BLAH!

Sorry for the lack of updates....I got another NASTY headache (in addition to the one that has been hanging on over a month) that just got the best of me. It came on Friday night and by Saturday I couldn't get off the couch or see well. Unfortunately, my benefit of the doubt, I called the Neurologist to let them know of the severity of this headache to see if there is anything I could do as all the tricks I knew off weren't working. We'll three days later I called them back with a very disappointing voice mail (as you NEVER get to talk to a human in that office) requesting that the doctor sign over my care to another one that gives a darn about my care. Thankfully he did my request and I will be seeing a new doctor next week. BUT that still leaves me without care with this headache for over a week, UGH. Today I couldn't take it anymore and I went into see my Family Practice doctor in hopes that she would have some words of wisdom for me. She did some blood work to rule out any of the NOT obvious issues and then I got a shot in the bum with some pain reliever. It works alil but I can feel it coming back, grrrrrrrrrrrrr! Well see what the next few days will bring
Avrianna had her last day of swim tonight and for me it's a bitter sweet as it will be nice to have our weekday evening back to ourselves, but I will miss seeing her swim and compete. She continues to do great in school, but we are having some attitude issues lately. Like that isn't going to happen ever again, LOL.
Danny is rocking in therapy and in life in general. He is doing wonderful!
I will try and update more often, sorry :( I know I've been lacking on it. I'm almost done with me New story, I can't wait to share it with you.
Please don't forget to pledge donations for my MS walk in April. We NEED your help in finding a cure to this disease! Please click on the link to the left :)

Head's UP

Had to share........Danny during PT today !!!!!
Tummy Time
He had been enjoying Tummy time more n more lately :)

Woohoo Picking his head up all by himself!!!

He hasn't been able to do this in over a year ~ He's my HERO!!!!!!!!

I'm so PROUD of him!! ((HUGS))

Danny duplicated this about a half a dozen times in a matter of 30 minutes. In addition to holding it up for a peroid of time :)

Thanks to Avrianna the photographer as she took better pics then I did :) I LOVE my KIDS !!!!!

Wrapping UP

No NEWS is GOOD news!!!! I am starting to recover from my relapse, slowly but surely. I'm finding that the meds I was put on to "help" me has only made things worse. So I've started to decrease my meds and I've been doing better each day, Yahoo! I went to Physical therapy yesterday and got some great exercises to help my muscle strength as I have lost strength and balance in my right side. I know have some vision issues, but nothing that will really hurt my abilities right now. My left eye now wonders and I also see double vision in that eye. Now I just pray I can keep these relapses at bay for awhile.
Danny is doing well :) Knock on wood!! He is doing good with his therapies and he's started to be more social not only with the therapist but his nurses. I'm enjoying watching him trust and interact with them. We are excited (ok I am) about getting a new nurse and she is starting in the middle of next month. I think she going to be a wonderful fit to our extended family :)
Avrianna has her last week of swim and then we are going to take a break till next fall. She is doing phenomenal in school! I can't express how proud of her. I took Avrianna to Disney on Ice last week and we had wonderful time together just her and I getting some girl time :)
We are starting to talk about our vacation next month.....in hopes that I can keep ALL of us healthy enough to go down to our condo in Florida for Spring break. Cross your fingers!

"Precious Real Estate"

