Beyond tears...

I am so frustrated.  This week has been so confusing and irritating.  Emotionally, I am beyond spent.  We are still going back and forth with the doctor's office, the infusion center, and now for some reason, the oncology department.  I've been told at least five times that my time is blocked out at the infusion center, only for them to call an hour later with some new crisis.  They need to confirm something, then there is an issue with the dosage, then an issue with the scheduling (can they do it every other day?), then a problem with oncology. (Still don't know what their issue was.)  Then they didn't know if they'd have enough medication, and it would have to be special ordered. Could they give me a time estimate on how long it would be to order? Of course not.

They'll talk to Adam, say they'll call back, and then call me when I have no clue what the previous conversation was.  Adam has asked that all calls go through him because at this point, I've had it.  I can talk to my doctor's office without issue, but the others are driving me to tears.  It doesn't matter who it is - they just talk circles around circles, never making sense.  At this point, I'd rather be admitted to the hospital for a few days to get the treatment.  If they don't figure this out soon, I'll be in the hospital from the stress.  

 

T minus 3.5 days...Part Two

Why is scheduling such a big deal?  The infusion center at San Juan booked our appointment for Monday morning.  Later on, the word was "oops...we can't do that."  The center had openings Monday, but not Tuesday.  They couldn't schedule me next week unless I wanted Wednesday - Friday.  We told them we had a commitment Friday night that we can't get out of, and more importantly, we have to find a baby sitter for the days I am at the infusion center.  I got the feeling that the scheduling lady could care less.  (Also the same lady that almost made me blurt out a long string of expletives by getting me pissed before I had any coffee yesterday.)

After a couple hours of trying to figure it out, I got a call from my doctor's office.  I asked to be sent to the downtown infusion center instead.  I didn't want to risk the chance that the woman we dealt with yesterday would be treating me.  If you can't pull your $%# out of a hat, you don't need to be poking me with needles.  The downtown location blocked out time for us Monday-Wednesday, leaving me some time to recover before the concert.  We are waiting for the referral to be send over in order to schedule the exact time, and that should be taken care of today.

If it weren't Josh Turner, I might have forgotten it.  But it is Josh Turner, and I REALLY need to get away for a little bit.  Even if it is just a day or two.  We haven't just gotten away for a night since we saw Willie Nelson at Ironstone Winery.  We were on a very tight budget for that trip, and this time we can afford a nice hotel and hopefully a nice meal out.

If you are the praying type, please pray that the IVIG treatments help, and that I do not suffer any side effects.  This feels a little like scheduling a c-section and knowing the exact moment your child will be born.  I am relieved, happy, excited, scared, and nervous all at once. 

T minus 3.5 days!

We finally have an appointment for my first IVIG infusion.  It took a lot of work on the part of my doctor's office to get this going.  We have a PPO, and for whatever reason, they have decided to not require authorization on many treatments.  The list of what does not need approval is strange and doesn't make much sense, but that's beside the point.  Because I did not need authorization, I did not have an authorization or referral code.  That just wouldn't do for the infusion center.  They wanted hard proof that they would get paid.  

Ugh.  This was like deja vu of the incident a year ago when I was trying to get breast cancer screening approved.  Round and round we go.  The insurance company mailed a letter stating that they will pay the charges, but we have to wait for the infusion center to get the letter.  My doctor's office sorted that part out, and said it should be a few days.  Okay.  I can wait.  I hate waiting, but I can wait.

For some unknown reason, I got a call today from a lady at the infusion center.  She told me the exact opposite of what the doctor's office told me.  "You have to pay 90%, your insurance only pays 10%."  WHAT?  I tried explaining that the doctor's office already sorted it out, and that we were just waiting a letter that was already in the mail.  She kept insisting I call to get a letter, and was going round and round.  I finally told her that I'd call back in a couple hours.  I couldn't take anymore and still remain civil.  

Of course, the insurance company reassured us that our maximum would be $1000 out of pocket, and we should be reaching our yearly maximum soon anyways.   Now we're trying to work out the scheduling, which is proving to be a pain in the rump.  It shouldn't be, but it is.  Murphy's law, I suppose.  I've heard that once you're in the system, getting monthly treatments is MUCH easier.  I sure hope so.  

