My journey to Diagnosis

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

GRRRRR!

So, the zillion doctor’s appointment have started. I went last Thursday to my pcp (primary care physician) who saw me for a whopping 10 minutes. She told me I gain 24 pounds i n two years, then told me to have blood work done.

Nothing to help with the pain.

Nothing to help with the numbness .

Nothing to help with any of the other symptoms I experience every day.

Not even a referral to the neurologist.

Well I try to make an appointment with a neurologist , they have me an appointment in August . I called a different doctor. I ended up in the ER Thursday night. More blood work And CT scan,  I do not have a connected tissue disease. Yet I still  have the migraine that I have had since Tuesday.

I went for the blood work this morning and of course the lab tech’s were rude. Or maybe it is just me. Last time I checked I was the patient, or customer. Which means I’m the one who is supposed to be taken care of. Right?  I am not a number, or a claim. And if my doctor’s refuse to help me in a timely manner. I will simply get new doctor’s…

I go to the new neurologist in the morning.

<3 Magge

As most of you know from my main blog, I tend to stay pretty busy. On any given day I have at least one homework assignment due, DIY project I would like to accomplish, customer’s alteration to get done, studying for the next Bible Study and making time to go out in service.  Plus, all the day to day task’s that come with being a wife, mother and caregiver to an Alzheimer’s patient.  I feel guilty when I am idle for more than a few days at a time.  I also feel guilty when my home is not clean and I am not doing enough with my family. I am a bit (ok, ok, more than a bit) of a perfectionist. I also must admit that I am a control FREAK, Which is defiantly not one of my best qualities. I like being able to make my family happy by “fixing” whatever is ailing them. Well, I am finding out that there are things, wait for it…I cannot control.

Schizoaffective Disorder,

Alzheimer’s,

Attention Deficit Disorder,

Attention Deficit Hyperactivity Disorder

Bi Polar,

Physical Ailments

And the one that scares me the most.

Multiple Sclerosis

See all the other’s we, as family, are getting through. It is rough at times. I have to train myself every day to change the way I deal with everyday situations because the other person my see things differently than I do. Mr. Wolf has Schizoaffective Disorder, Which means that I cannot come in like a bull in a china shop with him. My daughter has ADD while my son has ADHD.  My mother in law has Alzheimer’s. Those I have learned to cope with. I think of my home as a perfect clinical experience for the psychology degree I am studying for. But MS. Now that is a whole different ball game. Because what happens when the person who takes care of everyone else, now needs to be taken care of?

I do not know the answer to that question. Heck, it is not even known if I actually have MS. Only time and way too many tests will answer that question. This blog is to share not only my stories but stories of other strong women who are suffering from invisible illness, that get up every day, and put everyone else first.  A place to show other’s, that you are not alone. I may have guest bloggers from time to time. My hope is that through my trials and tribulation with both physical illness and mental illness that another women journey may be made easier. Please feel free to leave comments. I want everyone to feel comfortable and at ease.  We are all in this together.  As 1 Timothy 5:2 says “…older women as mothers, to younger women as sisters…”

<3Maggie

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Due to medical issues, I am no longer taking orders. Thank you to all my loyal customers, if something should change in I will let everyone know. <3 <3