Category Archives: Daily Update

I don’t tolerate the methotrexate pills well at all. They make me nauseous. So I was given the shots to draw up on my own once a week.

My last visit revealed my labs were almost normal!! Yippee!! So I began my own taper with the methotrexate injections. Yup. It’s true. I am a dare devil. I feel great and I have more energy. I’m not requiring 12 or 14 hours of sleep anymore. I’m actually doing well with 9.

I do not recommend this to anybody in a flare. I’m just reporting that after many months this feels right.

It’s been quite a few years since my last flare. I am estimating 7 or 8 years. What a sad day it was when I flared after so many years.

But upward and onward !!

Stay healthy my friends,

Claudine

This is not a sad post. It just is what it is. Having a rare disease is like this. Rashes have slowly disappeared , strength is coming back,, I’m getting out more and doing more , carefully. People see a happy, joyful and cheerful person. They have no idea how much energy it takes. A constant weigh scale of what I want to do and what my body will allow me to do. Choices I am constantly weighing. This is why I decline many invitations. My energy makes me parcel out carefully my energy for daily tasks or risk a terrifying flare, extreme pain and many medications that make me sick along with many emergency room visits to stay alive. But still, this is not a sad post, life is beautiful I have so much love and I stay joyful, happy and cheerful. So extremely grateful to be alive every single day 🙏🏼❤️

Stay healthy my friends.

Claudine

I have been procrastinating. It’s a strange feeling of “if I don’t go to the web page, maybe I can post something more cheerful. I am sorry I waited. Things has been awful. But, I’m glad to be alive, so I guess this balances things out. My flare on 1/28/19 was a doozy.

What a nightmare of a flare. The symptoms came on like wildfire. The telltale cough. The feeling of freezing, although everyone else is warm, the evening arrives and the drenching sweats and chattering teeth so hard I feel as if they will shatter. The jaw pain from the spastic muscles of chattering.

The emergency room visit and IVs and the explaining and explaining, blah blah blah. They called my specialist and we started the labs and Medrol.

But why is the human mind like this ? Why do we think if we ignore it, it will go away. It’s a strange phenomenon.

It’s been 2 months. I have flared twice during this time.

One week when I just got sick of the Medrol and I said “SCREW THIS!!” In more colorful words.

I was fine for 24 hours and then……WHAMMO‼️‼️‼️‼️‼️I had never had a flare kick me in the ass so hard !

My fever went sky high -(102) I was vomiting repeatedly and had chills and chattering teeth and joint pain. And the strange thing, my eyes were leaking yellow pus and were so swollen shut I couldn’t see. I was terrified I was going to go blind. The other additional symptom was a raised, very red and pointed rash appears. NOT the typical rash. It was firm rash, very isolated to hips, thighs and abdomen. It went away in 2 weeks but it was odd.

I started the medrol and the MTX again and have not had a huge repeat.

Although, I cough when I get very tired and I feel like I’m going to collapse and cry from fatigue. The intensity of the fatigue is whole body pain. I drag my feet. I cry.

It sucks, but I’m alive. And if you’re reading this, then you are alive too.

And I am so glad you are here with me.

Well, time for the methotrexate injection. Live on. Love on.

Stay healthy my friends,

Claudine

The flare started on January 28th. It came on so fast it was strange. It was like the dragon said “I’m back! And you better watch out !”

I have been on the Medrol for 6 weeks now and the methotrexate injections. It’s working well.

I am feeling better. But, foolishly, one day I was feeling fine and thought, “I must have caught this flare quickly and I can stop the meds!!! ‼️WRONG‼️. Very dumb of me. That evening I had symptoms that were so intense I was scared. The sweats and chattering teeth woke me up and when and I stood up, I started vomiting and coughing so violently.

The vomiting turned into a dry heaves nightmare. I could barely catch my breath. During this the sweat poured into my eyes from my drenched sweaty hair, burning my eyes. The intensity broke the blood vessels in my eyes. My husband held me but I felt awful that he needed sleep to be at work early. He is so supportive and loving.

Eventually the episode stopped. I was so weak. I sat in a chair I keep next to the shower due to the fatigue I have from showering. I get exhausted very easily.

I’m very diligent now. I have no desire to repeat my dumb idea of “Hey! I must be cured now!!” Only 2 weeks into a flare 🙄.

So, I know, this too shall pass. I just wish it would hurry it’s stupid self out of here.

Stay healthy friends,

Claudine

Not at all like the years before when I flared, the doctors had no clue what to do with me. As my labs, back then climbed and my ferritin level reached 14,000. Right now we caught it 3000.

All echo and heart monitoring is normal. Thank goodness.

I know that stress is a huge component to Stills flares. The rash has come on slowly over the last 10 days, but I justified it as hives or emotions from having these broken bones for 6 months.

I didn’t take the rash seriously until 2 days ago when I lost all appetite and got chills around 7pm. I went to sleep and drenched my night shirt.

Last night my teeth chattered all night and my body was covered in chills as my drenched the sheets with sweat. Hip joint pain has started. The routine was to use a 100% cotton robe to absorb all the sweat and change into more shirts every couple hours. Always have towels on the pillows to catch the sweat pooling up on the sheets and drenched hair.

But now it’s time to go to the hospital. Get my labs drawn. I pray that the major organ affected is anything, but please God , not my heart. I have seen 2 patients in 24 years die when the heart is attacked by the disease.

So now, I ask for prayers. I will rest and let my body return to normal with medications and IVs

The evil visitors have arrived but they will not be here long.

Prayers please friends.

Claudine

It’s been a journey I never want to take again. It’s been absolutely horrible this ordeal.

In August I slipped on our flooded tile floor when I came down stairs. The floor had flooded with an inch of water everywhere. When my foot slipped on the water I hydroplaned across the floor. My left leg went under the couch where it was pinned.

My leg swelled immediately. Thank goodness my husband was home to free me. The next day I went to the doctor thinking I had a sprained ankle. The doctor didn’t do much he said just take care and use pain meds. The xrays has showed NOTHING.

A few days later of screaming all day and night I went back. They did and MRI and found my femur was bleeding out due to a severe contusion and a femur hairline fractures.

2 months later I kept telling them my foot hurt and was swollen and I cried in pain and could not walk without crutches. He sent me to a orthopedic do not that also said I has a sprained ankle.

I went home crying and in pain.

2 months later I went back again because I couldn’t walk without pain. I went to a new orthopedic MD and he found I had 3 broken bones in my foot. For 4 months I’ve suffered and cried in pain. He put me in a cast and use a knee scooter.

The stress of all of this and and now the cast for a month has caused extreme stress in my body. I was so cold last evening and could not warm up. I shivered and tries to eat dinner but went to bed instead. I slept 13 hours and had 2 drenching sweat episodes.

I prayed please no, please dear lord, do not add a flare on top of this. Please dear lord I beg.

This last month going on 6 months now, there is light at the end of the tunnel. The cast comes off on Thursday. I have not been able to stay at my home due to the stairs and only the kitchen and living room is down stairs. So I have been staying with my mother. I miss my husband , I miss my cats, I miss my horses, i miss living my life. I miss my life.