Well this last week has been a very busy one for us. Last Wednesday I finally got a call from my neurologist's office and unfortunately the nurse had no information for me. Guess I didn't understand why she called if she didn't have any answers. Maybe because I had called everyday for 5 day leaving messages, LOL. When I started bombarding her with questions on the phone she pulled up my record and she did tell me "oh I see you were suppose to be on Zantac while on predisone and Ibuprofen".......um, I'm almost done with the treatment and NOW you tell me that. Great! So all the questions I had left for them the last few days and including the ones I had just hit her up with on the phone still no answers for, so she was going to ask the doctor and get back to me. Well I wasn't holding my breath, lol. Surprisingly enough she called back the same day as the doctor wanted me to go in for a MRI, due the recent function loss in my legs (again left a message 5 days ago stating this, grrrrr). Thankfully the day wasn't a total wash as Dan & I had a date afternoon, we went out for lunch and then we went to see Extraordinary Measures, what a good movie. Some of the movie hit really close to home and it was heart breaking to watch but I thought they captured the aspects of being a parent to a chronically ill child and being a doctor to a chronically ill child very well.
On Friday I was able to get in for an MRI, which was terrible. I was actually looking forward to some down time (how sad it that) and maybe even catch a nap as the test was to be 1.5 hours, of which I can't move AT ALL. I got this terrible headache in there. I had thought my head was splitting open. I have a high tolerance for pain but this was unbearable. So I had them "pause" the testing and they were able to put a foam wedge under my head which helped enough for them to finish. PHEW! I left there in tears....tears of fearing what is happening to me, what are they going to find, what are the not going to find. A MRI is bittersweet with this disease, as you hope they find something so you have merit to feeling like you are losing you mind, soul and body BUT hoping they find nothing as this just means more damage. Stuck between a rock and a hard place!
Saturday Avrianna had a swim meet in Clintonville that the whole family went to go cheer her on. It wasn't the easiest feet to get everyone on the road at 5:30am but I did it. KEEP ON KEEPING ON! I'm so glad we did. She did awesome. Way to GO, Avrianna. Danny enjoyed getting out and watching he sister swim too. Plus we had Papa n Claudia show up so Avrianna had a nice cheering squad :) She was entered in 6 races and placed 3rd, 2nd, 8th, 14th, 22nd and only DQ'd on one...BUT the one she DQ'd on she got to the wall first so she won the heat :) After the swim meet Avrianna went to a girlfriends house for a sleepover. Dan and I went out to dinner with some friends and Danny hung out with his nurse. It was a busy but great day.
I got some of my books that I ordered for living with MS and changing my diet to a low fat diet to help with the symptoms. So I've been busy looking at recipes and reading up on challenges n changes in life with one that has MS. I'm not one to sit and await around, I don't have a life style for that, and I'm not one to throw in the towel when one thing doesn't work so I've been working and researching on how I CAN change my life. I know all to well how "accurate" these doctors are so I am not going to let this set back get me down. I will KEEP on KEEPING on till I get the answers that I NEED. With that being said, I called on Monday to see if the doctor had seen the MRI I had done on Friday. His office had called me after hours even, WOW, to let me know that he had and what he "saw". Well he didn't see any new "issues" with my spine or back, yea me. So I asked what about in my brain? Well they didn't do any images of your head.....WHAT? Now wouldn't you think that if I have known lesions in my brain and am having a major relapse that you would want to check it out? The nurse said "well the Dr says that the spine is "precious real estate" as he has probably told you already how important it is to have a clean spine image". Ok and my brain isn't? Where the hell do they get off? Plus thanks alot as I have lesions in my spine, but there just isn't any new ones with this replase, so glad you slapped that in my face. I then ask so where is this relapse coming from..........I get the brain as an answer from her. WOW ~ that took a college degree to figure out. I so can't wait to see the doctor for my follow up appt on Tuesday. I already have a 2 page list of issues that I have with his office and questions about my MS.....and believe me they WILL get answered when I'm there. Then I will make sure he signs over my care to another physician in his clinic as I'm done with these games. It's GO time!!!
Avrianna along the way had gotten this cough, that's just a cough, and won't seem to go away mostly during the night. She'll cough here n there during the day but at night it's the killer. Well I think she shared it with her brother. Gotta love that! Danny woke up very junky today, low sats, didn't tolerate Mr Jiggles well, very pale, and then to top it off he threw in a seizure a few times. There was no holding back today! Which is all ontop of a nasty ear infection we've been trying to clear up the last few days. Grrrrrrrr! She's sleeping peacefully and I'm hoping the coughing doesn't start up. He's now sleeping peacefully on 2 liters of oxygen and I'm hoping he improves by morning. Wishful thinking, I know but can't a girl dream?
Tomorrow Dan and I are going to try and spend some much needed time over at the old house. We have someone that might be interested in it and it's a disaster inside. With all that has been going on with me it just wasn't a priority lately. So I need to get it cleaned out and cleaned up alil before we let them in next week to see it. We pretty much just moved the stuff we we wanted to the new place and left the rest to be donated here there and everywhere in the old place. I would be so embarrassed if someone was to walk through it now, YIKES!
I have started another story about my life and where I am today in hopes that maybe it will help someone someday. I'm not a writter but once in awhile I get this wild idea and there's no holding back. I can't wait to share it with you. It's been great therapy to just write :) To see my first lil story click on the link to the left in Our Stories titled My New Dreams. I've titled my newest story My New DreaMS ~ The Box of Chocolates.
Don't forgot to pledge in your donations towards the MS walk I'm doing in April! Please click HERE and that will get you to my personal page where you can donate or join my team and help walk along with me to help raise money to find a cure for MS. I can only hope that I will be able to see it in my life time :)
Thanks for stopping by to check up on us! Please leave post a comment or sign our guestbook to let us know you stopped by. We LOVE hearing from you too. Happy Valetine's Day if I don't post before then
"Life is NOT measured by the breathes we take, but by the moments that take our breath away"

The Self- Healing Coach

I have forwarded this entry from one of the site I've joined....The Self-Healing Coach. It really hits home and is SO true to my illness. I have to say I LOVE this women! She is my inspiration! This is my new way of thinking a BIGGER and BETTER ME!!


