As the months turn...

I haven't written in the last few months not because I haven't had anything to say, but because most of the things that I had to say weren't exactly "positive". Well, they were slightly, mostly "positive" that things, my life, would never be the same.

I stopped writing because I didn't want my negativity to rub off on those around me. It was a struggle to keep a semi-positive attitude and honestly, there were (and still are) times that I failed miserably. But here I am, 8.5 months later, living, still alive, surviving and more importantly, thriving.

Life has been full of ups and downs these last few months, but overall it has been the biggest learning experience that I have ever faced...and I'm sure that the lessons aren't anywhere near complete - because my recovery still continues everyday.

I have learned that I can take a hell of a lot! -of pain, frustration, heartache, intense feelings, no communication, lack of support and the list continues. I only had 4 people here to truly support me and offer me help. If it weren't for them, I wouldn't have survived...and I truly mean that. I had them showering me, taking me to doctors, making me meals, talking with me, and serving me. Those are things that make one extremely vulnerable (especially the showering one) but it was something that I just had to endure...I couldn't do it myself, so I had to rely on others to help me do what I, at the time, couldn't.

When I look back I see that I have had to learn that life is too short to take everything so seriously and to heart. Just because people are pissed or don't understand, doesn't mean that it is about me...it's their stuff, not mine. I have my own stuff that I need to take responsibility for and let others take responsibility for theirs and not put their emotional baggage on me.

I have finally (at the tender age of 26.5) figured out what I want in life...and I refuse to be swayed by the opinions of others. It is my life...and they may not understand my reasons or desires to want to attain certain things, but then again, they don't have to. The only ones that I need to please and God, my husband and myself...that's it. That sounds mean, cold-hearted even, but I have learned that I am not going to please everybody with who I am/what I am doing/going to do. I know that my desires have a godly purpose and that they are within me because of Someone bigger than me who has put them there so that I can utilize all of the experiences that I have endured to help those who hurt.

I still attend Physical Therapy...twice a week...it is a struggle everyday still to get up and do the exercises that I have to in order to gain what was lost...I am hopeful that a change will come. That I will be able to walk...to face those who doubted, those who refused to accept reality, and walk through life being a stronger, better individual.

It is when one has to face the mortality of the self that these issues truly arise.

13 weeks

I think that it is appropriate to write something on the 13th week of my recovery. These last 13 weeks have stunk more that I can say (without getting too graphic or offensive). Let's recap!

11/18/10 - Surgery occurred. Had a stroke during surgery.
11/20/10 - Sent home from the hospital for the first time.
11/21/10 - Returned to the hospital after a Physical Therapy Evaluation.
11/23/10 - Released from the hospital for the second time.
11/30/10 - Began Physical and Occupational Therapies at Mountain Valley Regional Rehabilitation Hospital. - Best place to get therapy following a stroke.
12/8/10 - First post-op visit with neurosurgeon.
12/12/10 - The beginning of the world's longest migraine.
12/20/10 - Lost my job due to not being able to return within a "reasonable amount of time".
12/21/10 - Visit to the neurosurgeon which turned into another stay at St. Joe's.
12/23/10 - Released from St. Joe's for the third time.
1/4/11 - Another visit to the neurosurgeon. He almost cries because I'm not "fixed".
1/10/11 - Neurosurgeon refuses to write out another prescription for me to continue therapy.
2/1/11 - Begin seeing Naturopathic doctor to see if they can offer any relief from the migraines. Acupuncture treatments begin.

I know that doesn't bring this exactly up to date, but things have remained fairly stagnant during these last few weeks.


The biggest daily struggle that I am facing is just learning how to handle this "new" phase of life. It is difficult to go from walking to being in a wheelchair and unable to walk. Everyday I am faced with the reality that my leg doesn't work the way that it should, very frustrating. I continue to do therapy at home, with Tim's help. Recovery is slow going, at best, and requires a great deal of effort to try everyday to do something.

Thanks for all of your support during this time.
Heather

We don't realize how much we rely on something until it is taken away.

8 week update

It has now been 8 weeks since Heather's surgery. Things have been pretty stagnant during this time, hence the lack of updates. Below you will find a list of the obstacles that face us daily in this recovery process.

1) Heather is still unable to walk due to her left leg being numb, weak and unable to move on its own. Because of this, she uses a wheelchair to get around the house.
2) She is not allowed to be left alone for long periods as she is still considered a "fall risk".
3) Heather is also faced with the reality of the injury that her brain has sustained. This includes (but is NOT limited to): forgetting what she was doing, inability to concentrate/focus, using the wrong words in sentences and leaving tasks unfinished.
4) Heather has been suffering from a migraine for over 4 weeks now, with no medication working to reduce the pain.

