Doctor Woes...

So after all that mess (see here) I think we have been wooo'd back to the doctor that pissed me off so much a month ago. We sent in the form requesting his records be transferred to the new neurologist and called to cancel his appointment this Thursday and that set off a string of calls.

The office manager (that we LOVE) called Pete and said - "what is going on?" and he filled her in to the best of his knowledge, which with his memory isn't all that great. But she said she was going to talk to the Dr. and rattle his chain a little. Pete told her that he liked the doctor and wouldn't mind working things out so he didn't have to change. So I figured I better call her and give her the true picture of what is happened. And I did give her every last detail that all culminated with us being royally pissed off.

She said she talked to the doctor and asked him if he was "gruff" with Pete and the doctor said he was because he was frustrated that we didn't want to do as he was requesting. So I gave her my side of the story:

We were okay with the idea monthly visits at first UNTIL he wouldn't give him the drug that works great for his headaches and instead was insisting Pete go to their headache clinic and actually told Pete that "MS doesn't cause headaches" which frankly is just a crock of you know what. Then the doctor gets snotty with us to boot.

She understood our frustration, she said she'd get the files ready if we really wanted to go and that she would miss us. She also said if financial hardship was part of the problem that the doctor would waive co-pays. I was surprised at that and pleased. She also told me that Biogen is now starting to STRONGLY recommend that all patients be seen monthly before their infusion and soon will be requiring it.

So - Pete is going to keep his appointment on Thursday. I can't go with him although I really wish I could but the Office Manager (that we LOVE) said she'd go in and play mediator if needed between the two of them and get to the bottom of all this. I trust her, she will call me after and tell me how it went. If Pete feels comfortable with it he will change his Tysabri infusion site to the doctors office and see the doctor before his infusions every 4 weeks. And there will be no co-pay required for these visits. Still a 70 mile commute versus a 25 mile one but some trade-offs I am willing to make.

As for the recommendation that Pete go to their "Headache Center" he's not going to do it. If the doctor won't give him the Neurontin that has been working so well for him for the past 6 years he will get it from his PCP who usually has no issue prescribing things for him.

So we may be sticking it out with this doctor. I hope on Thursday he at least apologizes for being so "gruff". I told Pete I wouldn't cancel his other appointment with the new doctor until after Thursday so he could be sure what he wants to do. I really wish I could go with him but I have a meeting and just can't take the time AGAIN on such short notice. Maybe it's better - he will decide on his own and I won't be able to influence him one way or the other?

Arrogance is NOT Acceptable from ANYONE!

Today my husband had an appointment with his neurologist. This was not his normal appointment - his doctor's office called him and said that due to the cases of PML having been found more frequently he wants to see all his patients once a month before they get infused. Biogen-Idec is still recommending every 6 months with the neurologist so this is not coming down from the drug manufacturer or the FDA. It is his preference. So we went today to see him and discuss.

Seeing him once a month is a hardship for us, we don't live nearby, also with hubby not working it is a financial hardship to have to pay $25 copay once a month instead of 2x a year. We said as much, the doctor ignored and pushed on. Well if he has to go once a month he may as well have his infusion there too because then he could do it all at once. SURE the light dawns a little more - if the infusion is done there, they can bill it. $$$$ seem to be part of the rationale at least to me. I don't suggest this to the doctor.

Hubby has been having bad headaches since being diagnosed 12 years ago. Every neuro he has seen has said this is normal (including this one in prior visits) and has prescribed neurontin to help alleviate these. But today he told us that MS does NOT cause headaches and that he suggests my husband make an appointment for the headache center that they conveniently run in their office. Of course this can't be done at the same time as a Tysabri infusion because they alternate days using the same space AND it would incurr another $25 copay of course.

Hubby has had good luck with neurontin helping with the headaches and was asking the doctor to give it to him and he basically refused. (FINE - I'm sure his primary care physician would give it if we asked) Hubby was tight lipped but again said that coming out there to see the doctor 1X a month AND another visit for the headache center would be a hardship.

Here is what the doctor said and I am quoting - "It's your MS buddy! If you can convince it to stop being active because the drive is too much of an inconvenience more power to you."

