Bureaucracy!

Needed a space to rant about our health care systems. The layers of bureaucracy are just insane and so frustrating!!!!!! I'm trying to get beta seron. It is really hard to motivate myself to contact people so that I can start paying for this really expensive and injecting it into myself. I wish they would just make it easier for me--mostly I wish I didn't have to deal with all this, there are enough other things going on . . . but that's beside the point.

So I called Betaplus--to check on my application for patient assistance. They told me I qualified just today so tomorrow I can call their pharmacy and get a 90 day supply delivered. When she told me the price I said my insurance was actually $5 cheaper so I'd go with my insurance.

So, I called my insurance--after lots of automated button pushing--I talked with someone who told me that I could only order a 30 day supply and it was going to cost $60. Now Betaplus was cheaper. It turns out I was going by a quote given to me at the beginning of the year when we were officially under our new PPO insurance but because of Xavier's outsourcing of their health care plans the switchover hadn't reached Anthem so I was being quoted prices for the HMO which we had in 2007. Craziness. I didn't actually lose money or anything but just all the phone calls makes me insane--

So now I need to call tomorrow and hopefully can still get the betaseron through the patient assistance program.

While I was talking to the insurance company Dennis was talking to people about our Flex spending account. We signed up for the government health spending account at the beginning of the year. We thought we only had one chronic condition and didn't take out the full amount of pre-tax dollars--next year we'll know better! They have this cool little debit card and you can use it just like a credit card to pay for all your copays, out-of-pocket expenses etc. It feels like free money to me because it comes out of every paycheck before taxes. I've been loving it.

Well, then our account was flagged. I guess randomly account are flagged and you have to submit your receipts. Not a huge deal but kind of a pain because although we keep everything we have mountains of paperwork, insurance claims, doctor bills, hospital bills. I pay lots of stuff online and children's hospital has a complicated, somewhat messy online billing system. Hopefully a new system is coming out in July. So we called when we were flagged and they were nice and said to just send everything and they would sort through stuff. So I printed out the bills I thought matched etc etc. It wasn't a huge deal but took the whole of nap time one day.

Well, we were flagged again. Mostly it was my MS stuff--radiology bills. Dennis called to find out why we were flagged again. We just want to know where we can use our money so that we can avoid the hassles. Children's hospital is suspicious because we could be doing plastic surgery. Radiology is suspicious as it could be radiology tests for doing plastic surgery. Really ridiculous. I guess there is a lot of people trying to do plastic surgery on the governments dime!

Dennis asked if he could speak to someone to find out how they decided to flag certain records and they told him that it was actually done by a separate company. When he asked for that company's name he was told that he couldn't speak to them. It's silly but infuriating. The levels upon levels of bureaucracy!!!!

Too Much Time!

I have spent far too much of my time today on ms. Because of the whole heparin issue I started thinking about where beta seron is made and so I decided to call. No one knew where it was manufactured and I had to call a couple of places and finally spoke to a nice nurse who spoke to someone and found out that it is manufactured in the US under the watchful eye of the FDA. Of course she was quite good at her job and knew that I wasn't just calling about that. I just hate that I'm going to have to start taking this and that I kind of have to admit that I really do have this thing.

They have surely labeled me as crazy. And sometimes I feel as if I am.

Then I spent time tonight filling out forms for patient assistance. i don't think we'll qualify which makes me not want to spend all the time filling papers out--i have a similar problem with the medicaid forms for my son. But I also hate the thought of paying for this drug. it just doesn't seem fair. i didn't do anything to get this and now i have to spend our money on this instead of xyz. just sucks.

I've set a personal deadline of May 1 to start on betaseron. I decided that I had better get into action and order the meds and set the date with the nurse to come and teach me how to give the shot. I was a little frustrated that the company didn't make more of an effort with me--they are going to get tons of money from me and I have little desire to start sticking myself with needles. I guess I kind of fell through the cracks since I didn't start immediately.

But now I'm hoping to get a call this week and hopefully get signed up for some program for helping to pay for this thing. I just got a little freaked out this morning after read a nytimes article
about insurance companies switching their tier 3 drugs (like beta seron) to tier 4 where instead of a standard copay you have to pay a percentage of the actual drug cost. Scary!!! I guess more and more insurance companies are turning to this kind of a plan for all these high-priced drugs. I don't know what we would do . . . no reason to stress yet . . .

They did send a training kit which arrived last week. The boys were excited about the package so I opened it and on top were the sharps disposal containers. Kind of freaked me out--so surreal that soon they'll be part of my life. Dennis took the boys outside to play so I could freak out in private. I organized the spices. Things seem better now. It just takes time.

This time from my diagnoses to starting on meds has been wonderful, just time to kind of adjust but with no real symptoms and no meds it's hard to remember that I even have ms. Making all the phone calls and getting the training package is starting to make it seem a little more real.

