Small victories

I woke up at 0500, well rested! Yay! I also do not feel completely awful. It is not like I feel like jumping out of bed and running a marathon but I don't feel like hammered dog poop either. Hey, I have to take the small victories every place I can get them!

Tuesday I finally broke down and called the doctors office. Okay, being a nurse, the last thing I want to do is pester the healthcare providers and their staff. I know first hand how annoying that can be. But, I also know how awful I was feeling. So Tuesday I called and talked to the medical assistant for the neurologist. I told her "Look, I do not want to bother you or be a whiner but you need to know that I am in pain. I am talking 10 out of 10 pain and still having migraines". I went on to explain the episodes I have been having. I also explained my illness and made sure she knew that I was just there and that the dr was aware of my illness. I also made sure that she knew how serious I was. I asked her to discuss it with the dr and that if she did not feel comfortable doing so, that I would be happy to discuss it with him myself. These poor girls are about 19 years old. They are medical assistance fresh out of school and scared to death. So they are probably scared of me and scared to grow some (sorry) balls to stand up to the dr. So, two days later, I get a call back from a more mature medical assistant saying "I see a note here, have you received a call back?" So I went through the whole discussion. This time, I used her name (a trick to get people to help you). She remembered me from the office visit. My goodness the neurologist office is in Sun City. How could she forget a 32 year old with a walker that stuttered? Pretty unforgettable at this point. Within 30 minutes, the dr himself had left a message on my phone. Darn it, I did not hear it ring. So I called right back. The same, more mature, medical assistant got the dr right on the phone immediately. Can you believe it? What a turn around! He talked to me for over 10 minutes. I now have another prescription for migraine relief once they come on. Wow--now that is a BIG VICTORY! Thank god, I finally got through to that doctor. I was at the end of my rope and maybe he knew that.

Seven more days until we fly to New York. Eight days until Testing. Nine days until we have some answers and possibly have surgery scheduled.......the countdown begins!!!!

Another "episode"

My new definition of "hell on earth" is driving down our ranch road. I did get a soft cervical collar and it helps but the bumps and the two mile dirt road is awful! I wish we had a hovercraft. That would be awesome. Someone should hurry up and make one that is affordable, please! Then I could get to our little peace of heaven on earth without going through hell first. I absolutely love the ranch. It is our "home". The rain of late has really kept the dust down and filled all the water tanks. The rain was heaven sent. Soon, there will be lots of feed for the cattle. Since I have not been there much, I missed seeing all the baby cows and the beautiful sunsets. I also missed my nice bed down there. It is much more comfy then the one in town. For some reason, I sleep better there too. Maybe it is the bright stars and the fresh air. Maybe--it's just being home...

I had another "episode" Saturday night. It has been a while but I did too much. This time I was not able to get away from the kids. Usually I can get to my bedroom and close the door but this time we were in the car. I felt it coming on. First it started by a sharp pain in my right eye then I started losing my vision. I knew it was going to be a whopper. The sharp pain began from the back of my head and through the eye. It was like a knife stabbing through my head. My speech gets so bad that Justin can't understand what I am saying. The tremors look like a grand mal seizure. Silence in the car. Not sure what the kids were thinking. FEAR probably. Justin said, "do you want me to keep driving to the emergency room?". I could get "NO!" out. I do know that I do not want to go to the hospital to be treated like a druggie. Last time I went there they told me that "what I had" would not cause "the problems I have" and was treated horrendously. I would rather be nursed at home by my kids and family. I do not want to add insult to injury and then get billed for it! This particular "episode" lasted approximately 45 minutes and would scare the hell out of an adult so I am sure it scared my kids. On one hand though, I think it is good for them to see how sick I really am. It is easy to see that I try to laugh everything off and think I may just want to stay home. I don't. I want to go back to work, now, next week, next month, as soon as I can. I worked hard to go to school to be a nurse and I went to school to help people. By golly, that is what I am going to do. As soon as I am better, I am going to help people. I am not sure in what setting, but I have a new empathy for patients. God has put me through this for a reason. I can not let that go to waste. I hope my kids get a lesson out of this as well. I hope they gain a strength through me. I hope that they see how I deal with what I have been given and how I deal with life's issues. Even if one of them learns something, then I feel successful!

Don't forget that I am selling raffle tickets for an X-box 360 Arcade with 6 games. Tickets are $5 each or 7 for $20. We can do this by mail or if you are a VA employee, you can see Stephane in the ICU and Alice in Primary Care. They both have tickets. Thanks for your support!

We are also in the works for a benefit dinner on August 28th with live music and silent auction in Prescott at the Wyndham. I will keep you updated.

