Diagnosed, now what?


“We do not need magic to transform our world.  We carry all the power we need inside ourselves already.  We have the power to imagine better.” J.K. Rowling



When  I was first diagnosed with Degenerative Disc Disease, I was confused, upset, and lost as of what to do next.  There are many things that rush through your head and sorting through it all takes time.  There are a few things that I wish I would have known when I was first diagnosed.  But knowing it all know, I know can understand better the way I acted and the feelings I had.

Dealing With Emotions

I wish I would have known that there would be a roller coaster of emotions at first.  My emotions were all over the place, one minute being happy and ok, and the  next I was angry and sad.  I would take things out on the ones that knew what was going one, and I wouldn’t allow myself to go through all the steps of grieving.  It took me awhile to come to terms with what was happening, but once I actually gave into my emotions, I began to deal with things better.

I would ask the question all the time “why me”.  I would ask it to whoever was listening, to God, and to the Universe.  I wanted to find that one person or thing that I could blame, thus feeling better about my predicament.  If I could only take the anger out on one person, and they were the cause of my problems, then I wouldn’t have such a hard time dealing with it.  Little did I know at that time, there wasn’t anyone that I could blame.  There wasn’t a particular reason for me to have DDD, just bad luck. I’m less angry about it all now but there is still times that I still get mad and want to blame something or someone.  Just know that this is normal and allow yourself to go through those feelings.

Then What?

Once I had dealt with the emotions, next step is getting all the information I could possibly get on the illness.  I had heard that the patient that was well informed, had a better outcome.  So I hit the internet.  I bought multiple books on DDD, and I made as many doctor appointments as I could possibly make.  I wanted to talk about the illness and learn everything there was.  I wanted to know that there was a cure for it and if not, drug companies must be close to finding one.

I had notebooks of notes, copies of all my records, and wrote out any and all information that I thought would help doctors to “fix”me. I figured the more that I would take with me to my doctor appointments, the faster they would be able to come up with what was causing the DDD and fix it. Don’t get me wrong, it is very helpful having all that information for the doctors but there wouldn’t be a cure, just ways to make my life a little better. The biggest piece of information that I learned from all this was being prepared for every appointment was very helpful.  I was able to show the doctors when and where the test was done, so they weren’t duplicated. Most my doctors thought it was very helpful to have the notebooks full of records and test results to read immediately instead of waiting for them to be faxed over.  The more you are prepared, the easier it is for the doctor.  Remember that before the next appointment you have.

Telling Others

After I went through all my emotions and learned all the information I could, I had to tell people what was going on with me. The easiest way I found to tell others was face to face.  That way they could see for themselves that I was dealing ok and I was still me.  Remember how it felt when you first learned the information, this is how people who love you, are going to feel too.  Maybe not to that full extent, but close.  Let them grieve and be upset.

The hardest part for me was actually speaking the words out loud “I have Degenerative Disc Disease”. It was almost like reliving the day over when I was first diagnosed.  So when I started to tell people, I would become emotional and upset.  It was part of my grieving to be able to do that.

I believe the hardest part was telling my kids, as they grow older, exactly what is going on with mom’s back.  I’ve always been a very honest mom with them and never hid anything but telling them that I have an illness that won’t go away, has been hard.  I will always be honest with them, no matter how hard it is for me to tell them.  They deserve to know what is going on and they deserve to know why sometimes mom can’t be as active as other days.  I would rather my kids understand what is happening  then them questioning it and be too afraid to ask questions. Choosing words carefully and taking a deep breath is what got me through telling them about my illness.

Get Support

After you have dealt with the emotions and told the ones that need to know, the next step is getting yourself the support you need. I  wish I was able to have found a support group in my area.  Luckily, I was in therapy at the time and I don’t think that I would have been able to get through any of this without the support that I had. Having that third party person to talk to about any and every emotion that I was having, was a God sent for me.  I don’t think I would be where I am today without the years of therapy.  Sara was able to help me understand that, 1. I didn’t do anything wrong, 2. don’t deserve this, and 3. am a good person.

Finding that right support system is so important once you receive that diagnosis.  Not only can they help you deal  with your emotions, but help you tell others, and help with any depression and anxiety that you might be feeling. Don’t be afraid to seek help with someone else.  There is nothing embarrassing or shameful needing to speak with someone.

Preparing for the long Haul

After the first ew weeks are over with, your adrenaline may drop.  The casseroles may slow.  But have a plan for yourself. Have a lot of people supporting you. Know that it may not be pretty.  But remember, you can do this.

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