Nurse Meeting

I love this practice! Today I met with the nurse practitioner to get the ball rolling with the drugs and also to have her explain more about MS. It was really great--we talked forever! She felt really good about my prognosis since I had probably had MS for such a long time (my first episode was probably 10 years ago). I guess they can tell alot about how the disease will progress by looking at how you handled the first attacks. I also really liked how skeptical she was about all the drugs. She said they are what we have and have shown to help, but they aren't a cure. And no one knows how MS will affect you--you could do the drugs and have no attacks but maybe you wouldn't have had any even without the drugs. I appreciated her honesty. She also said that sometimes the drugs actually cause more problems then the MS would, but the research still shows that they are probably helpful in the long run.

Pregnancy and nursing offer some protection from MS but usually women have one attack in the first 9 months after having a baby--my Christmas episode fits. She too recommended I nurse as long as I was planning--really only one more month. I went ahead and filled out the drug company info so they will look into my insurance etc. and then hopefully they will ship me some betaseron within 2-3 weeks. Then I can set up an appointment with their nurse (whom Kelly said is excellent--yeah!) She'll come to the house and teach me (and Dennis) how to give the shot. Three months after starting the drugs I'll come to see the neurologist again and probably get an MRI done again. I guess they also do lots of bloodwork to make sure the betaseron isn't causing problems with my liver and a whole host of other body functions.

We also talked about all the other things that might be caused by MS. It's definitely a whole body disease. If I have any problems I'm to call and they'll help me figure out if it's MS related and if there is something that can be done for it. I was really happy to hear that there are lots of things they can recommend. I told her about my occasional numbness in my legs and she suggested I talk to a physical therapist who does some type of "taping" which has helped a lot of people with their numb feet--maybe no more tingly toes ;) I guess they work with PT a lot and are also open to some of the alternative treatments, especially for people with primary progressive MS because there just isn't a lot they can offer them.

I told her how happy I was to be with these doctors. And kind of told about how unhappy I was with my first doctor--I was good and didn't mention any names! But of course she saw my chart and knew exactly who I was talking about. She ran into Rhonda at a conference and was shocked by all the things that Rhonda did, doling our advice, finishing spinal taps etc--especially because she's not even a nurse! I guess Rhonda does lots of talks about MS and Intimacy which are really well received--I can't imagine that at all! Such a small little MS world. At the Waddell center (where I'm going) it is a nonprofit so they don't schedule patients too closely together. I think that was the feeling calm I felt when I met with Dr. Melanson and also with Kelly today. What a difference that makes.

She was also just really upbeat and positive, even excited by the state of MS research and how fast things are changing. She gave me a hug as I said goodbye.

MS Walk

Our whole family is going to the MS Walk in Indy on March 15. We've created a team "The Walter Walkers" and even have a website:

Click here to view the team page for The Walter Walkers
If the text above does not appear as a clickable link, you can visit the web address:
http://main.nationalmssociety.org/site/TR/Walk/INIWalkEvents?team_id=110146&pg=team&fr_id=8551&s_tafId=71005

I'm not really big on raising money--especially because we'll probably be doing a walk-a-thon for spina bifida this summer but the link is there if anyone is interested.

MS-wise not too much has been happening. My feet and legs go though tingly numb periods which is annoying and kind of this reminder that I have this thing, but it's not horrible. I got to see my dad get a shot. Since my mom was talking while doing it she made him bleed a little, but I guess usually it's pretty painless. The shots came in these little cases with everything all measured and included so I'm sure once I get the hang of it, it should be pretty easy.

I'm meeting with a nurse March 17 to discuss MS in more detail and start filling out paperwork for betaseron. We're starting to wean Xander in preparation. Despite finding out that betaseron is probably ok to take while breastfeeding, the general feeling is not to chance it. Since he's 10.5 months we'd be weaning him soon anyway. So far we've stopped the going to bed feeding (which he doesn't get 4 nights a week while I'm at work) so this weekend it went pretty smoothly. I like that we have time to wean him, hopefully it will be better on my body. With Dominick I walked around with wilted cabbage leaves in my bra.

I'm really looking forward to the MS walk. It will be fun to spend time with the family. And we're even thinking that we'll have babysitters (yeah nanna and gramps!) so perhaps Dennis and I can enjoy a little night out--it's been far too long!

Happy Valentine's Day!

I feel like singing from the trees or at least through the library stacks :) Just met with a second neurologist--she was great! My family doctor had recommended the Waddell Center which is part of UC. In order to get an appointment with them I had to fax all my records and then they had to be reviewed And Then I was able to make an appointment. Since today was the soonest appointment I also made the appointment with the first guy since he had sooner openings. But after that horrid visit I really wanted to wait to start treatment until I met with this doctor. I'm so glad I did!

