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ANOTHER TEST, A FEW SHOTS, SOME SURPRISES AND SOME THINGS EXPECTED.

Several weeks ago I had the EMG/NCV of my legs and I pretty much got the answer I was expecting.  The test showed absolutely nothing.  SURPRISE, SURPRISE…..yeah right!  The thing that I wasn’t expecting was what the Dr. told me next.  He said that even though it’s rare for the test to show a false negative result for nerve damage, it can happen.  I don’t know if you can imagine how that felt.

RELIEF

That’s right, relief.  I found a Dr. who not only believes me, but understands also.

Wow, more than one those do exist!

and to finally hear the words

“I believe you!” 

it’s not something that someone like me who has had the issues I have hears very often and I can’t even express how much I needed that.  

Usually I get a negative reaction or a feeling of there’s nothing they can do for me and I was ready to give up on ever feeling better, but Dr. Wagner changed that for me.  It actually gave me the feeling that I don’t need anyone else to validate the symptoms or even give me a cause for them.  

For that reason I don’t know how much more time I’m going to invest in getting a diagnosis.  I think that knowing that someone believes me is enough and I’d rather just focus on controlling the symptoms.  I don’t have that need to prove anything anymore and that is such a great feeling.

A little over a week ago I had a 4-5 left-sided trigger point SI injections shots in my back.  That was the most painful injection I’ve ever have had.  The Dr. thinks the hip pain I’ve been having has to do with my Sciatic Nerve so I had to suck it up and get it done.   I just wanted to be able to  move without having to worry about randomly screaming my lungs out and scaring anyone who happened to be around me.  Although I still have some of the pain, that goal seems to have been accomplished.  I’m thinking that I may need to have the injection repeated.  I know that it can take a few injections before you get the full affect.  At least that’s have it was with the Caudal injections.

This has really been a busy month.  Just a week ago I  had another EMG/NCS, but this time of my arms/hands.  Dr. Wagner wanted to repeat it since it was back in 2009 when I last had my them tested.  That brings back memories of how this numbness/pain started. It was the morning after Thanksgiving  and I woke up in the middle of the night with the worse hand pain I could ever imagine.  I was out-of-town at the time and  I didn’t want to be a bother to anyone.  I also don’t like emergency rooms.  I decided to just grin & bear it.  From that moment on, little by little, numbness became a part of my everyday life.

Even though the numbness started in my hands I wasn’t having any numbness  in that area the day of the test.  I even thought to myself how funny would it be if that test actually showed something.  What do you know….. it did!  I guess I have mild to moderate Carpal Tunnel in both hands.  Honestly I just think I’m backwards and you know what?

I’m okay with that!

I think that actually makes me kind of special:)

So now I  have to decide whether to have that nerve biopsy or not.  I’m a little scared to have one done because of what I’ve read about it.  From what I understand the nerve is exposed and carefully divided into its many fascicles. Each fascicle is tested electrically during surgery to determine if it carries motor or sensory function, it then is covered with an occlusive dressing which is removed after 3 days, revealing some stickers underneath. These stickers are left in place until you see your surgeon about one week later for a wound check. My biggest concern is there could permanent nerve damage as a result of having this test, but it may be necessary if the numbness I’m having keeps spreading.   This may sound funny and is very annoying, but lately I can be bare footed, but the numbness that has spread from my feet up into my legs makes me feel as though I’m actually wearing boots.  Even when I do have shoes on, it won’t matter how straight my socks are on or if not a speck of dust is in my shoes, it feels like somethings not right such as my socks are scrunched up or rocks are spread throughout the entire shoe.   So you probably can imagine why I only wear shoes on as a need to basis.

I hate to admit it, but I think I need to put my pride aside and start looking for a walker.  Recently I had to use my old one since I couldn’t walk the distance I needed to without something holding me up, but I was embarrassed by how people looked at me with pity.   The thing is I need to start accepting the fact that it is going to get worse. Eventually I’m going to be almost completely hunched over.  I have what is called flatback syndrome due to failed back surgery.  Right now the surgery to repair it only has a  47% success rate and I don’t like it when the odds of ending up worse is greater than the odds of getting better. Not even worth it, doing fine getting worse on my own. Still can’t believe that fixing my scoliosis caused me to have a spine that is now too straight.   The fact is I’m so straight, I’m falling over, lol.  I am looking forward to getting a scooter one day.  I already made plans to race the kids!

Well, that is all for now.  All I can do is take one day at a time and I will and get through each one, just like I always have.

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WHAT I’VE REALIZED

Since November I’ve had constant numbness in the bottom of my right foot. Then a few months ago I noticed numbness in the middle of my left foot going from my toe down to my heel and eventually the entire bottom of my left foot has also become constantly numb. A few weeks ago I finally saw a neurologist and Monday I’m scheduled to have an EMG.

Today as I was thinking about the test I started having a panic attack. Not because I’m afraid of the pain or what the test may show, I can deal with that. What I’m afraid of is once again getting told I have something that can’t either be explained or fixed (i.e. Fibromyalgia, CFS, etc.).

That got me thinking about what I’ve already been through, especially when I was first diagnosed with Fibromyalgia.
Being diagnosed with Fibromyalgia was very hard for me to accept. For one, at that time I had never heard of it and even worse some medical professional labeled it a “made up disease” or called it a “mental” disorder, but

I KNEW MY PAIN WAS REAL……
I KNEW MY PAIN WAS NOT SOMETHING I WAS IMAGINING

So at first I dismissed it and thought “they probably just haven’t figured out the real cause of my pain.” Even as time went by and I would have other symptoms I would be told that it’s part of the fibromyalgia or even worse; being diagnosed with something else like CF(Chronic Fatigue Syndrome), I still didn’t believe it. For one thing:

HOW AM I SUPPOSE TO BELIEVE I HAVE SOMETHING THAT SOME DOCTORS STILL QUESTION?

Then I started researching it more and the more I research it the more I finally understood and even believed that actually was what I had. I was so happy. Not because I had Fibromyalgia and CFS, but that I finally could put a name to what was going on with me. I was on cloud nine, but right as I thought everything would be easy to explain to now, I was hit with a whammy that was even worse.

What could be worse than some doctors as well as myself questioning what I had?

Others questioning it too, especially those who were supposed to be the closest to me. And I know it shouldn’t matter what others thought, but in reality

IT DID….IT REALLY, REALLY DID!
And even to this day, shamefully
IT STILL DOES 😦

Lately, I think I have new and even a better attitude about it, especially since the past year has brought new and more alarming symptoms. I’ve realized that I can’t worry as much about what others think and if they don’t believe me, well…… then they don’t need to be part of my life. Just like the doctors can’t do anything to fix my pain, I also can’t fix another persons stupidity, so if they want to call it a made up disease…. I will speak my mind and it might even hurt my feelings a bit but more than anything…… I will really pity their ignorance.

Most importantly though is what I have learned and what I do know about myself and that is how strong I really am. Living with chronic pain is not easy, but even so I get up and do the most I can when I can. Sometimes I do more in one day than a healthy person does in one week. I can’t choose what days those are, but when I have a good day I do take advantage of that and for that reason

I AM PROUD OF MYSELF!

Anyway, Monday will be here before I know it and I could leave the doctor’s office that day with either some answers or more questions. Either way, I will get through it. I think I’ve proven that.

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