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Really Fantastic Article on Life After Pulmonary Embolisms

having a particularly bad night: chest pains, shortness of breath, sweats, tachycardia.

Recovery from PEs is rough- and scary.

Luckily, tomorrow I see my new cardiologist about a holter monitor for the racing pulse.

This article helped me so much:

https://healdove.com/disease-illness/Recovering-From-A-Pulmonary-Embolism#_=_

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All About Lupus and Lupus Flares: Having a horrible lupus flare today. Can barely move.

Lupus sucks.

I have not had a full blown flare in years. Yesterday’s debacle was enough to propel me into the most painful, debilitating one I can remember in eons. Mine were obviously caused by the stress of yesterday and my joints ache, I can’t move, super tired.

High dose vitamin D3 has usually kept mine under control- as well as practicing stress control- but I’d been lapsing on the D3 lately.

The bottom mind is: Stress CAN cause dis-ease. It’s unhealthy and can harm you.

For those who don’t know what a flare is, from this page:

Most lupus flares are preceded by warning signals or arise from certain conditions.

Systemic lupus is a disease that can affect many parts of the body. A lupus symptom that is active for a while is called a lupus flare; if the symptoms go away for a period of time, it’s referred to as remission. Some doctors prefer to use the term “quiescence,” which means a quiet period, instead of the word remission.

“I don’t like to use the term remission since lupus symptoms rarely go away completely,” says Jennifer Anolik, MD, PhD, a rheumatologist and researcher at the University of Rochester Medical Center in Rochester, N.Y.

If you have lupus, you may have symptoms like fatigue, muscle aches, and joint pain most of the time. More severe symptoms such as exhaustion, weight loss, fever, and anemia can occur during periods of a flare and may require treatment with steroid medications.

“Lupus flares can be classified as mild, moderate, or severe,” notes Dr. Anolik. “Symptoms of a mild flare might be the appearance of a lupus rash. A very severe flare could cause fluid collection around the heart or even kidney failure.”

What Causes a Lupus Flare?
If you have an autoimmune disease, like lupus, your immune system incorrectly turns against normal cells and tissues in your body. In lupus, the immune system makes proteins called “auto-antibodies” that can attack many parts of your body and cause inflammation. Anything that triggers your immune system can then cause a lupus flare. Triggers may include:

Ultraviolet light. “UV light is a common trigger for a lupus flare. Exposure to the sun typically causes a lupus rash but may also activate more severe systemic symptoms of lupus,” notes Anolik.
Infections. Any type of infection can stimulate the immune system and this may result in a lupus flare.
Stress. Stress can be emotional or physical. Lupus flares are common after physical trauma, surgery, or emotional events.
Pregnancy. Lupus flares are common during pregnancy and in the period after the birth of a baby.
Starting a new medication. Certain drugs, such as sulfonamide antibiotics and the over-the-counter herbal drug echinacea, have been shown to trigger lupus flares.
Stopping a drug. Always talk to your lupus doctor before starting or stopping any medication. particularly Plaquenil (hydroxychloroquine). “Studies have shown that lupus patients on Plaquenil are less likely to develop a lupus flare,” says Anolik. “Patients should know that if they stop taking their Plaquenil it can cause a lupus flare.”

What Are the Warning Signs of a Lupus Flare?
If you have lupus you should be aware of the signs or symptoms that can indicate when a flare may be starting. Some common warnings of a flare are:

Becoming overtired or feeling as though your stress level is building up.
Having more frequent or higher fevers than usual.
Aching in your muscles, or more painful and swollen joints.
The development of a rash.
The development of any symptoms you have not had before.
Remember that lupus can affect almost any area of your body. It is important to report any new symptoms to your lupus doctor so you can get treated for your lupus flare quickly.

How Often Do Lupus Flares Happen?
“Every lupus patient is different, and the number of flares is unpredictable. If a patient is having a lupus flare every month, I would be concerned that their disease is not as well controlled as it could be. Three to six lupus flares a year is about average but we also have patients in quiescent stages of the disease who go for much longer periods without a flare,” notes Anolik.

Lupus flares are a normal part of the disease. You should become aware of the warning signs and see your doctor when they occur. Researchers are actively studying ways to prevent lupus flares. “In the future we hope to have tests that can better predict a lupus flare and allow us to start treatment even before symptoms occur,” says Anolik.

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If I Died Tomorrow…

If I died tomorrow, I would have lived a wonderful, full, exciting life.

I’ve been so blessed- I’ve done EVERYTHING I’ve ever wanted to do, everything I’ve ever dreamed of! I’ve lived all over the world, visited so many places, met so many wonderful people.

I have 4 amazing, healthy children. I’ve had so much love in my life that I can scarcely believe it. I’ve traveled, had infamy (fame is no fun), met incredible people, been poor, been rich, been thin, been plump, been spoiled, been resourceful, had wonderful health- and scary bad health.

I was diagnosed with the autoimmune disorder lupus in my 40s- and with Factor V Leiden (a clotting disorder) when I was pregnant with Maisie. Both are genetically inherited. I had 2 TIAs (small strokes) in my early 40s, which were explained by the conditions I have.

Honestly, I think it’s the adversity that’s the best wake up call. The Universe sometimes has to grab you by the scruff of your neck and shake sense into you. It happened to me and thank GOODNESS it did. I would DEFINITELY consider my ‘conditions’ to be a blessing in disguise. They made me appreciate life and stop and smell (and plant) the roses.

If you would have told me 15-10-even 7 years ago that I would be starting over with a newborn baby at 45, wearing almost no makeup, not worrying about my wardrobe, not doing theater or acting anymore, I would have laughed at you.

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so not me anymore

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vanity can be ok, but too much focus on it and you lose sight of what’s important

I was a shallow bitch, lemme tell ya. I was full of anxiety and worried about things that didn’t matter at the end of the day.

Maybe the stuff I love now doesn’t matter to 99.9 percent of people, but it does to me and makes me so happy- which is enough.

I spent a majority of my life with chronic depression and anxiety and now- POOF!

GONE.

It’s amazing to me. Being happy is amazing to me. I love it.

Now I sit here thinking about bucket lists and the only thing I can think of is this:

I would love to live long enough to watch my kids all grow up and have grandkids.

That’s it, that’s all.