Aw Lisa, this doesn't seem fair at all.
4 months is a huge delay, especially since it doesn't sound like you even see a light at the end of this long tunnel to even know whether or not you'll be able to access Remicade treatments again. I am with Wendy in being completely baffled by your system. It seems so confusing and appears to place the burden of figuring out all of the red tape or possible mechanisms for access on top of the patient who is too ill to manage it.
Since you have an immunologist prescribing yours, is it possible that they just might not be as familiar with all the ins and outs and tricks that a rheumatologist's office might know better how to help with? Unless they are already prescribing it as often as other specialists, maybe they could call another office to see if there exists a way to get around these hurdles. Sorry if this idea is nonsense but I just WISH so much that somehow there has to be a way for you to access this treatment that has been the only thing to help you! It just kills me to think of you having to go without. Maybe call the Remicade people directly? Up here, I have a Remicade 'facilitator' who helps to look after the approval process for govn. access. It is in their interest to help because otherwise they lose the sales.
You are NOT a burden to anyone! Just look at how much you contribute to so many here on KA Lisa... there is no doubt in my mind that even if you can't get up to do dishes or whatever, you are the emotional, spiritual, guide and glue that contributes more than you probably realise to the benefit of every single one in your whole family.
I know what you mean by wondering which is worse, having the benefit of this and then having it pulled out from under you and having to go back to how it was, or to not have known the period of relief... but you don't have to look at dealing with the next 20 years... just get through this day and this week... somehow, just trust that there are going to be better days ahead for you again!
Hugs for strength and endurance!
mig