My jaw dropped. Hubby's jaw clenched. We walked out, we made the appointment he required at the end of Feb for another follow up and left. I had to go back to work so I told hubby we would talk tonight. But he called me when he got home and I just went off on how sarcastic and rude the doctor was and how I figured that the only way I would consider staying is if the doctor realized he was an ass and called TODAY to apologize.

My carpooling friend's wife has MS too, she see's a different neurology group, she is also on Tysabri and gets her infusion where my husband does. Her doctor is not recommending monthly visits and so I am going to get the info for her doctor and schedule a consultation to consider changing.

His neurologist is a specialist, he's well known, he's published, no doubt the man knows his stuff. But today he was arrogant and overbearing and I find that uncalled for and unacceptable. I will find my husband a new doctor that can do all he can with a better attitude and then I will let him know why he's losing a patient.

When will people learn not to cross me? GRRRR

Rambling Brain Dump...

Tonight is my holiday party - so excited to wear my pretty dress and hot new shoes. I think I gave up on an upd0 for my hair. I did it last Sunday and thought it looked okay - curly and up. Did the same thing last night (another practice run) and it flopped badly so I brushed it out and looked like I had a modernized bouffant type do. Not sure if I want to try again today and end up with less than fabulous hair to go with my fabulous dress and shoes because it will affect my confidence level.

This was a crazy week at work - extremely busy coming back from the 4 day weekend. A problem that won't go away kept me scrambling all week and my boss helped out and we still didn't get it right in the end. I found out that we pitched a new client this week - we are on the short list with 2 other companies for this account. It is another HUGE and high profile account and if they sign with us they will be mine. My boss warned me that the woman in charge of the project on their end is abrupt, demanding, no sense of humor, hard to please. OH JOY! I'm getting the client who's main contact is a mega bitch. During the pitch on Tuesday she was pushing to have this project done by Feb 1st and the CEO, VP and Database Manager all told her that was too aggressive and we couldn't promise to deliver by Feb 1st, that the best we could promise was Mid March. Her suggestion to speed things up? Let's cancel Christmas holiday plans for all involved employees and just work straight through. She wasn't kidding. They told her no. So perhaps with all this NO going on we won't win the client? But if we do - what a fun 3 months I'm going to have trying to please this bitch.

My health insurance changed on Dec 1st to a new company and plan. I was worried as hubby had a Tysabri infusion scheduled for Friday. If anyone remembers last January when I first started blogging - it was about the 4-5 week frustration I had getting him set up, approved and started on Tysabri. It took 4-5 weeks to get it all done. New company would require pre-approval for crazy expensive treatments and I was worried I would not get it all done between Monday and Friday. Add to that we didn't get our cards until Thursday. Sooooo - what happened? I called his doc's office on Monday to have them call and jump through approval hoops and didn't get anyone but left a message. They called me back Wednesday and I was thinking no way it would be done by Friday - but by Wed afternoon the drug was approved, the hospital that was infusing it had all the info they needed and it went off on Friday morning without a hitch. It was so easy I'm sure something is wrong. I'll probably get a bill for $5800 or something.

So that's about it - rambling update of what is happening in my crazy and boring middle aged life.

Married to the MonSter...

Lisa of Brass & Ivory asked me to talk about being the spouse of someone with MS and what it means for my life.

When I met my husband in December of 1997 he was already diagnosed with MS - had been on Avonex for 7 months and had recovered from his first diagnosed MS attack which was a doozy that hospitalized him for about a week. He was handsome, had a runners body still, muscular thighs and six pack abs. I was intimidated by how "in shape" he seemed.

I knew about MS - a close friend of the family had a severe fast progressing case and she went from being fine to being in a wheelchair and then finally to being unable to breathe on her own within a decade. It was pretty scary stuff. I also knew a friend's mom who sometimes walked with a limp when over tired but was fine most of the time. This was the extent of my knowledge about MS when I met him.

There were those who warned me about getting involved with someone with MS. My family was concerned. Friends worried that I was setting myself up for heartbreak and maybe I was but I fell in love and I took the risk.