She was wonderful. I kept all my clothes on--except for my shoes and socks. We looked through my MRIs and she explained what we were seeing. She really wasn't overly concerned by what she saw, said my brain showed very few lesions. There was a larger one on my right side but said it looked consistent with MS. I guess if I had any problems with balance that lesions might be at fault, but I'm not really. There were lots of lesions on my spinal cord in the thoracic area. Mostly the spinal cord looked like wisps of smoke were running through it. She explained though that the amount of lesions does not correlate with the severity of the disease. Obviously less is better but she's seen people with a heavy lesions load and no symptoms while others have few lesions but lots of problems. Crazy disease!

She recommended we start on the disease modifying drugs soon. And when I asked her about breastfeeding and drugs she said it would be fine to wait until I'm finished breastfeeding as long as I start the drugs in a few months. So I'll talk to Xander's docs on Monday but I think if we wean him around a year--what I was planning anyway--then I'll start on betaseron after that. Yeah! No emergency, fast weaning. No need to to worry about bottles and formula etc :) Breastfeeding is just so easy and so much a part of what we do. Part of me was sad at the thought of stopping it and part of me didn't want to add new routines and hassles to our lives--when we're going to be adding new stuff anyway.

She recommended Betaseron as perhaps the best drug for me. It is injected subcutaneously every other day. My dad is on it and he has had good luck with it. The main side-effect is "flu like symptoms" which is now only in 60% of people or something like that--with my luck I'm just counting on that. But she said there are things that can be done to alleviate this and it only lasts for 4-6 hours after the shot. And it is supposed to get better after 2-4 months on the shot.

In one month I have an appointment with the nurse practitioner to explain in more detail about the drug and ms. (So much nicer than the big binders I was handed by the first doctor!) Then we'll fill out all the paperwork and I guess a nurse from the drug company comes to your house to teach you how to inject yourself. Since I was looking to breastfeed about 2 more months she said that by the time we went through all the paperwork and insurance stuff it would probably be that long.

The first doctor left me with this big feeling of urgency and advancing disease. Dr. Melanson made me feel much more calm. I feel as if I have this thing but it's going to be more of an annoyance than anything. She recommended staying healthy--avoiding people who are sick. Any kind of an infection, sore throat, cold, uti all can cause my immune system to go into action and ms symptoms can result. She even had a word for this type of reaction which wasn't considered a full relapse usually. I kind of wonder if this is what happened at Christmas because I had some 24 hour virus before everything started.

As far as diet she recommends a healthy diet, a multi-vitamin, and getting enough omega-6 & 3s. Since both boys love fish we're currently working on this one. This week we're going to try a curried cod with spicy yogurt sauce--I picked up a Rachel Ray cookbook at the library :) Dr. Melanson was happy to hear about my yoga class and I'm going to really try to fit in another class or two because exercise is also important.

I know it's a chronic condition and all but I just feel so much lighter and happier. Happy happy day :)

Waiting

I'm waiting for my second opinion. The first doctor was ok, but his nurse was pretty awful. I found out from them that I have active lesions and a lot of them in my brain and along my spine. He suggested starting on the "disease modifying drugs" as soon as possible. But I decided to wait for my second opinion and to give me time to figure out what to do about breastfeeding. So I've been researching, talking to lactation people, my family doc and we'll also talk to Xander's doctors.

Dr. Reed said that the active lesions suggested to him that "something big was coming" he was kind of surprised that I was doing as well as I was. So he also said that maybe I would keep being fine. This is a very frustrating disease!

So I wait until my appointment, February 14. I've talked to the coordinator who said usually it's not so busy and there is a nurse who you can get into see quickly once you are an established patient. She described the nurse as a real sweetheart--which is pretty much the opposite of the first nurse I saw. I think I'll be starting on drugs, I'm guessing betaseron or copaxone. I've been trying to learn a little about each one. Betaseron is an injection every other day and copaxone is everyday. I kind of like the idea of everyday because you can't forget as much also copaxone doesn't have "flu like symptoms" as a side-effect. My dad has been on betaseron for over 10 years and has had few problems. It's stronger and works faster than copaxone so because of all the active lesions maybe it would be a better choice for me.

Both of them aren't cures they don't treat the "attacks" or "episodes" like I had over Christmas. They supposedly lesson your chances of having episodes and keep new lesions from forming so that hopefully you won't become disabled by the disease. Funny that I can use that word here and not when talking about Xander. I guess here it is a possible future that I'm hoping to avoid. with Xander, he's my baby and in the present. I haven't officially been diagnosed with a "type" of ms and may have to have a spinal before even getting an official ms diagnosis. (the spinal tap rules out other diseases that might possibly be causing lesions and it also shows if there are proteins (or some other thing) that have crossed into the spinal fluid that are another positive sign of ms. the spinal tap, plus mri, plus history/symptoms can give a positive ms diagnosis). I'm guessing I have relaxing/remitting ms which means symptoms come and go. this type often eventually becomes progressive where the symptoms don't go away and new ones keep coming. At least this is how I understand things and why I need to get on these drugs so that my body attacking nerve connector thingys and parts of my brain will stop. The damage that has been done can't be undone but the hope is to prevent new stuff.