#my doctor didn’t even prescribe the 90 day refill my insurance covers so i have to pay the 30 day prescription instead out of pocket 😕

[heartual]

calling my doctors office on a whim to set up my appointment before i talk myself out of it and their office is closed boooo

[jenroses]

Fun times on the prescription refill calliope below the cut:

1. Fondaparinux: This medication is the only anticoagulant that a) my insurance covers, b) I am not allergic or otherwise sensitive to, c) that doesn’t cause me great pain administering it and d) doesn’t make my hair fall out. (keep in mind my hair is a half inch long, this is not a major consideration, but given a choice I will choose the thing that does not make my hair fall out.) I’m also stable on it.

2. Therefore almost no doctors have heard of it, I had to fight tooth and nail to get it prescribed and eventually did an end run around the doctors who should have known enough about it to prescribe it but didn’t “feel comfortable” even though they told me the other option literally increased my risk of death (and caused me great pain and made my hair fall out.)

3. I can safely go a day without anticoagulation. I cannot go multiple days without risking a DVT or pulmonary embolism. I’ve had at least 1 dvt and four PEs, so this is important. Because of my general inflammation level and exercise intolerance, I am very high risk for clots and the only reason I’m not fully therapeutic level on anticoagulants is that I have other meds that muck around with how I process anticoagulants and so I need to be a little lower or I bleed. This is a balanced system which requires that I take this drug EVERY DAY or I could stroke out or have an embolism. My last two embolisms were silent other than SOB. They formed in situ, rather than migrating. It’s Not A Good Idea to muck around with this.

4. So I did a lot of research into every alternative and they either contained things I’ve reacted to or they are specifically excluded from my insurance as “too new” or experimental. I’m genetically prone to not handling warfarin well, in a “I go from not anticoagulated to peeing blood with no warning” sort of way. Xarelto caused me so much joint pain that it was probably responsible for the failure of at least six rheumatoid arthritis drugs. Lovenox is fine at 40 mg. They wanted me to take 180 mg twice a day. That shit HURTS. It was not good for my mental health. The fondaparinux is once a day and the same volume as the 40 mg of lovenox, it rarely hurts at all. 

5. Because Fondaparinux is not prescribed very often, hardly any pharmacies carry it. I used to be able to get it at my local Savon, but not walgreens, bimart, costco or any of the other ones I called. 

6. Savon only filled 22 the last time they did it because their distributor stopped carrying it.

7. I called around, a lot, finally resorting to the specialty pharmacy that handled my Humira, and they said, “Oh, the hospital pharmacy will have it.” 

8. The hospital is 100 miles from my house. But they will ship it!

9. I have new secondary insurance, which is good, because my primary took this generic drug and made it tier fucking 4 which is a 50/50 copay on a drug that’s about $1100 per month rather than the $10 per month I paid last year. Secondary insurance will cover it... IF ANY PHARMACY CAN FIGURE OUT TO DO THIS CORRECTLY. It took some doing to get it covered but they finally did it.

10. They filled the script and sent me 30 syringes because it’s dosed by the syringe, one syringe a day.

11. I called for a refill. After not seeing or hearing anything for 5 days, I called and they said, “It’s sitting here ready for pickup, and the copay is $300.”

12. I had them rebill it, and they sent it, and I recieved... 12 syringes. 3 days before I was due to run out. 

13. I called and asked wtf this is not a month’s supply and they said, “Oh, your doctor prescribed it that way.” Then the person I was talking to made some noise about “36 is a 3 month supply so 12 is a 1 month supply” and I said, “That’s not right, you got this right last month, why are you doing this?”

14. I called the doctor’s office, and they said, “We prescribed it the way we were told to prescribe it,” and we tried to figure out how they got 12 and I was like, “Maybe they thought since it was .4 ml per syringe that it was 12 ml total and got confused?” (the math isn’t quite right on this, but anyway.) 

15. I called to get it refilled when I had like, 8 or 9 syringes left, like 5 days after I got it, and they said, “We’ll send the request to the doctor.” I said, “Make sure it’s for 30 syringes per 30 day period.”

16. Nothing happened. So I called the doctor’s office and they sent a note back. Nothing happened. 

17. I called the pharmacy and then the doctor’s office like... 6-8 times in a 4 day period. 

18. Every time the pharmacy said, “We’re waiting on your doctor” and the doctor said, “we don’t have a request.”

19. I finally made everyone talk to each other and then it got REALLY screwy. 

20. I talked to the pharmacy, called the doctor’s office, waited, then the same day, the doctor’s office called me and told me the pharmacy told them that the copay was too high and it should be sent to a different, even harder to deal with pharmacy. 

I called my secondary insurance company to ensure that yes, they would pay for it and they said, “Oh, they never even tried to bill us.”

Reader, I might have lost my shit. I managed to keep it together enough to call my doctor’s office back to say, “Send the prescription back to that pharmacy. I will call them and give them instructions.”