My husband has R/R(relapsing remitting) MS - he has had a lot of relapses in the last decade but many times his symptoms would reverse themselves after a course of steroids. So the day he woke up unable to control his left leg at all and had to use a walker just to get around? Well 3 weeks later he was walking like nothing ever happened. For us MS was a day to day reality in his energy level but the real serious stuff was usually a passing inconvenience.

The MS was sometimes at the forefront and a very real reason why he could not do something or go somewhere, but many times it was an excuse too. I don't want to go I have a headache. No way to prove or disprove that, I take him at his word. Sometimes he would go out in crazy heat to do things he wanted to do knowing it would drain him and other times he'd beg off due to heat when it really wasn't hot because he just doesn't want to. I find that MS makes a nice tidy excuse to get out of things and yet I never want to accuse him of that because what if this time I'm wrong?

I have never known my marriage without MS as I said above but I did know it before MS was there in our faces daily changing everything. I miss the times when the MS was something that boiled up occasionally and then went back to a slow simmer. About 2 years ago this labor day he had the start of an exacerbation - he had the steroids to halt it but this time they didn't work. He had been on Betaserone for nearly 4 years at this point but it no longer seemed to be helping. He was not seeing a specialist and his general neurologist was way out of his element here. But he didn't admit defeat and send hubby to a specialist, he kept puttering around talking about new possible therapies but not doing anything about it. Finally after almost a year of indecision and inaction on his neurologists part my husband was fed up and asked his primary care physician for a referral back to a specialist. This doctor immediately started the process to get him on Tysabri and took him off Betaserone. He sent him to a physiotherapist to try and regain some of the lost function but it seems that it's gone for good.

My handsome husband with the runner's build has lost about 25lbs of muscle over the last decade. His thighs are thin and much weaker, his abs are no longer rippling. He has a drop foot on the left, no balance at all, and a seriously unbalanced and uneven gait. He can only walk a few minutes at a time before he needs to rest and he staggers as he goes. I admire his resolve to not give up and sit down in a chair and just let it go. I also wonder at times WHY he fights so hard - use a chair sometimes it is just to save your strength. But he is a stubborn Italian man and give up is not in his vocabulary.

He has been on Tysabri for 8 months now. His doctor says he is showing improvement in involuntary reactions. I wish he would show improvements in balance and walking ability. He doesn't feel like he's getting better. I do think his memory loss is better. For awhile he couldn't remember from day to day things that happened or people said. And he wouldn't admit it was him instead accusing the other person of not having told him. This rarely happens these days - if that is the Tysabri I do thank it for that much at least.

I feel like an outsider sometimes. I know more about the disease and treatment than he does because I take the time to educate myself. But no matter how much I know the one thing I can never know is what it feels like, or how it makes him feel. I know how it makes me feel - scared, helpless, alone - and I don't have the disease.

I love my husband and I HATE what this disease has taken from him and by proxy from me. He is still R/R and there is still a chance he could turn around and start getting better but I fear that the best we can hope from the Tysabri is to stop the disease from taking any more. Because it has already taken so much it just doesn't seem like enough. I worry that he will cross over and become secondary progressive, if this happens there is no approved treatment and the insurance would no longer pay for Tysabri. At that point it becomes a wait and see game as in "wait until he dies" basically.

For the overwhelming majority of people with MS it is not a life threatening disease. I worry all the time that the man I married is not in the majority. I keep that worry to myself.

I can't think of a Thursday Thirteen...

So I'm going to ramble and see how many things I get:

1. I can't believe today is only Thursday. I don't want to do another day this week.
   
   
2. Saturday is my nephew's birthday - he will be five! He is having his first kid party and I agreed to take his baby brother (9 months old) so mom and dad could focus on the kids and the party. There is an adult party at 4pm - BBQ for the grandparents, aunts and uncles, should be fun. I still haven't gotten him a gift. Any ideas for a great gift for a 5 year old boy that is ALL BOY?
   
