Warning: Kinda losing it, need to vent a bit

faerywings

I am new here and I know in my heart I have very little to complain and worry about. But I think that if I don't vent this out, I am going to drive my dh crazy with my ramblings and saying the same thing over and over- "I can't take this any more!"

Little background- I was dx'd with DCIS in Jan.I also have late stage/chronic Lyme disease (as does my whole family, dh is disabled from it). My surgery is scheduled for March 3. Up until yesterday I have been doing pretty ok with it all. It has been a nightmare trying to coordinate drs appts and stuff between the two diseases and drs along with really bad weather in NJ.But I had been coping pretty well.

My Lyme dr wants me on IV abx before my surgery. Insurance doesn't like covering them because according to them, chronic lyme does not exist. >:( So on that front, I have been battling insurance ot get a PICC line inserted and to cover the abx.  I got the PICC in finally last week, and still working on the abx.  I order one week of the axb (over $1300/month for Out of pocket) and will go week by week if I have to. (Thank god for credit cards!!!) . I called my BS to say that I will hopefully be starting it by the end of the week so I will have a few doses in before the surgery. Lyme dr is very concerned that my immune system will not be able to handle the surgery and that the lyme will get much worse.

BS's nurse calls me back and says that the dr does not like to do surgery if there is an active infection. Well, if she wants to wait until there is no more Lyme, I'll be dead from the BC (I know I am being very dramatic there but you get the idea). Now the BS wants to call my Lyme dr to confer on what best to do.

On top of all that they are predicting more snow for March 3. 

Whenever people would ask me how I was feeling/holding up, I was pretty upbeat. Yesterday hit me like a ton of bricks. Last night I had a dream that it was invasive and they were hooking me up to chemo immediately.

I am not good with change or things being up in the air and I am trying to cope with two different diseases and all I know is that I feel like I am never gonna make it until Monday.

Thanks for reading. I hope that this is "normal."

edwards750

faerywings...It is certainly normal to have all that anxiety and fear and to add insult to injury you are battling another disease. So sorry. Good your doctors are going to confer; they need to. Cant identify with the weather obstacle because I live in the deep south and while we have had a few snow issues it is nothing compared to what you guys are dealing with. No offense but I could not live in the north and deal with weather issues like that. Having said that this is absolutely the worst part of the process...the waiting either to find out test results or pre-surgery. It seems like an eternity but once you have the surgery it will go much faster. Take a deep breath, try to focus on other things and do rely on family and friends for support. I admittedly don't know much about Lyme disease; I cant conceive of dealing with that and your husband being disabled from it plus the financial worries. You are right though at least you have a means to pay for it. So post when you have questions we can answer or just feel like venting. This is def the go to place to do that. We are all here for the same reason in varying stages and grades. It was and is my lifeline. Keep the faith and keep us posted. Diane

NatsFan

Faery - You cannot be the only Lyme disease patient who needs surgery or has developed cancer! Others must have gone through this before. Are there Lyme disease forums like BCO where you could connect with other Lyme patients who have needed surgery or developed cancer?  Maybe you could get an email or phone consult with some nationally recognized Lyme doc since your case is unusual. 

I think it's good that your Lyme doc and your surgeon are conferring - it sounds like each of them is worried about what the other's treatments will do, so if they work together hopefully they can come up with a plan that best protects you.  

I don't have Lyme but I've had friends with chronic Lyme and it's been terrible for them so I feel for you.  Their experiences have taught me so much Lyme awareness.  We have a cabin in the Maryland mountains where deer ticks are rampant, so I'm extra careful about ticks and on a couple of occasions have needed the single-dose of doxycycline as a preventative.  I've been lucky so far to avoid it.  The dog has not been as lucky - he was dx with Lyme last year, but fortunately it tends not to be chronic in dogs.  It's a terrible disease, and it certainly doesn't help when insurance companies don't recognize when it's chronic.  Just one fight after another. 

Good luck and keep us posted! 

faerywings

Thank you both so much!  I have always been a very much in control, pro-active person, especially since we all got so sick over the last decade.  I have been the "glue" so to speak. It is really hard on me to have all of this insanity and daily ripping the carpet out from under me. And I hate hate HATE having to ask for help, especially since I have been asking for help for so long. But I had my pity party yesterday. You should have seen my hysterically sobbing-- I had a few tiny bubbles in my PICC line and I convinced myself that I was going to die. OMG!! hahaah!!!!! I think that it was my way of getting the cancer/Lyme worries out by letting myself cry over something so truly ridiculous.

I had a nice afternoon with my BFF catching up about our kids and boyfriends/girlfriends of theirs, and learning to drive and my son graduating and hating the idea of Prom. That put my head back together and I am ready to face today.

Diane- I hate snow and cold weather too, and this winter has been beyond brutal. Wish I lived in the South!

Mary- Yes, be vigilant about ticks -- all ticks, not just deer ticks can carry Lyme and out tick-borne diseases.And it doesn't take 24 hours of attachment to be transferred, it can technically happen immediately. Lyme has been found in the saliva and mouth parts of ticks which can make transmission happens as soon as they get into your skin. The more I learn about ticks the more they freak me out!