Another angel in my life

Karra, Kyler, Lexi, Jake, Weston in April 2010

I usually have Justin, my mom, or one of my sisters around to help me. Thank goodness. The first time I realized how much help I needed help was when I got a form from Social Security. I attempted to read it. Normally, it would be no problem. I would whip through it, sign it, and send it back in the mail. Heck, I sign hundreds of legal and medical documents, a week, at work. However, about a month ago, I got the form from social security and tried to read it. I got about a third of the way through it and realized that the words were not making sense. I could read the words but when they got into my brain, I had not idea what they meant. So my sister Kristi read it for me explained it to me. I signed it and sent it back.

Today, my friend Elizabeth took me to Costco but first she took me to the doctor's office to pick up some paperwork. This was the second time that I realized my reading comprehension difficulty. The lady behind the desk asked me to fill out the medical release form. I filled out the top. That was simple----name, address, phone, etc. Then she said "You need to fill out the whole thing." I immediately felt my heart start to pound and my eyes start to tear. I looked down and tried to read the paper. I tried three times quickly before I asked Elizabeth to help. She had no problem helping but it is my pride. I am young and intelligent but this illness has robbed me of simple tasks such as reading simple medical forms. She quickly hopped up and helped just as one of my family members would have without missing a beat. Thank goodness I am surrounded by good people!

Then we did the big-time shopping at Costco. By the time we left, Elizabeth could hardly see over the cart. We are loaded up on lunch meat, toilet paper, and cheese. My caring coworkers had been feeding us for months so I had not had to stock up for a while.

Elizabeth and I had such a good time. She is lovely and heaven sent! Next time maybe we can fit a lunch in?

Little things bring comfort

Real quick....

I just picked my laundry up to put in the laundry basket and a little metal heart fell out of my jeans that say on one side "with god"...and on the other side..."all things are possible". I had forgotten that yesterday at 4:30 in the morning I had slipped into my pocket knowing that I was going to the neurologist. I was hoping that it would give me strength to get through the appointment. For those of you that have been following me know that I have not had much luck going to doctors. So, I slipped it into my pocket and thought to myself, "God, please help me get through to this doctor today." Last Saturday someone had placed the little metal heart into my donation bucket. So, thank you to the person that put it in there. IT HELPED! I got through to the doctor yesterday! I will take it with me to New York too.

Thanks for the little things that bring comfort!

Long day in the Valley

<---(Kyler and I at the dunes 2-2010. We look so much alike.)

Yesterday started Kyler, Justin, and I started our day at 0430. We were off...The day started with an appointment for an EEG. It checks for seizure activity. We don't know the results yet. Next Justin and I went in to see the neurologist. (Kyler was sleeping in the car--it was not hot in Phoenix yet. And yes, we rolled down the windows people. He did not die. It was his choice to stay in the car. I did not forget him in there. Hee hee) What a turn around! Well first off, let me tell you. I put, what I thought was most important, on the top of my chart. I had the medical assistant copy the MRI showing "low-lying" tonsils, the speech therapist report showing that my speech problem is of a "cerebellar origin", and my emails showing I have the preop evaluation appointment with The Chiari Institute in New York. So, again, that was all up front and center for the doctor. When he walked in, he could see the walker. He could see me moving A.K.A cerebellar ataxia. And, he could here my speech problems. Mind you, this is all the symptoms that I had on May 28th when I saw him the first time. However, he was so kind. He took more time with me and gave me recommendations to see someone at Mayo in conjunction with New York. What a turn around. So, I came to the conclusion that doctors are so sick of getting patients that are drug seekers that they have to "weed" out the sick from the seekers. Unfortunately, I had to "prove" my level of illness but he did come around. At least he did. My poor sister has gone to several doctors that never did come around and have treated her as a "drug seeker" for 20 years and she just got relief in the last year. I feel so bad that people have to suffer in silence. I am telling you....I am not going through this for NO REASON. Something will come out of this. I am going to become the best patient advocate and may start a website and write a book to help others. I have so many plans for when I feel better!

So the neurologist gave me fioricet. I had requested fioricet with codeine so that it would help my head and other muscle and body aches. He did not want to give me the codeine. So, I just got the fioricet. However, that is a big score. It relieves my headaches. Now, your body only has so many pain receptors. Picture this, if your head is hurting the worst, your mind can only focus on that. When the medicine takes care of that, you realize what else hurts. So, yesterday my head felt wonderful but now my neck and back are killing me. Next appointment, tackling the codeine issue! One step at a time! Or one victory at a time....