   
3. I am a judge for a certain species of livestock that I'll not name here cause it's a small world and I'd rather not draw too many people who know me here. Anyway I have gotten emergency phone calls to replace another judge this weekend and next who was in a terrible car accident last Friday night on his way to a show in NJ. He is in the ICU and if he survives he has months of intensive therapy to get him back on his feet. It makes me sad - he is my parents age, the nicest guy, he and his wife have no children by choice. Thinking of his wife all alone sitting by his bedside hoping he lives is so sad to me. I fear that kind of situation myself. By taking on these shows for ICU judge I make some extra unplanned money but I hate how I'm making it.
   
   
4. Work is picking up - things are getting busy. RBT is sufficiently humbled and was moved into a cube where everyone walking down the hall can see his screen - no more slacking off for RBT! Thank GOD I am not in such a position.
   
   
5. Car pooling is working out better than I ever imagined. We are alternating days now and it's saving me a ton. Only filling up the tank once a week now - WooHoo. And carpool companion's wife is now set up and approved to have Tysabri at the local hospital - thanks to my hubby getting it pushed through, it was a real help to them.
   
   
6. Hubby seems to have quit smoking for real - he still seems to have the occasional cig - mostly socially like at the lake with friends last weekend. But he can go for days or weeks without one too. I'm proud of him.
   
   
7. I bought hubby a gift to celebrate his success with quitting. It was delivered to the house today. I wish I had it delivered here to work cause he will get home before I do and I told him I had a present coming. Also told him to NOT open the Amazon box until I got home so will drive him nuts for about 2 hours! LOL I got him a new ipod Classic 80 gig to replace his 30 gig ipod Video that hasn't been working well and has crappy battery life. With this new one we will be a 4 ipod household. LOL I need to figure out what to do with the old ones. I think I'll take the video back and use it as a portable hard drive instead. He will be surprised and hopefully happy.
   
   
8. I have a ton of pictures on my camera that I should dump. I also should take all the photos stored from years of digital picture taking off my hard drive and upload them to Picaso. I'm sure my family would enjoy sharing them.
   
   
9. I'm scraping the bottom of the barrel here trying to find 13 things, so I think I'll stop. The Thursday Nine doesn't quite cut it but it's all I got folks.
   

Saying Thank You!

Hubby is all set for Saturday - he will get his Tysabri infusion at this new place, insurance is set, drug is going to be delivered, everyone is in line and all is done.

The office manager at his neurologist's office has been an angel through all of this. She has jumped through hoops, chewed new assholes, and moved heaven and earth to make it happen.

And we are grateful! So in addition to calling her and telling her she rocks and how much we appreciate everything she has done - we are sending her these lovely flowers. I hope they make her day! Sure would make my day if someone sent me flowers out of the blue!

THANKS PATTY!!!!!

Back on the Tysabri Wheel of Death...

We found a place that will do hubby's Tysabri on weekends or in the evening. Now we are like hamsters on a wheel running and running and running and getting nowhere. The insurance approval is not happening. This place gets the drug through our specialty pharmacy and so we're waiting for that to happen. People keep calling my husband and he is getting confused and frustrated. I now have to make phone calls to figure out what is happening and what he needs to do. I really wish they could follow instructions and call me in the first place.

Again with the martyr attitude too, he says to me "maybe I should just stop treating this and then no one will have to worry about it." If I could have reached a hand through the phone and smacked him I would have.

He has an appointment for Saturday morning IF we can get the drug from the pharmacy in time. If not he still has an appointment on Friday at 1pm for the old place.

Once we get him moved - he better not ask to move his treatment again, or he's on his own! ARGH!

It's no wonder I'm exhausted...

Today I made calls to the vet to find out about my old cat - waiting on a call back now. Kind of peeved that no one has called yet - I guess the doctor is working late cause they said he'd call tonight.

Also hubby emailed me how he was going to have to stop taking Tysabri because he can't keep missing work and no one gives the infusions in the evening or on weekends. We had found one place that would do evening infusions and then they failed to mention they don't take our insurance! UGH As for him getting fired? we've been through this 50 times already - this is why he has the FMLA coverage but he claims they will find some other reason to fie him. SO I went on the Tysabri website and printed out every infusion center within 100 miles of us and started calling. I found one about 65 miles away that does do evenings and weekends and accepts our insurance so now to get him switched over to that facility. What a nightmare - nothing moves fast that is for sure and his next infusion is due next week. I told him he will have to go to the old place one more time even though he doesn't have time. But I don't know if he will agree yet.