I called the pharmacy back, and said, “You will be getting the refill within minutes. DO NOT let your pharmacist send it back. Bill the first insurance, and then bill my secondary insurance the way you’ve had to for every other script you’ve filled for me. The copay will be zero. Please deliver the medication as soon as possible.”

And then I waited on hold, for the last 20 minutes of a total of 3-4 hours on the phone.  

And when she came back to talk to me, she said, “We have to order it, so it won’t be there until Friday.”

NGL I assumed at first she meant 10 days from now. I said, “This Friday?”

And yes, this Friday. I’ll still have 3-4 syringes on hand when it gets here. 

Anyway, that’s where 100% of my executive function for at least a week has gone. 

Insurance won’t allow a 90 day fill on this drug this year. This drug that I will probably be taking for YEARS. 

[kythe42]

Today has just been a crappy day overall and I need to vent about a few things.

Today I went to see a new specialist because my ENT hasn’t been having much luck treating some of my symptoms(intense ear/sinus pressure sometimes with nausea/dizziness that comes on due to various triggers, but sometimes a specific trigger can’t be identified), and he wanted me to see an allergist that also has an immunology speciality.

The doctor himself was friendly enough, but I was less than impressed with the way that office was run. First of all, I was already annoyed that I had to be there much earlier in the day that I wanted to be. It’s very difficult to get myself moving in the morning, and having to rush around early to get ready to leave the house when I’m barely awake is very anxiety provoking. I know that this is my problem and not theirs, but it just sucked that it was the only time that really worked logistically.

So anyway, after they finally called me back, they wanted to do a lung function test, which I hadn’t been expecting, but I’ve done them plenty of times before, so it didn’t seem like a big deal, Unfortunately, my results on those tests vary depending on where I have it done. My results have always sucked at the ENTs office, but done at the pulmonologist’s office my results would be fine because different equipment was used. So the equipment they had was similar to what was used at the ENTs office and therefore my results sucked. They wanted me to use an inhaler and then redo the test. The inhaler they wanted me to use is one that I’ve had bad reactions to and I even stated so on the new patient forms which I submitted online several days before my appointment. So they knew it was listed as a drug allergy, and they knew which inhaler I normally use from talking to me on the phone. If they didn’t have my inhaler brand in the office, and had no plans to obtain it, they should have contacted me to make sure that I had my own with me. I did have mine with me, but since I haven’t needed it in over a year, it was expired and they wouldn’t let me use it for the test. If I knew in advance that I’d be needing it, I would have gotten it refilled from the doctor that prescribed it. The allergist said he’d call in a prescription for me so we could redo that test on my next visit. I told him my insurance wouldn’t cover it without prior authorization, and he said he’d just call it in anyway and then if it was rejected he’d do the prior authorization. I don’t know why he couldn’t just do it to begin with. I’m like 90% sure it’s going to be rejected because it’s a more expensive inhaler. It’s like he’s wilfully choosing to waste time.

Anyway, after the lung function test, I had to wait in the back waiting room outside the doctor’s office(separate from the front waiting room in reception) and shortly after sitting down back there, I started having a reaction to something, and the same sort of reaction that I was going there to get a second opinion about. I got this intense pressure in my ears that was really painful, and I was starting to feel a bit nauseous and light-headed. I didn’t think I smelled anything, but I asked some of the staff if there were any air fresheners around, and they said no, that it was against office policy and that they weren’t allowed to wear perfume or anything. Looking around I really couldn’t find anything that I thought would be the culprit. I started wondering about the potted tree at the end of the hall because I read that mold can grow on the soil of potted plants, but if that was the problem, there’s a good chance it would be a problem with the potted plants at home, too, so I ruled that out. Honestly, it could have been from some product that another patient was wearing earlier. The smell might have faded, but remnants of the chemicals could have still lingered in the air for hours afterwards.

I never did figure out what it was, but as I was checking out, I saw a sign on the wall next to the reception desk that I hadn’t noticed earlier which asked patients to refrain from wearing perfume/cologne. I said to the receptionist that I just noticed the sign and I never wear that stuff cause I’m allergic, but I wanted to know why no one had informed me not to wear that stuff before I came to the office. I said that a fragrance free office policy doesn’t really work if people aren’t notified before they get there. She said that they just hoped people would see the sign and then refrain from using those products the next time they came in. I seriously wanted to facepalm at that. I told her that they really should inform people before they come in so that they don’t trigger other patients. She said they’d take that under advisement, but I don’t have much confidence that anything will get done. Just my best working theory is that I was reacting to some product another patient had been using that lingered in the air after they left, since I’ve found no other explanation, and it just sucks that I have to be afraid of getting sick in an allergy clinic because they really aren’t enforcing their own policies.

