Wednesday, October 30, 2019

Life So Far



                 Its been a long time. All I can say is that I have lost a bit of my pull to write. I have not felt well in a long time. I went to the doctor several times and they would find nothing.

Oh, believe me I was grateful that there was "nothing" to worry about, but still I suffered symptoms. Doctor said had it was all a part of growing older.

"Maybe if you lost a little weight"
 Image result for chubby woman cartoon 
the doctor said after she stated my pain was a bit of arthritis,  And that should have been true. I am a bit overweight. Two years ago I spent the summer in pain from a swollen knee. There was no accident that preceded it; no known knock or even a ping. One day I woke up with a swollen knee and it was so painful. The pain lasted all summer. Then it was fine again.                                      

I would complain of fatigue over and over again and I sometimes would just try to power through only to be overtaken by incredible tiredness just a short time later. My husband would find it hard to understand how I could be fine one minute and bone tired the next.

Earlier this year I experienced a headache that lasted a week.

It was unlike any headache I have ever had before.

It was like an electrical shock every few seconds and it hit the exact same spot in the back of my head;  over and over again...24 hours a day for  a week.


I have gone countless times to the doctor and have had countless tests.

I went again.

This time my doctor sent me to a neurologist. It was hard getting an appointment so i made the appointment with the first available doctor.

I'll call him Dr Ouch Mcquackers
                                          Image result for quack doctor
                                                                 source


Because he caused me more pain than I came in with.

He ordered all the necessary tests.

MRI

Brain Scan

EMG... a very uncomfortable ( OK it freakin' hurts) test on nerves. The sensation was very much like the sensation you get when you hit your funny bone...over and over again. They start off with a soft shock and increase it in the same spot. Then they move on to another nerve.....you get the picture. Your arm moves uncontrollably and my only regret was that it didn't jump up and slap that instrument right out of the Tech's hand.

I also had a sonogram of the arteries in my neck

And finally... more specific blood tests.

I went back to the doctor after they received all the results.

Everything came back normal.

Now that news should have made me happy. I am a cancer survivor and every time I go to the doctor for any type of tests that little cancer voice always says " I could come back you know".

But there was nothing

So I ask the doctor..." Well, why then do I have all these symptoms?"

He answered " I think its a pinched nerve in your neck"

"But I have full range in my neck. How could I have a pinched nerve if my neck does what its supposed to do"

Now this part I don't understand and if it wasn't for my Husband sitting right there I would have thought I imagined the whole thing.

After I said that I had full range and currently no pain in my neck...The doctor simply got up and walked over to me, pressed the sides of my head full force and asked " Does that hurt?"
I cried out in pain and my husband jumped up in a protective reflex instinct. " What are you doing!"

Dr Ouch prescribed some pain killers and suggested I come back for acupuncture.

Don't hold your breath Dr Ouchie.

Yada Yada Yada

I got the records of my tests and never went back.

A week later, Dr Ouch's nurse called me and said that part of my blood test had taken longer that the other parts of the blood tests and it turns out I had LYME Disease.

LYME? but how? I don't remember getting bit by a tick. I immediately got on meds and then made an appointment with a specialist.

I'll call him...Dr Oldie but Goodie.

He was kind and understanding and actually listened to all of my complaints. He ordered more tests to make sure the last one was not a false positive.

A week later I went in for the results.

He said that indeed I had contracted Lyme's disease ....sometime in my life.

Wha?

He said that he couldn't tell if I had contracted it in the last few years or decades ago.

decades....

Dr Oldie but Goodie said that somehow my body beat it, but apparently recently something happened  because my immune system probably didn't go back to a resting state. In a sense it still thinks its fighting something and is sort of attacking itself.

I will test positive for Lyme for the rest of my life, and now because of it (or some other thing my body is responding to) I have fibromyalgia.

I found out that Fibromyalgia is not only pain but it comes with other symptoms like fatigue and stomach issues. Its affecting my eyesight and I have had occular migraines which are very scary because they start with me feeling like I'm looking through broken glass or a kaliedascope. Very very strange.

There is also another symptom...I forget.
There have been times when I look at a person I have known for years and cant remember their name.  The morning of my appointment with Dr Ouchie, as I filled out forms , I forgot how to write my address. For at least 20 seconds or more I could not figure out how to write it. I think that is the scariest symptom of all. It doesn't happen often, but when it does It unnerves me and saddens me so much.

Dr Ouchie found no evidence in my brain for Alzheimer's

Still, I'm trying to get used to all this and realized OK, This is new and frustrating and painful, but somehow I still have to get things done. So it takes me longer.

I also have realized that not everyone is going to understand how one minute I can be fine and the next be dead tired or in pain. Some days the pain is relentless, but I tell no one. I don't want to be that person who complains about her ailments every single minute of the day.

Lastly, I am trying to make plans and trying new things. I have to.

 i have to have something to look forward to.

I went climbing/zip lining with my family... I of course was on the baby course frantically trying NOT to fall from a height that I could probably easily jump from. While my kids were high in the trees in the expert courses, The hubster stayed with me.

I recently went back to my doctor for my yearly physical. She said " Hmmm, sometimes depression sets in as pain. I can prescribe an anti depressant. I told her "I'm not in pain because I'm sad, I'm sad because I'm in pain"

It does get to me that even though I have two expert doctors that say yes, there is something wrong here, but we don't exactly know what it is; my primary Doc, (who I like by the way) believes essentially that its all in my head. That is the most frustrating part of this all....trying to convince them...I'm in pain and the pain is real.

I have to make more appointments, see more doctors and explain all over again.

I'm so tired of all that.

But what else can I do?

I have started making plans and setting more goals for myself. I feel accomplished when the smallest errand gets done 'til completion. I feel antsy and do not want to wait for adventures...I want them now. I feel like I'm in a race, but who am I racing against?...I do not know.

All in all, I am moving,

                      I am breathing,

                            My family is healthy

                                 There is food on the table and we have a roof over our heads.


Life so far....I'm here.  
















9 comments:

  1. How can your own doctor think it is all in your head when you have been diagnosed with Lyme disease? Lyme can turn up many years later, and do awful things. What have they done for it? I have several relatives with Lyme, and it fits all of your symptoms. I have fibromyalgia, and have also had all these tests and more. I am so sorry! There are lots of books about dealing with fibromyalgia.

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  2. P.S. SO glad to see you back, even of it is a sad post!

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  3. Hi Ginny, Thank you. I hesitated writing it, but I'm glad I did. Thank you for always being such a great support on my little blog.
    Blessings, Joanne

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  4. I can't believe what I am reading. I am so sorry to hear all that you are going through. I do not believe it is all in your head. I will definitely be praying for you and hopefully there will be something to help make you feel well again. ((HUGS))

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  5. I am so glad to hear from you! You have been through the wringer with tests....sorry for the Lyme disease. My sister has Fibro so all that in your head stuff reminds me of her. Did they check you for MS? I think you have your plate full.
    Keep writing you do so well with it

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    1. Hi Kim! They did check for MS. I'm going to see another Neurologist and I guess more tests will be given. Thank you for your sweet words
      Blessings, Joanne

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  6. I am so sorry that you are having to go through this! I have heard that Lyme disease is very p
    hugs,
    Jannainful. I totally understand about getting tired. Every day I have a time that I can't keep my eyes open and I don't even feel tired. I will keep you in my prayers. Hang in there girl!!

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    1. Hi Jann, Thank you so much It means a lot to me!
      Blessings, Joanne

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