I'm crossing my fingers and praying that I don't have treatment late next week.  Aside from wanting to start as soon as possible, we have a Josh Turner concert next Friday that I would really hate to miss.  We already booked a hotel room on the water for a little R&R, and I really don't want to spend that time at home or in the hotel room feeling sick.  Sigh

Good omen...or good veins?

Today we trekked downtown again for a neurology check-up.  I often see the doctor's assistant, and sometimes rotate between the two.  Since they work so closely together, I get the same quality of care, but with a LOT less wait time for an appointment.  When you're seeing the head of neurology, that might mean a few weeks compared to the next day. 

Anyways, I think that we got a lot accomplished today.  We talked about a treatment plan, and decided on trying IVIG, and then steroids if I absolutely must.  She said that she should get word back from my insurance company pretty quickly because we have done all of the groundwork to prove the diagnosis.  I am crossing my fingers that they will pay most of the cost.  Each infusion is around $12,000, and I may need more than one a month.  Usually my insurance caps my out-of-pocket expense at $100 for those things, so I am praying and hoping. 

Because this is so rare, she needs to figure out what the loading dose is, how many days that will take, how often I need it, etc.  She is also getting approval for a port.  I'm not sure which type I'll be getting.  The assistant said that she'll get with the infusion center and their PICC nurse to see which might work the best for me and the treatment.  It may be a PICC line, but I'm hoping for a mediport that is under the skin.  Ports under the skin are a little more work to get in, and it will be sore while it heals, but the benefits make up for that.  PICC lines can't get wet, and they kind of dangle there.  So...we'll see.  Either way, a port will make it easier on me and the nurse administering the infusion.

There is a risk of a serious reaction with IVIG if I am IgA deficient, so after the appointment it was off to the lab.  Normally my veins play hide and seek, and I usually end up with 3-4 sticks in my hands.  The blood flow isn't great, and the phlebotomists struggle to get enough blood for the lab work.  This time, she got it on the first try in my elbow!  That has to be some sort of good omen.  With so many things going wonky lately, I can appreciate something so little.  I hope that good luck keeps up. :)

Fences, Veggies, and Jewelry

This weekend was a blur of gardening and fence building.  I sat in the garden beds and pulled weeds for hours, which in retrospect was a BAD idea.  I worked for about four hours, took a nap, and woke up so sick to my stomach.  Adam and the neighbors managed to get the old fence down, and my dad helped Adam pick up lumber and cement.  Most of the holes are dug, and the poles just need to be leveled and cemented.  Next Saturday we'll get the pickets up and have a shiny, new fence.  I think I might miss the wide open space.  It makes our yard look HUGE. ;)

We also got some of our veggies in the ground.  I bought 11 tomatoes, mostly romas, some heirlooms, and a couple that will be good for slicing.  We also got a few kinds of squash, some cucumbers, and three bell peppers.  I need to find some lemon cucumbers, though.  I LOVE lemon cucumber wedges with a little sea salt sprinkled on top. Lemon cucumbers are not available in stores, so growing them is the only way to get any.  We also got a big flat of marigolds and lady bugs for pest prevention.  Right now, the debris from the fence is stacked in front of the shed.  It is serving the purpose of killing the grass for me the easy way.  Once we get that cleared, I'll be planting a three sisters garden there.

This weekend also brought the arrival of my medical alert bracelets.  Considering the oddball diagnosis and the risks of suddenly stopping medication, I decided that it would be best to wear a medical id.  I joined Medic Alert because they allow you to input your pertinent medical information online, and you can change it at any time.  This includes my conditions, medications, my doctor's contact info, and emergency contacts.  In the off chance that I'm a goner, it also states that I'm an organ donor.  I ordered two bracelets - one with teal writing, and one with white writing.  They're inscribed "Stiff-Man Syndrome, Fibromyalgia, Allergic - Sulfa, Tetanus Vaccine."  Hopefully I'll never need it, but I feel better having them.