I went to the gym today at lunch and felt somewhat energetic afterward but also ravenous so ate far more than is appropriate while snacking this afternoon. Another UGH.

Tonight I'm going to bed early. It looks like I'll be spending a great deal of time on the phone tomorrow figuring out hubby's infusions.

Now for some good news!

My husband had his first neurologist appointment yesterday since starting the Tysabri. His last visit was in November when the Doc took him off Betaserone and prescribed the Tysabri. The good news - he has improved! After a pretty thorough physical exam that checks strength as well as standard reflexes we sat down to talk with the doctor. He told us that hubby's reflexes had improved since November and were basically normal where in November they were sluggish. His gait has not improved however and this is hubby's largest area of concern. Doc said after watching him walk down the hall and back that his opinion is that hubby's balance is off and so he is compensating for that with a wider stance that gives him more stability but that this type of gait keeps the muscles constantly contracted and will tire him out in no time at all. So - he is continuing the Tysabri and we are going to get him an appointment with a Physiologist that works at the MS Clinic at the Rehabilitation Hospital where his doctor also works. He said that he can "retrain" hubby to walk with a more normal gait and help alleviate some of his problems.

So that is the MS update - it's good news - after only 3 doses of Tysabri he is showing improvement and it can only get better from here! Today I feel hopeful, I believe he will get better, I am happy.

Random Thoughts...

We got a letter from the insurance company on Saturday - Hubby's 2nd dose of Tysabri was billed and the claim rejected - they said it had not received pre-approval. But it was approved for 6 doses so I don't get it? I think the infusion center screwed up and billed it incorrectly. I am wondering what I will need to do to facilitate this getting paid? If they send the bill to me ($5,128) it will definitely NOT be paid, but hopefully they will take care of what needs to be done. I better make the call before his next infusion just to make sure they don't turn him away.

I'm about to surpass $1,000 in donations for the MS Walk and still have a few stragglers who have promised to give. This is twice what my original goal was. People are much more likely to donate to things like this when you have a personal sob story to tell. I wish I didn't have a personal sob story.

I had good intentions today - I went out at lunch, I had decided, I was going to join Curves (the gym) BUT their hours are 6-noon and 3-8pm! Really? Not open at lunch time and there they are in the middle of office buildings all around. I would think lunchtime would be a busy time. I was annoyed, I was going to start working out at lunch, and NOW? I CAN'T!!!! The only other gym nearby is the YMCA and it costs twice as much! I can't afford twice as much. So I'll walk when I can and just deal, sucks when you get up your nerve to do something and then you can't.

My nephews are the cutest little boys on the planet! I took pictures of them yesterday (with me) and they were wearing their Thing 1 and Thing 2 shirts that I got them at Universal. :) I had a Thing 2 shirt on too! I'll try to drag them off the camera tonight if I remember. Funny thing about those two boys - the oldest is almost 5 and you'd think he was my child instead of my sister's - he is so much like me it's not funny! The youngest is more mellow - maybe more like her? But the older boy really loves to torture his baby brother - he is constantly in his face, kissing him and trying to hug him and mauling him. Poor baby is really annoyed by his brother most of the time.

Reminds me of me and my sister - I used to torture her. Having a little sibling is like having your own private punching bag! Your own private servant! I got all the good roles when playing games. Princess and the servant girl - of course being the older sister I was always the princess and I treated that servant girl like dirt but of course. So my older nephew being very much like me will likely reap the benefits of being the oldest child - just hope his baby brother isn't a total tattletale like my baby sister always was! :)

Today's the day...

Hubby get's his first infusion of Tysabri! Yeah! Hoping that he has no side effects and feels better soon! I am hoping for a miracle with this drug - but I've read of it having miraculous effects on others so it's not impossible.

Since I've complained about work a fair bit here's a bit of the good - I am working from home today. I connect via a VPN and can control my desktop just like I'm sitting at it but instead I'm in my nightgown, in my recliner chair, in my living room. That is a nice perk that I am allowed to do that sometimes. I will take 4 hours of personal time to take hubby to the infusion center.

