Monday, September 9, 2013

Lupus and Auto-Immune Diseases

To Like or Not to Like..... It is dangerous to catch me on days like this. I am very ambivalent as to whether I actually like anything or not, so I am going to go with my gut instinct and go with a Not!

I have talked to no end on how much I not only do not like....but actually despise cancer. The very mention of the word causes me to almost hyperventilate and keel over. However, there is another disease(s) that I feel almost as strongly about. Lupus! For those of you who maybe don't know what Lupus is, it is one of a number of auto-immune diseases that can strike a person and over time dibilitate them. Unlike cancer where it is fairly obvious about what you have and then can be treated to some extent and even cured.....Lupus and auto-immune diseases are not quite as easily recognized and diagnosed or treated.

In the auto-immune categories are not only Lupus and it's variations but there is also rheumatoid arthritis, scleroderma, raynauds, fibromyalgia and the the list goes on and on. These are all diseases which live under the auto-immune umbrella and someone can have symptoms of just one, a few or all of them. These diseases are often hard to diagnose in the early stages and the person dealing with them often gets looked on as a hypochondriac or a complainer.....even by doctors. Often a person suffering with an auto-immune disease can go undiagnosed for a period of time...even years before the true culprit is found and even once it is felt that it is auto-immune, it is hard to know which disease they are dealing with. So the person suffers, often feeling like the symptoms are in their head and they go untreated. It is a living hell for the person.

My mother began showing signs of Lupus in her early to mid 20's. At the time no one really knew what it was. Hers started with an external rash on her arms that she had to keep covered at all times. It eventually spread to her face and on both cheeks she had a purplish rash which at night she would scratch until it bled. By the early to mid 1960's she had found a doctor who had been studying Lupus in its early stages  who gave her the diagnosis. She was put on the anti-malaria drug Plaquenil. She took that for the rest of her life. In 1968 Mom got pregnant with my brother and immediately the rash was gone along with all Lupus symptoms. The second she delivered though, her Lupus was back with a vengeance attacking her kidneys and causing glomerulonephritis. For the rest of her life she suffered from pain (fibromyalgia), joint swelling (RA) and rash flair ups when ever she was overly tired or under stress. It was also felt that Mom's recurring primary cancers and eventual death could have been the result of the Lupus destroying her immune system and thus her ability to fight the disease.

Lupus is a strange disease where it can stay external and cause things like external rashes or it can go internal and attack organs. Mom's did both. It also causes fatigue, body pain, a sensitivity to the sun and lowers the bodies ability to fight infection. To control Lupus it takes careful monitoring and often along with the plaquenil a person is on other meds to control or help the symptoms of the other affects of the disease such as dermatologically or like my moms.....controlling her glomerulonephritis. It is a careful dance done endlessly between doctor and patient.

Some of the really negative parts of this disease are that if not recognized, monitored and controlled it can eventually be fatal and it is hereditary. Out of my mother and her 10 other siblings, mom had Lupus and one of her brothers had raynauds. In the next generation, my generation, I have a cousin with full on Lupus and his sister has rheumatoid arthritis. After years of suffering with RA, hers went into remission when she was pregnant and the symptoms didn't seem to come back as strong after the pregnancy. These are the only ones that I really know have symptoms in my generation although there are 49 of us so there could be others. In the next affected cousins niece has scleroderma. She is in her late teens or early 20's and has been dealing with it for years. All, from Mom down to her great niece are connected. All started showing signs between the ages of 12 (I think) up to their late 20's. All will live the rest of their lives controlling their symptoms and it is likely that future generations will be affected and not necessarily just in that family but likely spread out through the entire family.

Of late I know several people who are close to me that have been diagnosed with auto-immune disease. One particularly close to me has been dealing with symptoms for the better part of a decade and is only now starting to get some definite answers. This person has dealt with a multitude of the symptoms (raynauds, fibromyalgia and the joint swelling and pain of RA). They have gone from being healthy and athletic to feeling as if they can't do anything and they always feel bad. I kind of knew several years ago what the diagnosis was going to be the more I saw and heard and of is looking like I was right. Sometimes it sucks to be right. This person is starting to get some definite answers and is also starting to get some symptom relief from meds, however the question of "what is next?" is never very far from their mind. It is a disease that because you often can't see the outward effects, it is easy to forget that the individual is suffering. I watched my mom suffer with it and now others close to me are doing it to. I hate it! IT SUCKS!

The good news is....most of the auto-immune diseases are livable. If the symptoms are controlled people can live decades with it. Mom lived over 40 years with it and it was cancer NOT Lupus that she died from (although the Lupus may still have been a factor). Diet and moderate exercise can help the symptoms of most AI diseases along with regular checkups (every 6 months) and knowing your body. As any changes happen they need to be reported and checked out. Also...if you have it, you need to make sure your family from your siblings down to nieces and nephews are aware that the disease exists in your family. The sooner the symptoms are recognized the sooner treatment can begin.

Lupus and all the auto-immune diseases suck. It is a life sentence of doctors appointments, pain, frustration and lots and lots of medication. It can take a healthy person and make them feel like the life is being sucked out of them. Stress and exhaustion can make the symptoms worse. Doctors who don't know these diseases can over look them or misdiagnose them. Once properly diagnosed though and put on the right medication for the right disease, the symptoms can be lessened and with proper care, exercise and can take on a new kind of normal.

So today......I do not like hate Lupus and all the auto-immune diseases that go with it! I wish for a cure and a pain free and healthy life for all those affected.


J'nelle said...

Very interesting blog. I didn't know any of this. I have heard of Lupus but did not know what it was. Thank you so much for sharing this information.

Anonymous said...

I found this very insightful. Great blog.