delirium and hallucinations. Still nothing had changed. Spiking fevers, drenching sweats when the fever broke, 3 hours of  relief and then temperature went right back up again. The next day my husband took me to Mayo emergency room again, with a very swollen, tender abdomen. MD thought it was due to my diarrhea and vomiting from the levaquin. He gave me I.V. for fluids, then sent me home.

3rd emergency room visit a couple days later at 11pm to Shea Hospital. The ER doctor palpated my liver area, and I almost jumped to the ceiling as I cried out and screamed. I was admitted this night.

Tests followed for the next 10 days, along with checking for 53 different and viruses. CT scans done at 1:30 am, X-rays at 3am , blood cultures ever 4 hours, both arms,  lumbar punctures, specimens taken every few hours. Blood chemistry labs revealed that my liver enzymes were dangerously high. My Ferritan level was at the worst time 14,000. 103.2 Fevers, shaking, chills, diarrhea, drenching sweats when the fever broke every several hours and a rash was developing. I looked like a raspberry.

Dry heaving and vomiting constantly. It was 8 days without solid food so far. I was on a liquid diet. All the blood vessels in my eyes, and around my eye sockets were bloody from broken blood vessels. It looked like blood would spill from my eyes if I leaned forward.

On the 7th day in the hospital, my veins collapsed. A PICC line  was placed in my left arm to my heart. This made things easier. At least no more having puncture my arms to have labs drawn at 1am and 4am. I could not tolerate any light. My eyes were so sensitive. I felt hopeless. At points suicidal. One painful day blended into the other. My rash appeared in the evening at 7pm with all of the symptoms, but would mysteriously disappear by morning. The MD in the evening would document a rash covering my body, but the morning MD would not see it. They were puzzled.

On the 10th day I was released in a wheelchair. I could not walk more than 15 feet.I went to recuperate in another city with my parents since I could not stand for more than 2 minutes or walk more than 10 feet. They came to get me and drove me. Nothing had changed. In fact I was now worse than when I went into the hospital.  I slept 18 hours a day for weeks. I had lost so much weight, down to 99 Lbs from 130.

No diagnosis or explanation of what was wrong with me . The infectious disease doctor simply said “sometimes we just never know why some people get so sick, I wish you luck” as he wrote my discharge papers. It was September 9 when I was admitted and September 21 when I was released from the hospital.

The way I found my diagnosis was with the only energy I could muster. For 9 weeks, with blankets and frozen joints, 103 fevers, drenching sweats, a salmon colored rash that covered my entire body and came about at 7pm each night (one of the hallmarks of this disease), teeth chattering, swollen lymph nodes through my body, elevated liver enzymes. I had enough energy to search the internet only 1 hour a day. I typed the same symptoms in the computer every day. One day the diagnosis Adult Onset Stills Disease appeared. I made copies of this information and eventually, shameful, humiliating experience with another physician, I begged and pleaded for a referral. I finally found my way to a Rheumatologist, Dr. H. who has been seeing me ever since December 18, 2008.

To learn more, please read my pages:
My Diagnosis Didn’t Come Easy
What Is Adult Onset Stills Disease.
Evil Visitors

Thank you for taking time to read my journal. Maybe somehow it can help another person.

Stay healthy my friends.

Prayers for the best year of health for my and others with AOSD

It wasn’t the best New Year’s Eve Ive ever had, but we take what we are given and do the best we can with it.

Wearing dark glasses looks a bit mysterious, but also kind of intriguing! I have 2 choices, I can play that I am a famous movie star that doesn’t need paparazzi blinding me with camera flashes! Or I could play the victim of a rare stupid disease that has caused so much pain and strange ailments that go along with it. So, I choose glamorous movie star!

So many doctors. So many tests. So much pain. For this eye situation, No rhyme or reason, and I am exhausted from trying to find out.

So, onward and forward with a year filled with wishes and prayers and so much love to share with you all. When life gives us sour grapes we make……..champagne !!! And we celebrate that we are here to send out love and gratitude for the best year ahead with energy galore to do the things we want. We give thanks for life and a heart and soul to care for others. Full steam ahead with compassion for all.