Then backtracking a bit when I had the skin prick test done, I didn’t really react to anything other than the control prick. This really isn’t a good test for me since out of the other three times I’ve had this test done, I only actually had skin reactions to allergens once despite the fact that I’ve been having reactions to things like grass, mold, and dust for well over a decade. The last place I had it done performed an additional intradermal test were they actually injected the allergens deeper under the skin. I assumed that this was going to be done today since they told me I had to be there for three hours, but nope, I have to come back next month for that. So I’m really pissed off about that. not just at the inconvenience of having to come back, but because I’ll have to go off of my allergy meds again and suffer again for several days with painful pressure between my eyes and the nausea that goes along with it. The doctor suggested switching to another med that I only have to stop three days before the testing, and I guess I’ll try it, but I don’t know yet how effective it will be for my symptoms, and the best case scenario is that I’ll still be suffering for a few days when this could have and should have been taken care of today.

So yeah, this clinic just really didn’t make a good first impression on me overall, but unfortunately it was the only one I could find in the area that accepted my insurance, and I’d have to go a lot further to find someone else that does. Here’s hoping they can actually figure out a way to help me after all of the testing is done because it seems I’m having more and more problems, both at home, and out in public. I won’t hold my breath, though.

Then, as if my day wasn’t crappy enough, there was an incident with the medical transportation service I use. The company has been made aware that I have a severe allergy to fragrances, and that air fresheners are not to be used on the buses that I’m riding. So I got on the bus after it arrived at the clinic and didn’t see any air fresheners. I did think I smelled something off, but I wasn’t really sure so I didn’t say anything. Then after being on the bus for awhile I started feeling really ill. I got that severe pain in my ears, I became nauseous, and at some point my eyes started burning and my throat felt a bit tight. I told the driver that I was feeling really sick and asked if there were any air freshers on the bus. She said there was before but she took it down. I said so it’s not on the bus anymore? She said that it was in the trashcan. I told her that there was no difference between having the air freshener in an open topped trashcan and having it hanging up and that really there shouldn’t have been any air fresheners on the bus at all that day before I got on, because the smell tends to linger in and enclosed space. Actually, putting it in the trashcan was worse because it wasn’t visible to me, so I got on the bus without even knowing what I was walking into. The driver actively tried to hide the fact that it was there. She then snapped at me that I’d been added to her schedule last minute and that she had no where else to put it. Really, if she saw on my file on her tablet that I had this allergy and that there was air freshener on the bus, she should have called dispatch to tell them that she couldn’t take me and to have them get another driver to come. I said that I was feeling really sick like I was about to throw up, and that I couldn’t be on the bus with that thing. So she agreed to bump me to the top of the list before the other passenger on the bus and took me home first.

She did apologize after taking me home, and all I could really say was that she should have informed me of the situation before I got on so that I would have had the option to refuse the ride. She said she’d do that next time. I don’t know, I guess it’s just stupidity/lack of common sense on her part, but the fact that she knowingly let me get on the bus with an airborne substance she knew I was allergic to feels like assault, especially since it’s much more serious than a case of the sniffles. I’m definitely going to be filing a complaint about this, but I’ll probably hold off until I can speak to my social worker tomorrow, since I’ll probably come off way too abrasive if I try to do it on my own. I feel like the way they do things, they really aren’t going to be able to keep me safe unless they flat out ban air fresheners on the buses. It’s just too hard for them to try to make sure there aren’t air fresheners on the specific buses I’ll be on for any given day, especially if they keep changing the schedules around last minute.

Just I need them to take this more seriously. I am in the process of trying to see if there are other treatments for this sort of reaction, but so far I’m just being told to avoid my triggers by every doctor I’ve consulted about this over the years, because each exposure is just going to make it worse. Really, it’s a toxic reaction that affects the nervous system instead of or in addition to an allergy, but most people don’t understand what that means, so I just say allergy even if that doesn’t really explain the whole story. I rely heavily on this service to be able to get to doctor’s appointments, and I need to be able to ride the buses without being poisoned. If I have to, I might even try to get the American’s with Disabilities Act involved. I just know it’s probably going to be an uphill battle. I practically had to threaten them with a lawsuit just to get them to make any effort at accommodations to begin with after I nearly ended up in the ER after being trapped on a bus with multiple air fresheners.

I’m sure it sounds unreasonable to people that I’m putting all of the burden on others to keep me safe, but honestly I’m doing all I can do on my end and it isn’t enough. I do have meds I can take to deal with the asthma portion of the reaction, but it doesn’t help with the other stuff, and I can’t avoid exposure like my doctors keep telling me to if I don’t have cooperation from other people. I can’t even try to protect myself by wearing a mask because once hot humid air builds up inside of the thing from my own breath, I can’t breathe with it on. Maybe an oxygen tank/mask that would keep bringing me a supply of cool fresh air would help, but my insurance isn’t going to cover that, and I’m not sure I’d even be able to lug something like that around without help.