Denied again

Alas, the letter I was expecting arrived today - with the word I was hoping wouldn't - "denied."

"The information provided does not meet clinical criteria for coverage of this drug." Well, bite me already. They also claim that I/we - my doctor included, as he wrote an awesome letter, "all internal appeals have been exhausted." However, IF I'm still dissatisfied with their decision, you know, because maybe I'm really OK with it! I have the right to bring a civil action - wait - I'm not exactly feeling civil at the moment.

What I am feeling, is actually impossible to describe other than beyond frustrated. How is it, that I have been on a medication that has worked for me for two years, has suddenly been forced away by "Clinical Services Department" of my insurance company??? Even though, both my Internist AND my prescribing Neurologist have sent letters stating WHY I need the medication, why it works for me. What hasn't, to be exact, in the past; which hospitals I've been admitted to in and out of state, and how many times. Not to mention the IV therapy that has been used.

So where do I go from here? Since all of my meds are "off-label" as a treatment for Migraine Disease, what makes this different? How do I make them understand the necessity for me? Am I suddenly going to slowly go downhill? Sadly, that is a question I have been avoiding to allow myself to even face. And yet, I know the reality is, I may. Afterall, my quality of life really did improve shortly after starting the medication they've decided I mustn't take.

The evil, nasty person deep inside of me; is secretly wishing mean and awful monsters on the person or persons who have made this decision on my behalf. Hey, let's be honest here, migraines totally suck. I don't want to live like I did. My kids don't deserve it; my husband doesn't - man, I don't deserve it.

Tomorrow, I see my neuro; I'm hoping he has something up his sleeve. For now; I'm up for any ideas you may have. right now, I have a migraine.

Deborah

Home Again, at long last.

As good as vacation is to have; there truly is no place like home. And boy are we ever happy to be here. That's not to say we didn't enjoy ourselves, or were anxious in any way, but after 10 days, home becomes so, ohhhh, almost out of reach. The traffic on I95 and I1, honestly, I don't know how they live with it there. It was just awful. A trip that should have taken 5 hours, took us 8. But we're home. And we had a wonderful time.

This is the chalk drawing Marisa did on the Boardwalk during the "Chalk the Walk Explosion" contest while we were on vacation. She had been looking forward to this for a month. Pretty exciting. There were some neat drawings from kids to professionals - but I'm just giving up my girls today.

This is the USS Wisconsin we boarded on a very hot and sticky day. The kids loved this. They are under the turrets.

here. The size of this ship is just incredible.

My girls with a friend. I think this was on our last day. I can't wait to get my pics on a disc and developed. I haven't actually developed any of my digitals yet.


So this is what vacation does to us, it is exhausting. It absolutely destressed us. We all needed that. We were pent up with stress, each of us.

Yesterday, the kids had their friends over and gave out their souveniers and played games. It was nice to see them all. To be back in the normal life again. Frank and Marisa will be getting our bouncy dog back today. But first, he will be getting a bath; as he is going to stink. Can't wait to see him. Even Rocco has souveniers.

As far as the travelling migraine monster goes, I was attacked. The Scopolomine either wasn't working for me, or was doing better than it would have, had I not taken it. Either way, I had a bag between my legs, Zofran in my tummy, and I was holding my lips with my hand. Oh, and one hand on the door ready to jump. I don't know how my parents handled me barfing in their cars when we travelled.

On that note, it's time to make the little ones breakfast. yum.

Thank you for your well wishes while I was on vacation.

deb

Destressing.........at last

At long last, we are finally on vacation. We have safely landed at our very beautiful destination and are having a wonderful time. However; getting the pics to load has taken way too long, so I am only giving up a few for now. The lobster is Frank.

Nick looking cool on the beach. He was catching jellyfish and we do have pics of two before the beach burial. Unfortunately for Vanessa, she was stung while we were jumping the waves. She's ok, though.

One of the very few I was able to get of Cinderisa.

Look who got her hair braided! Her blue eyes are just glowing now that we can see them. She says it hurts to sleep; but she looks so pretty.

Vanessa and Papa under one of the waterfalls getting cooled off. It is very hot here. The majority of our first two days have been spent in the pools.

Nicholas enjoys the hot tub, for whatever reason. Yesterday we took the kids to see the USS Wisconsin, and we were able to board the ship. They all enjoyed that. The girls and I were able to pet a shark. A SHARK. It felt sort of like slimey sandpaper.

And then......it stormed. HARD. And they/we received 2.6 inches of rain. In a matter of just a few short hours. And it has cooled down to about 80.

Nicholas woke up up this morning with a raging fever, sore throat, headache, and after a few hours, he barfed. He just woke up from a little nap. Fevered again. Poor guy. So much for our little surprise for today. Hopefully tomorrow.

