Remaining Positive when Diagnosed with MSK
Getting diagnosed with a chronic illness is not a pleasant experience. Usually there are scores of information about the illness in general, and even more documented accounts of how people deal with it. Some illnesses are rare, and unfortunately do not have as much information available. Medullary Sponge Kidney is one of those diseases, affecting only about 1% of the population, roughly 1 in 5000 people. The range of emotions, both chemical and psychological, that occur in people and their families with MSK are worth noting.
When you first get diagnosed with MSK, you have probably been through a battery of tests. It began when you visited your doctor with lots of pain, excessive amounts of urinary tract infections, frequent nausea, and unexplainable fatigue. All of these symptoms have taken their toll on your psyche, and been a drain on the overall family morale.
Doctors did their part by subjecting you to some of the most excruciating exams, as they ruled out all sorts of horrendous diseases, and even questioned whether or not you were a hypochondriac. Let’s face it. You have a rare disease that your general physician will not be apt to look for right away.
It may have even come to the point that you ended up in the Emergency Room, and got diagnosed with a kidney stone. After this happens a few times, your doctor finally begins to question the number of stones you are producing, and realizes that you may have a rare condition.
It is difficult not to feel elated when you finally hear those words of confirmation, stating that you were not imagining things after all. You feel a sense of relief, and a hope of getting back to normal with proper treatment. It is a good day when you first learn that you have Medullary Sponge Kidney, a day for you to take back the control you lost, when your emotions dealt with the drastic possibilities of positive outcomes on all of those other tests, some of them for fatal diseases.
Early Stages of MSK
Now that you have some answers, it is time for treatment. The only problem is that there isn’t a cure for Medullary Sponge Kidney. Whether you like it or not, you get to keep passing massive amounts of kidney stones for the rest of your life. You have been diagnosed with a condition that is chronic, and will stop you short when you least expect it.
What an emotional roller coaster this has been! In the beginning, it’s even worse because your body has to get rid of the buildup of kidney stones that you’ve accumulated for several years. It seems like every time you turn around, you’re incapacitated with pain and infection from too many kidney stones. Rest assured. This will pass in time. After having the disease for a few years, your body will adjust to its production of kidney stones, and you will not pass nearly as many as you do in the early stages of the disease.
In fact, you will learn to manage your pain, and deal with your condition in a way that fits your lifestyle. Emotionally, you have to, or you will become depressed and unable to function. Since the diagnosis of MSK happens in your early 30’s to 40’s, you probably have a young family to care for, and you must learn to cope with this disease for them.
How MSK Affects Your Family
Kidney stones are probably one of the most excruciating things anyone has ever endured. They have been declared as being more painful than giving birth to a child, without the bundle of joy to take your mind off it. This is not an exaggeration, and it is difficult for family members to watch their loved one suffer so much.
Young children don’t know what to do. Since the disease affects women more than men, they usually end up watching their mommy double over in pain. This is the woman who’s supposed to take care of them, and now they have no way of taking care of her.
Mother’s watching their children’s sadness might try to fake it, and pretend it doesn’t hurt so much. This works up to a point, but the pain of kidney stones is never dismissed easily. Sometimes it’s better to tell your kids you need a nap, and not let them see what you are going through.
Spouses often feel helpless. They want to do something, but with a chronic illness like MSK, there’s not a lot anyone can do. You have to communicate your needs, and limit your own frustration for the sake of your family. You have to make the most of those weeks when you don’t have kidney stones, and remain mentally at peace when you do.
Living with MSK
Medullary Sponge Kidney is not a bad diagnosis in the grand scheme of things. Once you get through the first few years, where your body cleanses and adjust itself to this condition, you can live a relatively normal life. Episodes of kidney stones decrease dramatically, and when they do happen, you’re accustomed to treating them.
MSK is not a fatal disease, nor is it diagnostically linked to other illnesses. It is a rare condition that you were born with, and it happens to make you produce a lot of kidney stones. These in turn produce scar tissue, but no one ever died from that.
You and your family should continue to enjoy life, knowing that there may be times when you walk a little slower, or sleep a little more, due to episodes of kidney stones. That’s okay. In fact, that’s a lot better than waiting for a transplant or getting dialysis on a regular basis. The reality is, you got off easy, and if you can allow your emotions to accept this fact, you will have a much better time living with this disease.