Speaking of the infusion center - I may have a hard time biting my tongue while there about how very RUDE they were to not call back when I called every day for a week! But I will try to let that be water under the bridge. Hubby may not do the same though - he likes to take people to task for incompetent behavior. It's part of his charm (sometimes).

So there is my rambling start to the day - hopefully good news to report later.

UPDATE - Things went well, he had no side effects, no negative reactions, got a bit impatient that we had to wait and there was some confusion about co-pay etc. But once it was all figured out we were in good shape and here is the best news of all - no co-pay for this procedure - none at all!!!!!!! So no worries about the pocket book. He has his next appointment for scheduled for four weeks from today.

SUCCESS!

Finally - after 8 days of frustration my husband has an appointment next Wednesday to have his first Tysabri infusion.

Also after being told that "L" was the only person who could help me and leaving at least one message a day for her to please call me. Someone else called HIM at his office to schedule the appointment.

Oh well - he has an appointment I can now breathe easier.

Day 4 - back to the whining - still no appointment

I just followed up with my husband's case manager, the infusion center has not called her back, the field person she said she'd try to send didn't get to them today but she also called and has not had a return call. The case manager said if she doesn't have any contact from them by the end of the day she will start working on an alternate site tomorrow morning.

I'm beyond livid. I hope that we do find another site to have this infusion at because these people obviously have NO concern for customer service if a phone call can't be returned for four freaking days.

Oh and another kudos for my dad - who is as we speak driving my husband to a dr.'s appointment in Albany. I am going to meet them both for dinner after his appointment and we are treating Dad of course!

Day Three in my Quest to Schedule an Appointment

Still getting voice mail for the Chemo nurses. Left another message - "I'm not trying to be a pain BUT my husband has been without treatment for a month, we started trying to schedule this in the beginning of December. The insurance is approved, the doctor has signed off, everything is in order, ALL I NEED IS A DATE FROM YOU! Please would someone call and schedule this appointment?" Then I called my husband's case manager at the manufacturer because I knew she was back in the office today. I told her my frustrations - she said she would make some calls, escalate this and would absolutely follow-up with me by the end of the day. I told her we would take the first available appointment, anytime, any day, just get this scheduled ALREADY!

So now I wait-AGAIN! I hate waiting!

Today's end of day update - still no call back from this place. The case manager from Biogen called and they didn't call her either. She has a field person in this area and she is going to send them to the site tomorrow to get to the bottom of this. I told her I would go over there myself if I thought it would help, she said she'd let me know. So tomorrow is Day 4 with no one deigning to reply to my voice mail and I have to say I am royally PISSED! I asked about switching to a different infusion center and the case manager said that was an option but that it might further delay as the insurance paperwork would have to be redone. So for his first infusion at least she wants to stick with this place. But she understands my frustration at least and is responsive to my calls.

It's Monday - a.k.a. BITCH DAY

I have just arrived in my office. I am settling in after my long drive, going to get a steaming hot cup of hot cocoa and then I'm going to start calling that infusion center and if that receptionist tells me to be patient even once today I will not be nice - I will in fact tear her a new asshole. Today I've got my bitch on!

10:00 AM Update - called - got put through again no answer from the "chemo nurses" (the Tysabri) infusion is done in a chemo center) and I end up in a generic voice mail so I leave my message and tell them I expect to have this appointment scheduled TODAY in a firm voice. And now I wait - for 1 hour - I'm calling again at 11 if they haven't called me back.

10:44 AM Update - they called back - the ONLY person who knows anything about my husband's case was given my message on Friday (and she didn't call back) and now today she is out sick. There is NO ONE else who can help me???? And now I have to wait for tomorrow and hope she is back in. Is it just me or is it the height of STUPIDITY to have no back-up person for just such occurrences?

So another day I have to wait. If this doesn't get settled tomorrow I may request a new site and forget these people altogether -even if it means I have to drive further to take him.

Almost there...