Lunch time at the condo. ta ta.

Deborah

Hope, Insanity and Sadness

Letter two has been written and sent from my doctor to my insurance company. It was a very well-written letter, as I received a copy myself today. So much so, if I was the insurance company - no problem!! But I'm not, so we'll just have to wait and see what happens.

In the meantime, I was fortunate enough to get samples from my primary doc and will be getting back on the Namenda in hopes that the ins. co. will agree that it's a necessary med for me. Here's hoping and praying they will see my need.

Ridiculous.

This week has been completely insane; we are leaving for vacation on Friday. So, like the crazy person I am, I must get everything ready, cleaned, organized, packed, laundered, shopped and bagged ahead of time. Way ahead of time.

Sadness: Today. (holding back tears) we had to drop poor Rockhead off to the kennel friend's place - Glen. It was horrible. Glen is usually there to put him in the kennel, we just hand the dog over and have to hear him scream while we escape to the car. Not this time. Frank and I had the - HA - fortune of escorting the 100 pound monster with fear and anxiety plus massive amounts of adrenalin rushing through his veins, into the cage. We are both bruised - badly.

I ended up being the last to get into the cage and calling him in after three failed attempts, he finally came in, and I'm just trying to calm him down and telling him to sit and drink because it was hot and he was panting. Poor thing. He was just staring up and pleading: "PLEASE DON'T LEAVE ME HERE, MOMMY! I WANT MY BLANKIE AND AIR CONDITIONING! I CAN'T HANDLE THIS KIND OF TORTURE!"

It was so sad and so hard to not just hug his big neck, but I backed out, and we locked the gate. The kids were on the outside calling his name, (yeah, we were on the inside of the kennel getting him in - it's indoor/outdoor, he spoils his dogs), he ran out to the kids. We quickly left the kennel out the door so he didn't see us leave; checking our bruises and various other owies.

Then he starts with the screaming. Literal. screaming. No barking or yelping - no not our big brute, he's a screamer. All the other big bull dogs, and they are big, there were 7 in all, were barking when we got there, and were now calm. But Rocco, he was screaming like a GIRL.

Christina started to cry and that made the sadness even sadder. I told her once I got to the car that it was ok, and he'd be ok once we left. That was the first time she'd ever gone when we dropped him off. I don't like to go, and have only gone one other time.

An hour after I tucked Nicholas into bed, he started crying how he missed him. guess who gets to go pick up Mr. Stinkbomb from Glen's house? Oh, yeah, you know it! I'll be here waiting for all of them, making dinner and unpacking or cleaning or relaxing.

Frank did talk to Glen tonight and Rocco was fine. he had him out of the kennel and knows that Mr. Spoiled is NOT an outdoor dog and could tell by the panting; he was keeping him cool and will make sure he doesn't get overheated, as it's going to be in the 90's this weekend. UGH!

Now THIS is totally up Rocco's alley! On a bed, with his buddy, IN THE COOL HOUSE. So spoiled. (by the way, this room and decor no longer exists. this is Nicholas' room now)

By all means, please stay cool this weekend. More importantly - pain free.

Deborah

Beneficial Spirituality

I believe the question was something along the lines of "how do I find spirituality beneficial with Migraine Disease?" And my answer is that my faith in God, in Jesus as my Saviour is beneficial in every aspect of my life, including Migraine disease.

I did, however, find myself without my personal relationship with Him, the closeness I had with Him, when I was going through the worst of my pain and suffering from the disease. It was also then, when I reached out to Him again, and trusted Him to get me through it. He did.

Just like any relationship, one with my Saviour takes great time, work, energy. But the difference with Him is that He did something for me that nobody else could ever do; He died for me. For ME! How do I walk away from that on a daily basis? But I do. And yet, He loves me. So much more than I could ever fully understand.

He loves me. He gets me through my toughest times; by prayer, answered prayer. Not just mine, but those who prayed for me. I do believe I was in terrible morbid shape just three years ago; only He could get me through that. And daily, He still does. I am thankful. Endlessly thankful.

So how does spirituality help me? Prayer to my Saviour on a daily basis. Reading my Bible and being in His House with my family, all make a difference. It is also so wonderful to see my children falling in love with Him and serving Him on their own, with their own faith. Christina and Nicholas will be getting baptized soon after vacation. I can't wait.

Praying you are headache free

Deborah

Playing with my webcam. It sure was a lot of fun watching my weirdos making faces. I had to keep showing Nicholas where the eye of the camera was because he kept looking at himself instead.

Look how big our Pancakes is getting! Now that we've separated them, Hyrup is finally eating. No more mating for these two lovebirds.

My children are strange. They get it from their Mother. And I just wouldn't have it any other way.

