Talk about a huge slice of humble pie!

It happens. Unfortunately, Rey (my husband) and I have run into a string of bad luck starting with my lupus which resulted in osteonecrosis and Shrinking Lung Syndrome. This economy hasn’t helped as he has been unemployed for the past 3 three 1/2 years. This has given us no choice but to leave these precious Rocky Mountains, which have been such a wonderful backyard and place for many day trips, in search of work elsewhere (of any kind!) and a NEW START! If you can spare the cost of a latte each week or a guilty pleasure or a hug, (we love hugs!) we’d be forever grateful. You’ll be taken to a descriptor page for our internet fundraiser, to donate, simply fill in the box and click “GIVE.”  Thank you and God Bless, Annie

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My letter to lupus and all things autoimmune

May is Lupus Awareness MonthWhat better time than now to let lupus know what I think of it, so I decided to write a letter to lupus, telling it that you’re no longer welcome in my body. My experience with you began when I was 19 and I was diagnosed with Sjogren’s Syndrome, another autoimmune disease. It was only a bother when I was young, dry eyes, and infectious parotitis. But then, Sjogrens‘s began affecting my life.

Idiopathic Thrombocytic Purpura (commonly known as ITP) was diagnosed with a painful bone marrow biopsy and shortly thereafter, I was told that I couldn’t have children, I was told that you were the reason I suffered the greatest loss of my life, not being able to have children. I’m told that you orchestrated an attack on my ovaries and Premature Ovarian Failure was the reason my husband and I would remain childless. A family was my dream!

Then more asymptomatic and quiescent years. Then, what I thought was the flu with a high temp (106 degrees should have clued me in!) turned into treatment with high dose IV steroids for an allergic reaction to a medication. Two years later, you were diagnosed and shortly thereafter came the diagnosis of osteonecrosis (ON). So many theories abound about the etiology of ON. Lupus, in your ravaging of my body, you also orchestrated antiphospholipid syndrome

You’ve altered my life, robbed me of my late 40s, all 50s and I’ll be darned if I let you rob me of all my 60s. I’ve been told that now, lupus has given way to Sjogren’s Syndrome as my primary diagnosis. This ‘morphing’ from one autoimmune disease is not uncommon. But, the damage from lupus has been done. I have ostoenecrosis (ON) in most joints and I have had a knee, a shoulder and an ankle replaced.

The crowning blow and icing on the cake was that the autoimmunity gave me this thing called ‘Shrinking Lung Syndrome.’ I get short of breath with the least bit of exertion. My doc and I have thrown every med and and treatment at it, to no avail. For years, the ON in my ankles was so painful that as the years went by, I walked less and less and and eventually, I only rarely left the chair because of the tremendous pain from ON and shortness of breath. But, part of the problem seems to have been solved by an ankle replacement. I’m undergoing rigorous physical therapy, but I have a good 8-10 years to make up for, and that doesn’t happen overnight.

Not only have you robbed me of a good 30 years of life, participation in that life, children and caused undue pain; but the life of my husband has been changed. He has been with me through all the hospital and ER visits and driving me when necessary. We filed bankruptcy protection today. Not only are we indigent because of high medical costs, but our future is uncertain. Lupus and Sjogren’s, did you think about the impact on my life and so many other lives, when you entered out bodies? Well, you’re an unwanted guest: GET OUT OF HERE!

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“You’ve got lupus!”

“I feel like I’d been kicked in the chest by a horse,” were the EXACT words I used to describe what I was feeling to my doctor. He ran every test known to God and man, and then a few more, and still came up empty-handed. Then one day, he had a suspicion of something, ran an EKG confirming an incredibly fast heart rate, my respiratory rate was fast, and my chest x-ray only confirmed what he suspected. I had a pleural effusion; from what he didn’t know, but the instructions were, “meet me at the hospital, do not go home and dilly dally and pack a bag, do not pass ‘go’ do not collect $200! I think you get the gist that he felt that my getting to the hospital was urgent!

Yes, I had a pleural effusion and I don’t know how much fluid was removed from the lining (pleura) of my lungs. Some of that fluid was cultured and from that the docs received their diagnosis. You have lupus. I didn’t know it, but my life had changed.

That’s how I received my diagnosis, and you? I’d love for you the share, with me and others who read here, how you received your diagnosis and what symptoms you experience most.

There are so many ways in which lupus manifests itself and in this post, we’ll concentrate on lupus involvement of the lungs. Patients may develop pleuritis, the most common manifestation of lupus in the lungs. Pleuritis is inflammation of the pleura, the external lining of the lung.

The most common symptoms of pleuritis are shortness of breath and a SHARP PAIN ON INSPIRATION. Sometimes, fluid accumulates in the pleura: pleurisy; also a very painful condition found in @ 50 % of patients with lupus.

Another condition, PNEUMONITIS is an inflammation of the lung tissue itself; inflammation that doesn’t involve the pleura. This only makes sense, because lupus is a disease of inflammation.

The cause of pneumonitis is often bacterial or viral or fungal, but most commonly bacterial or viral. When someone has pneumonitis and their lung tissue has accumulated  fluid and the lung cells exude this fluid, the condition is called pneumonia. The fluid is usually called phlegm and contributes to the signs of pneumonia.

Vasculitis is an autoimmune disease affecting the blood vessels.  When vasculitis causes lung problems, it is because the inflammation involved in vasculitis, ‘cuts off’ necessary blood supply (and blood carries oxygen and nutrients) to the lungs.

Multiple sclerosis is an autoimmune disease that affects lung function: the muscles involved in respiration are weakened and because of this weakness of the lung muscles, pneumonia is common in multiple sclerosis patients.

Because lupus patients are often immunocompromised, either BECAUSE THEY HAVE LUPUS, or for treatment they receive for their lupus, lupus patients can develop fungal infections of the lung and tuberculosis.

Pulmonary hypertension is another manifestation of pulmonary involvement of lupus as is Shrinking Lung Syndrome. Both involve considerable shortness of breath. For these two complications of lupus there is treatment, but not cure.

There are more pulmonary manifestations of lupus AND of autoimmunity but space limits me to coverage of the complications I have noted.

Bronchi, bronchial tree, and lungs.

Bronchi, bronchial tree, and lungs. (Photo credit: Wikipedia)

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