Best wishes my friends for a beautiful year ahead.

Claudine

Now it’s the Left eye. UGH!!!

For the past 4 weeks my right eye was terribly inflamed , extremely painful and horrible headaches all night. The ache was so bad that I would lay flat during the evening with ice packs over the eye to get relief. My sleep was non-existent for days and days. I lay all night with my hands on my face trying to soothe the pain.

The curious thing is the 1st eye doctor I went to told me that he had seen this in young children with Juvenile Stills disease but never in an adult.

I thought to myself “well, here we go again with the “never seen this before”. It’s always so depressing when I hear this because it means “I have no idea what to do to help you while you are suffering so badly”

He gave me steroid drops that I used as directed 3 times a day without any relief for 2 weeks.

I went to a new eye doctor , this time a neuro-opthamolgist

She examined me again and again, same as the 1st doctor, my eyesight is 20/20 in my right eye and my left eye strangely bionic . I can read the tiniest print without any problems at 56 years old. She said she had never seen this before. Well….again another 1st. I feel like I could make the Guinness book of world records by now.

The new eye doctor had nothing new to recommend. She recommended more lubrication eye drops (but eye is gooey enough and it feels SO gross). But, I did as I was told and the headaches remained.

Finally my husband suggested to try amoxicillin. Although both doctors said it was not bacterial. However, within 2 days the right eye cleared up. But now the left eye is extremely inflamed. It just started 24 hours ago. And the headaches again. This is so depressing.

I have an appointment with the neuro-ophthalmologist in 2 hours.

I have read online that many auto-inflammatory diseases and also auto-immune diseases can cause Uveyetis or also called eye inflammation of the sclera. It’s a dangerous situation that if not treated can cause blindness. I am fortunate that my eye exams are normal and not affecting my eye sight, eye pressure or structure. I just have Awful pain and gross clear goo and fluid and headaches.

I will start on the amoxicillin again. I ran out the day my right got better 2 days ago.

I pray that you all never get this from this stupid disease.

Please stay healthy my friends. I am wishing you all a very healthy new year.

I will keep you all posted.

Claudine

Staying positive in a world that can be overwhelming and sometimes negative.

It sure seems that many people are increasingly overwhelmed and losing their cheerfulness. Many of the people I know, appear to be under more stress than ever. This makes me feel a desire to help them sort out their feelings and ease their stress. But I cannot take on the role of therapist for everybody. And besides at this time in my life, when I do try and assist too many people, I become depleted and extremely fatigued.

I do know for sure that my own situation could bring on a depressive attitude, and it has. It is not easy having a rare disease that takes over your life. Even the simple abuse of energy becomes a draining situation that can take away my energy for days. A daily to-do list can feel like a never ending bottomless pit of obligations. This is when I must remember to use my learned skill of mindfulness.

The only way I have learned to stay calm is to stop and know that if I do not finish the to-do list the world will not end.

But here’s the clincher, what if the to do list includes doing things for people, getting things done for people, arranging tasks for people? What then? You can’t just stop and say no. When people are depending on you, this is when it becomes overwhelming. I had a dream the other night that I was a piece of toast and many birds were pecking at me, biting pieces of flesh off my body, taking taking and taking. I woke up feeling drained.

I decided that I must not allow this to happen. My body is being robbed of energy. And with my illness, I don’t have much to spare.

When I practice mindfulness, I feel a relaxed feeling. I feel a release of pressure. I focus on my breath and turn my attention inward. I hear the ticking of a clock. I feel the rise of my breath in my body and the exhale . If I could just maintain this feeling, it would be wonderful. But I must remember that this my life. I make it what it is. If I want to feel calmness, I must cultivate calmness. If I want peace, I must cultivate peace.

Beware of steroids causing osteoporosis :-(

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

Take this to help the magnesium loss
This was August 6th 2018. It took 1 solid year to heal the 4 broken bones.

That stupid dragon. It has nothing on me ! And never will!!

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

Never feel guilty for Saying “No. I need rest” Just put your paw up!

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.

“But you look fine. What do you mean you don’t feel well?”

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

Kick that dragons butt!!!!!

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.

Kick some dragon butt!!

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