On a completely different note; I called my insurance company this morning regarding the Namenda. How interesting this is going to turn out to be. I have been referred back to my doctors office to tell them to appeal, as it is not MY responsibility but my MDs to appeal. With much needed information such as, why I need to take the drug like: what other drugs I've tried and failed, any adverse affects, etc.

So, I called the office with this information. Talked to the nurse who I normally talk to; and she basically tried to get the information she had more available (like in my file) from me. "Ok, so what have you tried?"

I have tried so so many different medications over the years, and have had either no luck or very bad reactions, and I honestly can't remember all of them. Can you? I explained this. And that she had my information. To which she replied, "Yes, but you have a two-volume file and this is a vacation week." Oh, I guess that would be my fault!

I need to say this first - when I mentioned this to Frank, he blew a gasket; but that's just Frank. Riiiight, or is it? As far as the insurance company was concerned, they weren't going to take or accept an appeal from me, just from my doctor at this point. Only his appeal will be acceptable. I can fax or mail an appeal, but they will most likely be disregarded as I am not the prescribing MD, and this medication is, you guessed it, "off-label."

I tried explaining to the kind man, and he was very kind, that there are only four drugs presently available for migraine, and well, I can't take any of them; and that they do, as my insurance company, already allow different off-label medications for me.

He insisted it wasn't so much the "off-label" practice, as it was the Namenda and the Chrysler portion of my insurance where the problem lay. hmmmmm. WHAT????

So now, I suppose I'm just to sit and wait for what exactly? Another letter of denial from the insurance company? Or a call from the office saying she has my nice condensed file all figured out and my med list updated and sent to the insurance company?

I have to say, this will be the second time my doctor's office makes an appeal. Since going down on the Namenda, and I am on my final week of every other day at 5mg. I am now getting 3 migraines per week as opposed to per month on my usual dosage. Before Namenda - they were daily. Oooh, goody, something to look forward to. Great.

Here's hoping I get reapproved.

Let's hear it for the insurance company, having more power than the doctor, who spent time and money studying in prestigous schools, to become qualified to write that script, just to have it denied when you really need it - by the almighty insurance company.

Hope you have a pain-free day

Deborah

Independance Day

This post is entirely dedicated to the men and women who have served and do serve our country, in order to allow us the freedoms we still maintain.






Make no mistake about it, we are losing our freedoms little by little; yet they fight. For you. For me.











Many live, but some die. A sacrifice they knew they must take; for their country, for their cause. Their life, for yours.














Have a safe and happy Independance Day.

This incredibly non-handsome monster has been cohabitating. my chest cavity. I bark and bark and bark all stinking night long; typically when I should be sleeping peacefully. NO. I have barked myself straight into a few migraines. I. am. exhausted.

This started as just a little something on Friday, not a cough or anything like that. I just felt like something in the air was sort of, you know, bothering me. This after I came to from the cryo/migraines. I still wasn't all that well from that either.

On Saturday, my voice was hoarse and I woke with pain in my chest and I knew what was up. I called in my script for the puffer, took a Mucinex and started praying hard it wasn't going to be like the last time. This is the 4th time in the last year I've had this. What gives?? I just have to say, if it isn't one thing, it really is another.

Frank and I have been trying to sort out whether the frequent and recent migraines are a direct cause from the decrease in Namenda - DUE TO THE INSURANCE CO. (still gathering info for appeal, thank you)

I will say, the cough is beginning to die itself down. a little. and, no I didn't actually go see my doctor. I don't like taking medication for everything I get that comes around. as far as an antibiotic; as I have a small list of those that I can take. So I just treat the horrid symptoms.

On a much sweeter note; Lexi spent the weekend with us. We did some visiting while she was here. First we went to Frank's Mom's house, where she demanded, "pasta" but was unsuccessful. She apparently wanted Nonna's homemade sauce.

Then we went to my Mom and Dad's. That is the three of them posing on the swing. She was very excited to have them sit with her AND get her picture taken. She is a sweet treat. I cannot believe this child is turning 20 in October. Just unbelievable.

Everytime she comes over, she demands a shower, but she doesn't normally spend the night; this time, I treated her to a vanilla and lavendar bubble bath and I even turned the jets on for her. Which of course, had her squeeling and flapping her wings! The first time I did this, Rocco thought I was hurting her, and he stood outside the bathroom barking for her in a very nervous way. Too afraid to come in, for fear of being placed in the tub himself.

Sir Stink-a-lot is getting a bath tomorrow. And, although Frank thought he should have a Harley logo on his vest; I think he's more Hello Kitty. It is afterall, all about the attitude. This pup is a major softie.

Well, I'm off to bark myself to sleep now. Wishing you pain-free days. and nights.

Deborah