All About Me….

Family Photo

This is me at 9 months with my brother, Jon and parents

Being a patient with chronic pain and illnesses, you begin not to tell others all the time what is exactly wrong with you.  Sometimes I forget that I have told people who I suffer from chronic illnesses and pain but I don’t go into any details.  Today, I want to let you know exactly what I suffer from and for how long I have been living like this.

In The Beginning

My story beginning when I was in my late 20’s.  I had just gotten married to my first husband and my health began to change a great deal. I started to lose weight very easily.  And I was sick to my stomach all the time.  No matter what I ate, I would either lose the food by vomiting or diarrhea. Nausea was my new best friend and I ate Tums like there was no tomorrow.

I finally had enough and started a long road of doctors, test, and surgeries before the answers became clear.  My gastroenterologist was the best doctor that I could find and I trusted him with everything left in me.  He began by admitting me to the hospital for a “long weekend” to have every test known to man performed on me. And yet the results would come back inconclusive or negative for what he was testing for.

Confusing The Specialist

Being a well-known doctor in his field, my GI doctor served on a board with other gastroenterologist and would discuss patients that would confuse them or not follow the book of stomach and GI issues.  Unfortunately for me, I was one of them. After many weeks of this board reading through my history, test results, and complications, it was a unanimous decision that I was born with chronic pancreatitis and that my gallbladder needed to be removed ASAP. My grandmother had also had chronic pancreatitis and I inherited it from her because the only other way you get pancreatitis is by having issues with alcohol.  Since I couldn’t even keep in water, alcohol wasn’t my issue.

Less than 4 weeks later, I had my gallbladder removed.  It was a blessing that they ended up removing my gallbladder because when they did take it out, it was found to be not working.  The surgeon also found that my bike ducts are malformed and instead of being in a “Y” shape, mine is in a circle and the bile would just go round and round not emptying on a daily basis. This explained a lot and the first year after surgery, I felt wonderful and could eat most anything I wanted.

Fast forward 20 years and I still have issues with my GI system almost on a daily basis.  I still suffer from pancreatitis which has now affected my blood sugar, making me diabetic. I was diagnosed as Type II diabetic.  Even though I haven’t had a flair of my pancreas in about 7 years, I am still considered to be chronic.

Second Diagnosis

17 years ago, my first husband and I were getting ready for the trip of a lifetime….two weeks in England and Paris.  Finally feeling better from having surgery about a year prior.  But almost exactly two weeks to leaving on the trip, I came down with what I thought was the worse flu ever. After a few days of suffering, I went to the doctor and was told to see my GI specialist immediately and had more test.  But this time, the results were clear.  I didn’t have the flu, I had my first episode of flare up of Ulcerative Colitis.  Which lead to my first experience with Prednisone. I still made it on that vacation and had a wonderful time, but I knew just about where every bathroom in Oxford, England, and Paris, France was.  Not the exact memory I wanted.

Over the years, I have had several episodes of Ulcerative Colitis.  I have made peace with the medications and know that either I suffer the symptoms or take the steroids.  Many times I think I can battle the symptoms and try to give it the best fight I have, but in the long run, steroids win. And if you have ever had a round of Prednisone, you would understand why I  would choose to fight the symptoms on my own.  I still have flare-up, but now know what I should and shouldn’t eat and can handle a flare up without the steroids.

Moving Onward To Other Body Parts

After dealing with chronic Pancreatitis, Ulcerative Colitis, and Diabetes, I figured I could handle just about anything else.  I was wrong.  About 10 years ago, I was pregnant with my second child, my son.  During the first two trimesters, I did really well.  It was when I hit the third.  I start having horrible back pains.  And when I say horrible, it was worse than delivery.  I figured and so did my doctors that it was just the way that the baby was laying.  Figuring that it would go away after giving birth, I tried to do massage therapy, chiropractor, and medications.

After I gave birth to my son the pain in my back continued, getting worse.  Finally, I went to see my doctor and she recommended that I see a spine specialist. I went to see my first spine specialist and he diagnosed me with Degenerative Disc Disease. He said that there was a new procedure that he wanted to try on me and me being naive and new to all this, I agreed.  My first back surgery was an artificial disc replacement to the disc that was degenerative.

As soon as the surgery was over, I knew that there was something wrong.  I kept going back to the surgeon, asking him what was going on and he kept giving me the runaround. After 6 months of this, the surgeon said that there wasn’t anything else he could do for me and dropped me as a patient.

Lost, confused and in a lot of pain, I started the search for a new doctor. I started in the phone book and all the A’s surgeons were either booked or were not taking any new patients.  I got to the letter B and the doctor I called first, said to come in the next day and bring all my X-rays and test.  I remember walking into his office and felt immediately comfortable and safe. I knew that this was the doctor for me.

Dr. Barker started to reviewing my test results and kept looking at me.  Finally, he looked up and asked me “how do you do it?  Get up and walk every day”?  I was a little puzzled so I just said: “by putting my first foot forward”.  After chuckling, Dr. Barker asked me to look at the last CT scan and showed me areas where it looked like there was bone but it was broke.  He said it was my facet joints and the pressure from the artificial disc split them into millions of pieces.  He said that unfortunately, I would need surgery, and quickly.  That was my first surgery with Dr. Barker and since I had DDD, the degeneration of my spine is going quickly, so I have had four surgeries in total with Dr. Barker, totally 5 surgeries on my back.

I will probably need more surgeries in the future as the degeneration is continuing up my spine. But at least now I know that I am in good hands with my surgeon. I have always trusted him and I know that he knows exactly what he is talking about. He has always said that if he can get me to 80% of no pain, then his job is done.  You might ask, why not 100%.  Well, it would be if the back hadn’t had 5 surgeries already and if there wasn’t nerve damage too. I would be happy with being out of pain 80% but it hasn’t been like that in a while.

That is about it.  Nothing glamorous or crazy, so far. M y chronic illnesses and pain are pretty basic and boring but they make me who I am.  As much as I have been through, I still think that I am lucky.  Life could be so much worse. Let me know in the comments below what your chronic illness or pain is.

 

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