Thursday, September 11, 2014

Ok So I know you all have been waiting.... Here is the complete update of my saga!

Tuesday 9/9 (AM)

7 years ago I was diagnosed with Chiari Malformation Type 1 (CM1). The good news is right now the herniation is stable but I still have symptoms. But 6 weeks ago I was diagnosed with Idiopathic Intracranial Hypertension (IIH). This is causing my optic nerves to swell and causing me to go blind. I FINALLY had an appointment with the neuro-opthamalogist to figure out our plan since I have both CM1 and IIH. Also this week just happens to be Invisible Illness Awareness Week, and Sept is Chiari Malformation Awareness fitting right....

I am attaching links to some important website regarding my diseases and would love for you to become more informed!

Tuesday 9/9 (PM)

The dr did the same tests as the previous opthamalagist. He said that the blindness wasn't too bad and he changed my rx to a slow release Diamox and the dosage went from 1000mg to 2000 mg. He was really surprised my optic nerves were as swollen as they were with the rx dosage I was taking. He wants me to go ahead and see the neurosurgeon to see what he thinks and see if it is my Chiari causing this. Plus I haven't seen a neurosurgeon in 7 yrs. After I see that dr I go back to this dr for another field test (checks for blind spots) and sees what the neurosurgeon recommends. So really I am back to square one which is waiting with no real answer. Blah!

And such is the vicious circle of our disease!

Wednesday, June 25, 2014

Updates after Friday and something to think about!

I know I said I would update after the neurologist but here is the abbreviated version. I am now getting another MRI Friday as well as going to the ophthalmologist on Friday. The true update will be after we see what those results show. More meds or headed to neurosurgeon....

But I saw this awesome post online today and I really wanted to share!!! ENJOY!!!!

5 Ways You're Not 'Living' With Chronic Illness
Posted: 06/24/2014 7:59 am

A fine line, ladies and gentleman, its what stands between living with chronic illness and being alive with chronic illness. I've straddled it a few times, but I've figured out some of what on the other side and here's what I know:

1. You're not living with a chronic illness if you're hunting for the why full time.

Is it because of a parasite? A bacteria? A cancer? Is it because you wore that blue dress last Tuesday? Is it because you stuck gum in someone else's hair that one time in second grade? There are an infinite list of possibilities as to why you could be sick. But after a while, and at least for a while, you've got to take a break from the endless hunt for answers and ask yourself, "How am I going to handle living with my disease today?"

There has to be breaks, balance, within the search for answers. You can't just live going from doctor to doctor. You have to even out the space in between with friends and work and family.

Because you can't hunt, you can't search, you can't question, and you can't get an answer for any of the whys in life until you've mastered feeding yourself, moving yourself, balancing your work, relationships and symptoms at the same time. I mean, you can throw all of those things out the window and just hunt while you lay in bed dying.

But we don't call that living.

2. You are not living with chronic illness if you're not working.

Don't panic. I'm not living under a rock, I know lots of people with chronic illness can't work conventional jobs. So I don't mean working in the 9-to-5 sense. I mean working in the "I have a goal" sense. Like my goal is to get enough documentation to get disability. Or my goal is to raise my kids as best I can despite my symptoms. Or my goal is to focus on my physical therapy so I can become more mobile each day. Or my goal is to find ways to work from home. Working is purpose. Do you have it?

3. You're not living with chronic illness if you're hating yourself.

Sure, it's super easy to slap a "defect" sticker on your chest and go cry in the corner. Hating yourself is about as natural as all the other symptoms of chronic illness -- weight gain, constant pain, fatigue -- but this is (maybe) one of the only symptoms you can wake up and shake off every day. Go to therapy. Learn to cope a little more every day. Making peace with your disease is something you have to do because...

4. You're not living with chronic illness if you're fighting it.

Can we clarify something here for the general population? Fibromyalgia is not part of the WWF. Chronic illness is not cancer. You don't "fight" it. You don't "beat" it. You don't make a voodoo doll out of it and start stabbing it with acupuncture needles. In the same way we don't use the word "cure" to mean "treat" we can't use the word "fight" to mean "deal with."

Chronic Illness is:

Coped with





Lived with



Managing chronic illness means developing strategies to assist you in moving forward with your life's greater focus with as minimal suffering as possible. Don't head-butt your disease, outsmart it.

5. You're not living with chronic illness if you are not moving.

We all linger in stagnation for a while. We get stuck in the mud. Blindsided by an unexpected diagnosis. We let the moment we need to absorb, absorb us. Life with chronic illness is just like any other -- a life full of obstacles. With pain, illness, exhaustion -- it's easy to sit down for a while and rest your body. It's easy to lay down and not get back up. But if you're not moving, you're not living. So even when the obstacles become too great, the treatment stops working, the doctors stop telling you the good news, even when you lose support, you lose sight of what you're moving towards -- you keep moving.

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Monday, June 23, 2014

Good things have to come to end....

Well it has only been 3 months and I am headed back to the neurologist! UGH! I am pretty nervous too. As I said in my last post he said to give him a call if something came up and it did... In a big way! I went to the eye dr on Friday, June 21 and as he was doing his normal tests he says both my optic nerves were swollen and he was concerned! He actually wanted me to come back for some different vision tests later. He already knew I had Chiari... I told him that I would call the Neurologist as well on Monday to see what he suggested. Well as soon as I called, his nurse made me an appt for tomorrow. That is how serious she thought is was... I know the next step, go see the neurosurgeon... I am pretty sure the inevitable has happened. I will update after the appt tomorrow.

Wednesday, March 19, 2014

Visit with Neurologist

Hello friends... It has been a while... In this crazy disease that is a good thing! I saw the Neurologist today and he said I am doing well. He wants to see me in a year unless I feel I need to see him sooner. He did bring up that next time he wants me to have another MRI, he wants to make it a yearly thing. I guess because my symptoms are becoming more frequent. Not headaches they are totally under control, which is great! But numbness, tingling, drop attacks, etc! He also diagnosed me with Raynaud's phenaomenon. And when I get a chance I will post the pic from my phone of my finger when it is actually happening. Such a pain (literally!) He did say that if my next MRI has me herniation at 12+mm he will be sending me to the Neurosurgeon... UGH! I guess because my symptoms are progressing... I am at at a 10 now. 7 years ago I started at at a 6-7. So that is where I am now!