I finally got to talk to the case manager from the drug manufacturer this morning, she said if I could try to clear things up with the insurance company that would be wonderful. So I called the insurance company and it was a simple case of someone being sloppy and not doing their job properly. The prior coverage form was received, scanned, archived, noted in his file, BUT the one little box that you check to waive the pre-existing condition clause was not checked as it should have been done when all those other things were done. So finally we have contact - now I am waiting for a call back from the Infusion Center to schedule an appointment.

Okay you had to know I was going to complain about something right? Well here it is - I called the infusion center at 10:30 this morning and left a message on a voice mail box explaining and asking them to call me back right away. Well by 2:30 when no one had called I tried again - the receptionist wouldn't put me through again and told me that if I had left a message they would call me back and I just needed to be patient.

Is she freaking serious? BE PATIENT? This stuff should have all been taken care of on 12/21/2007 and one screw up after another by varying agencies has meant that we still don't have an appointment for him to get this infusion. I think I have been MORE THAN PATIENT! I would just like people to return their phone calls in a timely manner and with the level of urgency required by the situation. I think this requires great urgency because it has been dragging on for 4 weeks, four weeks in which my husband is not getting any treatment, 4 weeks where he continues to get worse with nothing slowing it down. But I need to be patient, uh yeah.

So I'm going to give her until 3:30 and I'm calling back - I promised my husband I would do everything in my power to get him that appointment scheduled TODAY and dammit I don't want to let him down.

In other news - he had his performance review yesterday - and they had the nerve to give him bad marks for attendance because he used vacation time as sick time. He didn't have to take any unpaid time - every day he took was a day he had earned. It makes me mad that he had to use his vacation time to be sick in the first place and now they give him bad marks on his review for it? Well I have the FMLA paperwork in hand and will be getting the doctor to fill it out. They won't do that to him again!

Edited at 4:40pm - called at 4pm got put on hold, gave up, tried again at4:30 - office is closed for the day and I got an answering service. So 6 hours later - she couldn't be bothered to return my call. I'll be calling 1st thing Monday and if I don't get a response I'll be calling every 1/2 hour until someone answers my damn question. It's time to be a bitch I think.

The 7th level of hell - health insurance company policies...

At this point I'm not really sure who is to blame. I have spent the better part of the day making or waiting on calls about getting Tysabri approved for my husband. It doesn't help that there are so many parties involved in this process. There are the people at Biogen (the manufacturer) and I have yet to actually get his case manager on the phone so I get someone else's interpretation of her notes. There is the doctor's office - they have done everything they were supposed to do but are still trying to help figure this all out. There is the Infusion center - they can't set up an appointment until the insurance approval comes through. There is the insurance company (who the case manager I can't get in touch with has been speaking to). There is my husband whose short term memory is shot and who is stressed and confused and can't remember who said what. Finally throw me into the mix, I have authorization to speak on his behalf to all but the Infusion center because he hasn't actually become a patient of theirs yet so we haven't filled out all the necessary HIPPA privacy forms.

So here is my day - 1st call to Dr's office - spoke to confused secretary who told me to call Biogen. 2nd call to Biogen - can't get our case manager so speak to whoever is available and find that everything has been sent from dr's office and tells me to make appt for Infusion center. 3rd call back to Dr's office this time speak to billing manager who knows what is going on and she really helped me. 4th call back to Biogen to direct line for case manager (given to me by billing manager - bless her!) but got voice mail. Left detailed message and asked her to call me TODAY. Waiting on that call - after which I may have to call the Insurance Company myself to figure out WTF the hold-up is.

The problem has to do with us changing insurance companies on 12/1/07 and then requesting a therapy that costs $30,000 a year. Normally they approve this drug - BUT they have a pre-existing condition clause, they will waive this if you can show that you were covered continually under a different plan with no lapse of coverage. We did this - form was faxed on 12/21/07 should be a DONE DEAL. Then they needed preauthorization forms from the doctor which he faxed on 1/4/08 - again should be a DONE DEAL.

If it is indeed a done deal no one has informed the infusion center so they will not schedule an appointment. There are just way too many cooks in this kitchen and I can't figure out who's burning the sauce and I'm getting pissed!

So friends, this has been my day - in between working at my real job that pays for the uncooperative insurance and the rest of my bills.

Now I have to pee but I'm not leaving this desk until the case manager calls - enough is enough!