Frustration and Hope

GRRRRRRRRR!

Ok, Now that is out of the way, actually I still want to scream and cry. However, It is late and my babies are sleeping. They do not need to see mommy cry, at least not any more today. It has been awhile since the last time I blogged anything. Honestly, Not only have I not had the time, but I also am in short demand with energy.

Since my last post I have had to change neurologist, again. The second one stated that ” you have multiple symptoms, but none of them are neurological in origin.” She gave me a prescription for Depakote and told me to come back in 6 months. I sat in the exam room begging for help. And she did nothing but throw pills at me.

No MRI,

No VEP,

No Lumbar puncture.

Nothing.

Needless to say, I left the office in tears and called Mr. Wolf.  Who, had another appointment for me with another neurologist before I even made it home. Since that visit, I have gone to a ophthalmologist, where I have found out that I have blind spots in my vision and that I passed my VEP. VEP stands for “Visual Evoked Potential”

(Image courtesy of Dr K Ng)

(Image courtesy of Dr K Ng)

 The test basically test to make sure that the information that I am seeing is making it to the part of my brain it is suppose to. (I didn’t want to go to medical terminology on anyone =) I have come to find out that a normal VEP doesn’t mean anything. It just means that RIGHT NOW, my optic nerve is working like it should. -That is a matter of debate at the moment, because I so don’t think my vision is right lol.

I have had a MRI and now waiting on a expert to look it over. If that comes back good, then we move on to the spine. It is a long process. To long. However, at least my new neurologist is trying to figure it out. He has prescribed me Lyrica to help with the neuropathic pain. It is helping a little bit. I also found out today that I will be having a laparoscopy for possible endometriosis and a polyp inside my uterus. Yea, it has been a peachy month and a half.

Here is what has been great. My husband. My kids. My mother in law (who in all honestly is like the greatest ever. Period.) My wonderful friends. My spiritual family, and my doctors. I have cried, screamed, thrown tantrums like a 3 year old child and they have been there for me through it all. Ever single one of them patiently waiting until I am done to tell me they love me, no matter what.

While my neurologist can not give me all the answers I want, like now (the little patience I had has flown the coop =< ) He is willing and trying to find what is going on with me. He knows I am scared, frustrated, sad and plan out angry at what ever it is that is going on with me. He also respects me enough as an intelligent women who knows her body to not rule out what I am saying about Multiple Sclerosis simply because one test came back good. He’s a great doctor. ( Dr. G, sorry for flipping out last time you saw me, lol)

So while my health may have taken an unexpected turn. And is causing me to be, well less like me. I will not allow it to define who I am. I realize just how blessed I am. Some days are better then others. I am not taking in as many customer orders.  And sometimes I have to decide if a task, project, chore or yes, even a person is worth a spoon (The Spoon Theory). There are days when I am angry and in the poor pitty me moods. There are also days when I do not even want to get out of bed.  HOWEVER, I do not ever shut my self away and give up. Nor am I am to good to ask for help.

I started this particular blog to share my journey of getting to the bottom of what is going on with me. Right now, understandably it is what is consuming not only much of my time, but also my family’s. Some of what I blog about may be very personal in nature. I will not use real names, to protect those in my post. Yet even though I am blogging about me, my deepest hope is that somebody will read my experiences and have hope that it is all going to be ok. And they are not alone. (That is the psychologist in me lol). This disease, like many of the quilts I have seen is bits and pieces from all over the place. But like that quilt, I am determined to stitch my life, body, and soul back together to warm us all. <3

<3 Maggie <3

2 comments on “Frustration and Hope”

  1. Nicole Reichrath Reply

    Very well written and totally relatable for anyone dealing with a chronic pain or condition. Absolutely right Maggie some days will be better than others but the journey in the end is so worth it. I don’t like having sticklers syndrome but I’ve learned to thrive with it and I’m proud of that. I hope you get the answers you deserve and the best treatment! You have a beautiful heart and soul and I feel you will conquer this illness! An inspirational song that’s helped me when I’m down is Katy Perry’s eye of the tiger. You’re an inspiration with your positive attitude and faith. Keep your head up momma <3

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