After the neurologist, Kyler, Justin and I had a wonderful breakfast at Village Inn. Yummo! Then we went to buy Ky some school cloths. We bought him some shirts but did you know that they are making boy pants that have bling on them? Gross, they look like girl pants. They were skinny jeans and were way to girly. He would not even look at them. So he got two Hurley shirts and no pants. I guess he will just have to go to a western store to get "man" pants without bling. It was so funny watching Justin and Kyler's face. They thought we were in the woman's section when we were in the men's pants. FUNNY.

Then over to see Wessy. Weston has been staying in the Valley most of the summer. Kyler and wessy had to say goodbye. They are not close at all but they do love each other. They hung out for a few minutes, hugged, and we were off. Next stop, my old work. State Farm Insurance. Those girls are like family. After all, I worked in that office for seven years. Some of the girls came to the fundraiser last Saturday but others were not able to make it. It was nice to see them. My head was hurting! So, not a long visit.

Wow, I was already exhausted and it was only 11:30. We were off to the airport. Parked, walked, checked in.....headache, bodyache......sad...My sister Dondi met us at the airport. She was going to go through security and sit with Ky until his plan left. I had another dr appointment back in Peoria at 2:45 and his flight did not leave until 4:00. They had 2 full hours of one-on-one time. That is rare in our huge family. I hugged Ky at the security line. Dondi and Ky had a bet on whether I cried before or after the elevator. I probaly would have cried but my head hurt too bad and crying increases the pressure in your head. So, when Ky sent me a text that he was on he plane, the tears began and would not stop. I cried until we were halfway home to Prescott. This kid took care of me all summer. When I was really sick, he would get up and make me an egg every morning and make me eat it even if I did not want it. He also checked on me to make sure I was okay, layed with me, and so on. He has grown up so much this summer. Now, I love his stepmother and father. They are awesome. He is going to do awesome there. So, that makes it easier. And, I get to be the cool, fun mom now. I don't have to fight him to play his instrument and to do homework. What a relief! But, I am going to miss him! He will be back on Christmas break. Can't wait.

Long day ahead tomorrow

Kyler and Weston several years ago ---->

Today is a busy day of getting all my paperwork ready for Dr appointments tomorrow and Kyler packed. Kyler flies to Arkansas tomorrow to live with his dad. We have to leave at 0500. My first appointment is in Sun City at 0700 for an EEG. That is to check for seizure activity. Then my next appointment is with the neurologist. Yay, always my favorite----NOT! I am taking proof that I am accepted for preop evaluation at the Chiari Institute. I am also going to let him know that my primary care provider has referred me to him for pain management and that I CAN NOT LIVE LIKE THIS! It is in his hands to help me manage my pain and it is REAL, not anxiety. So wish me luck.

Then we drive from Sun City to the airport downtown Phoenix to drop off Kyler. My sisters Dondi and Traci are going to sit with Kyler and get him on the plane. He actually takes off at 4:00pm but we need to drive back to the Northwest Valley for my endocrinology appointment at 2:45pm. Fun times.

We went through all of Kyler's cloths and they mostly fit into one big suitcase. Good thing. We may buy him some school cloths tomorrow between the first Dr appointment and the airport. We just have to see how much time we have. So tomorrow comes with hope of physical pain relief but some emotional pain of Kyler moving. Please keep me in your thoughts so that I can get through my day tomorrow!

***Thanks to the multiple people that have put donations in our account at the credit union!!!!

Fantastic fundraiser results

The bowling and baked good fundraiser was fantastic! So many people showed up that we filled the entire bowling alley. I think the owner was shocked and the bartender was really happy, to say the least. I think she would have had, maybe, eight bowlers from 2-5pm if we would not have taken over. There were so many baked goods that we covered the entire pool table and another table twice. I got to bring home some peach cobbler and I think it may be the best I have ever had!

It was difficult to be upright and to talk and pay attention for three hours straight. So if I talked to you, I may not remember. I think my memory problems are a defense mechanism from pain. At one point, I was choked up. People continue to be so generous. Thank you just does not seem to be enough but I am going to say it anyway....THANK YOU. I really appreciate everyone that took time out of their weekend to come. Some drove a great distance. My sister and her family drove over 8 hours each direction. Others came up from the Valley. However, I don't think they minded getting out of the heat. Many, cooked the lovely baked goods that were so yummy and 100% profit for our fundraiser. Others bowled their little hinney's off. Some just came and donated money to our family. We thank all of you from the bottom of our hearts. We raised more than expected and enough for our next flight and most of our hotel stay (14 days). I am off to my first appointment on August 22nd-25th. So wish us luck! Hopefully it will lead to some much needed relief.