The Blame Game

When my predictably happy daughter was younger, I got in the habit of blaming  meltdowns on her being over-tired.  As she got older, the blame often shifted to hormonal changes. 

I wish I could say she took comfort in my explanations but she did not. Whether I was right or not, did not seem to matter.  She balked at  me blaming  these  things.

I imagine the rheumatologist feels the same way when patient after patient blames everything on lupus or whatever chronic illness they are dealing with.  I am sure you have had him or her say to you “not everything is lupus” or how about “you are getting older”. I don’t know about you, but after dealing with lupus for the past 10 years, I have no idea what a normal 52 year old body is supposed to feel like.

So, if everything is not caused by the chronic illness that we deal with on a daily basis, how do we proceed when different health problems arise?  Do we hide our head in the sand and hope they will go away?

Thankfully, I  have a great family doctor.  When I had a cyst on my chest,  I was seen twice in the office, placed on antibiotics and scheduled with a surgeon to get it removed, all in record time.  He  feels  my health issues need to be taken seriously with lupus on the playing field. 

I run most things by my rheumatologist.  Sometimes, I have to be persistent visit after visit with an issue I feel is troublesome.  I had bad reflux issues that would  come for months at a time and then go, but  was told by doctors  that it could not possibly be lupus related. After several years, my rheumatologist finally told me  the muscle at the top of the esophagus can get inflamed just like other areas and cause this problem.

I know first hand how terribly frustrating it can be to struggle against what doctors tell you is going on and what you are experiencing. I had a specialist I finally refused to see, because of these very issues. In my opinion, we do not have to subject ourselves to doctors that are condescending, rude or know-it-all’s that refuse to listen to us or take us seriously.

Occasionally, I may have no idea something significant is going on like in the case of my recent dry eye and mouth problems.  (Problems, I am learning, that should not  be taken lightly. ) Keeping all my doctor appointments and communicating effectively with my doctors proved to be crucial in getting a diagnosis.  These things  along with  taking all my medications as prescribed are crucial for my stability. It is amazing how many people do not do these things and then find themselves spiraling downward physically.

While everything we go through is not caused by the disease we deal with, I think good doctors recognize that we are physically more vulnerable and  care for us accordingly.  If your doctor doesn’t take you serious, perhaps it is time for a  doctor who will.

Sometimes, even though the doctor, like my daughter, may not want to hear it,  the cause really is  lupus or______.  Hang in there. You are your own best advocate.  Don’t give up looking for help when something does not seem right and don’t give up on seeking God for a miracle.  Miracles not only happen instantly, sometimes they happen over time.  He is able. I have seen it. I have experienced it.  Until next time.

Disclaimer: This blog in no way negates our need for rest, eating well, exercise and lots of other good stuff.   : )

Be Blessed…Leslie Rose K

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There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle. ~
–Albert Einstein

Header photo taken by Leslie Rose K…recent view out our backdoor

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