Basically, things have not changed within the last 8 weeks. We are still faced daily with the "tasks of daily living". Heather needs to be supervised during most tasks in order to maintain her safety. This process is a long, arduous task that will not be completed within a few weeks (as we have learned). We will continue to update, so please check back on Heather's progress.

December 9th update

An update regarding where things currently are:

1) We are still in limbo with AHCCCS and have not heard anything from them in either direction.
They required all of the information to be into their office by December 2nd.

2) Heather is continuing with the rehabilitation process by going to physical and occupation therapies 2 times a week. This is to help her re-learn how to put clothes on, move her left hand and leg, speak, aid in memory issues, stand and move, as well as a myriad of other tasks. They do not believe that she will make a full recovery. They believe that Heather will never walk again without assistance from a walker.

3) Heather went to the neurosurgeon's office on December 8th for a post-operative appointment. They are in the process of scheduling another MRI, neurological testing and another surgical consult.

November 29 - Update

Since Heather has been home, not much has changed.
She still cannot feel her left leg or move it by herself.  Her entire left side is weak and numb.  She is in pain and sick to her stomach most of the time.
She starts physical and occupational therapies this week.

Getting things straight

I have been asked a lot of questions regarding my surgery, insurance issues, etc, so I thought that I would put all of the information that I have (as of today) within 1 document.

1) AHCCCS has denied coverage for my surgery based on my husband's and my combined income. (11/9/10)

2) I reapplied for AHCCCS on 11/9/10 and await an interview with them regarding my application.

3) If AHCCCS is "pending", St. Joe's will go ahead with my surgery without any hospital fees up front.

4) If AHCCCS denies me again, I will be responsible for the entire hospital bill, which is
$105, 184. If I can pay in 30 days (from my surgery date) I receive a 30% discount, which leaves me with a bill of $73,648.80.

5) I have been unable to get any form of private insurance (think Blue Cross, Blue Shield, Aetna, etc) due to the Chiari Malformation and other conditions from which I suffer from.

6) Amazing Grace Church is handling the funds because my own local congregation did not want to help. A friend of mine is good friends with the pastor at Amazing Grace and they graciously offered to help with the 501(c)3. The funds are not being sent directly to the church, because it is located in downtown Phoenix and the mailbox is not as secure. Because of this, any funds are being sent directly to the pastor's personal address.

I hope that this brings some clarity to my situation.

25 years

I was doing some searching today about others who suffer from Chiari Malformation and how long it took for others to receive a diagnosis. I hate to admit this, but I happen to rank near the top of the amount of time taken for a diagnosis to be made. In fact, I have had symptoms since I was born, over 25 years ago.

25 years is a long time to suffer from something.
25 years is a long time to battle.
25 years is a long time to have unexplained symptoms.
25 years is a long time to be sick.

I have spent the last 25 years of my life being ill. There haven't been many days in which I have been well. I want to be alive and see the next 25 years of my life. I want to experience health in the next 25 years of my life. And the only possibility for that to occur, is by having this surgery.

Thanks for helping me do that.

Another day...dealing with St. Joe's.

Well, today has been quite busy! My husband, Tim, and I were busy making phones calls, writing emails and visiting places to live. We have traversed all over both Prescott and Prescott Valley to handle all of these things.

A friend of ours contacted St. Joe's in Phoenix on my behalf today. Keep reading to see what they REALLY think.

St. Joe's doesn't believe that the money will be raised for my surgery.

St. Joe's stated that if I were to suffer from another stroke, that they would NOT expedite my surgery. In fact, all they would do is "revive me to an alert state".

St. Joe's told our friend that they help those who are trauma patients.

When asked if they would help me if I suffer from another stroke, they stated "not necessarily" because a stroke is not considered a trauma.

St. Joe's also believes that my surgery is ELECTIVE. My Neurosurgeon states quite the opposite. He says that it is "MEDICALLY NECESSARY FOR MY SURVIVAL". But the hospital sees it as something that I just want to do.

What have I learned from this experience today?
That the hospital billing department is in charge of the hospital.

Help me show the billing department that they are NOT right and that the money WILL be raised!
Thanks for all of your support!!!

Welcome Video

This is a video, introducing myself and the surgery that I will be having. This is a real video of me, in my home, with my dog. I wanted to bring this whole issue to life, make it more personal. So, please feel free to share this with others in whatever medium you choose.

Thanks for watching.