The “Think Big” Uprising

Posted: 02 Feb 2010 09:01 PM PST

Which drug should I choose to manage my MS? (That’s a question from someone who’s thinking small.) When are they going to come up with a cure? (Another question from someone thinking small.)

I read versions of these questions every day from people with MS all over the country and the world. And to them I say: If being healthy is what you want, you’re thinking too small. It’s time to Think Bigger.

What does it mean to think big about MS?
It means that what we deem possible for our health must go beyond the limitations set by Western Medicine. In our culture, Western Medicine is our religion and our doctors are our shaman. We invest immeasurable authority in them, giving them the power to hex us with a death sentence, or conversely, praying to them to cure us. But when we give up our power like this, we are denying our ultimate responsibility to care for our own bodies and play an active role in our healing process. When we give up our power like this we forget that Western Medicine is just one model of thinking, it’s not reality.

Western Medicine seeks to eliminate symptoms of disease primarily with the use of pharmaceutical drugs. It views the various systems of the body as distinct and separate from each other. It’s only now sorta kinda beginning to recognize the profound connection between the body and the mind. Western Medicine does not concern itself with detoxifying, balancing, and strengthening the body. It’s a useful model – an invaluable one – in certain areas like trauma, injury, and acute infection, to name a few. But it is a limited model, especially so in it’s ability to treat chronic illness, and when we believe blindly in it, we allow all other possibilities for healing outside of this model to fade to gray. The rules of Western Medicine’s reality become our rules, and with an illness like MS, which is said to be “incurable”, this blind faith keeps us from believing that getting well is even possible. What could be smaller thinking that that?

So how can we begin to think bigger?
Step 1: Commit: Your new mantra should go something like this: I commit to healing and being healthy. I commit to the stubborn, irreversible decision that I will heal, no matter who tells me it’s impossible. I commit to healing no matter how badly I may feel in any given moment. I commit to healing no matter how slow my progress toward health may seem. I commit to this state of endless possibility. I hold this commitment to myself sacred and I commit to doing whatever it takes to achieve my outcome.

Step 2: Become Singular: If you truly want to get healthy, then you must make everything in your life equal healing and everything else must be subservient to that. If you’re stressed about something, ask yourself what it is teaching you about being healthy, despite seemingly doing the opposite? If you want to get well, you need to constantly re-frame everything in your life to equal healing, and you must put your health first. Think your kids come first? Think your job comes first? You won’t be able to take care of your children or work if you’re sick. This may seem blasphemous to you as you read this. If so, I bet you’ve spent your entire life putting other people’s needs ahead of your own. And getting “selfish” is going to be the healthiest – and likely the most profound – thing you can do.

Step 3: Develop your health category: For most people with chronic illness, their definition of health is being without the symptoms of disease. But this is thinking small. If you want to think big, you need to grow your definition of health bigger. You need to have the greatest appreciation of health than anyone you know. You need to have a vivid vision of what health looks like. You need to spend time imagining the feeling of health in your body. When was the last time you remember feeling vibrantly, robustly healthy? Go back there. Revisit it, run it through your body, feel it again, refamiliarize yourself with that feeling. Spend a lot of time here. Remember, you have a huge category in your mind for disease. If you want to get well, you need to create an equal and opposite category for health.

Step 4: Take Action: Another mantra: I will look beyond the boundaries of the standard Western Medicine treatment for MS, searching for any healing modality that I believe could assist me in achieving health. I will explore all options I can find with the dedication and fervor of someone who believes the word impossible is a synonym for challenge. If you haven’t yet watched the David Blaine video I recently posted, watch it now. Use it as inspiration. Blaine is a man who doesn’t believe in the word “impossible”. Neither should you.

Experiment, Revise, Repeat: It took you many, many years to develop your illness. It will take time to unwind that and recreate a state of health instead. Be patient, but be persistent. Try as many new treatments as you need to, track your results, revise as needed, and continue exploring until you reach your goal and beyond. With every new treatment I tried, I found something that helped. Sometimes it was one small change, one small addition that made me feel a bit better. But when you stack enough of these on top of each other, you will have tipped the scales in favor of health. Don’t discount anything. Wisdom and healing come from places you don’t always expect, and enough subtle adjustments can lead to massive change. I will be posting soon about all the discoveries I’ve found that have worked for me so far. That’ll be a good springboard to start from. But I’ve just scratched the metaphorical surface. The possibilities are many.

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