Was "WWYD - Health". Now, it's "Uh oh! - Health AND Work!"

[bsmcneil]

You may (or may not) have seen my previous thread about a health challenge that won't abate ... and no one seems to care. I can go over it again - but - yeesh.

I just found out that I tested positive on the ANA antibodies test (likely meaning autoimmune or cancer). It looks like a similar Thyroid antibodies test is positive. I have a MRI next week about a mass that seems to be bothering me (pretty badly). Terrible numbers (kidneys, livers, lung function). Majorly high BP (and pitting edema - which made me check my BP around ankles and it's stroke level). Had a couple frustrating dr visits this week. People see weird things but never follow-up. Pulmonologist was like, "How are they treating your .... [some word I never heard of]?" I mentioned no one had told me about it, let alone treated it - but it was part of the endoscopy I had in early December and when I reached out (once in Dec and once in Jan), I was told they were too backed up and would get back to me.

All of that already felt hard enough. But I felt like we could hopefully figure this out in the next 6 months (which would make a year of issues), as September (6 months) was when my 2-year job program would end.

Turns out, that may nooooooot be the case. I could lose my job and insurance as soon as March 31. Maybe May 31st or June 30. Definitely not Sept 30 as we were told.

Is there a way I can impress upon the doctors how important it is that we test fast? My MRI was originally not scheduled for 3 months (despite there being a mass). I got it bumped up 6 weeks. Cardiologist and another specialist cannot see me until JUNE/JULY! I have no idea what to do. No backup/safety net, no family. Nothing. I don't know. My only two hopes were (a) find it fast and get treated before my job ended in September. or ... (b) morbidly ... die while I'm still working to pass along the life insurance. I am just at a loss.

 

[LoveDaisy]

I am so sorry to hear you are going through this. As someone who went to a lot of doctors over a three year period before being diagnosed with cancer I know how frustrating it can be. Do you one doctor (general physician type) overseeing and reviewing all tests and helping you to schedule these appointments and ensuring things are being followed up on? If you do I would talk to this doctor and explain your insurance/job situation and see if they can help. Unfortunately if your case is like me the delays are due to insurance in there is an order they make you go through and things they make you do before you can get the tests.

If you do not have one doctor overseeing your care I recommend you start there as they will be the key to moving everything.

Do you have a plan for insurance if treatment is needed? My treatment lasted 8 months after I was diagnosed, but I know people who their treatment was longer. Have you talked to your doctor about this being a preexisting diagnosis if you have to change insurance and you are diagnosed now and what that means?

I work for an association that does research for insurance companies and knowing how they work and the process I still found the whole thing overwhelming.

I wish you all the best, i am hoping for a positive outcome for you! Happy to chat if you want to talk about some more. No one should deal with this alone.

 

[Rogue1677x]

I'm so sorry to hear what you are going through. I don't know if it will help calling the specialists offices and explaining about the job loss and insurance issue that is coming sooner than later.

I, myself just got the news on Monday that I've got a brain tumor (years ago other neuros told me I had a benign tumor in the back of my brain, this is in the front). The doctor was quite sad delivering the news to me, showed me the images and gave me a hug. Now I'm impatiently waiting for a call from neurosurgery. Until then, I'm calling this thing in my head "Voldemort"

 

[flyingdumbo127]

Prayers and a caring hug to all! I am currently dealing with a frustrating medical situation myself of red tape. It is so sad that it isn't easy to get needed quality and kind care

 

[mommasita]

Oh @bsmcneil , that is incredible. I would just keep trying to press on with them. Persistence may just pay off. I can’t even imagine that. I’m so sorry you have double worries. Love and prayers to you.

 

[mommasita]

I'm so sorry to hear what you are going through. I don't know if it will help calling the specialists offices and explaining about the job loss and insurance issue that is coming sooner than later.

I, myself just got the news on Monday that I've got a brain tumor (years ago other neuros told me I had a benign tumor in the back of my brain, this is in the front). The doctor was quite sad delivering the news to me, showed me the images and gave me a hug. Now I'm impatiently waiting for a call from neurosurgery. Until then, I'm calling this thing in my head "Voldemort"

I’m so sorry you got that news I hope you get the call soon, and it goes well. I can imagine you are a wreck. Neurosurgeory can do that, never mind the knowing, the waiting. I do love sense of humour

PLEASE, please let us know how you are doing.

 

[Rogue1677x]

I’m so sorry you got that news I hope you get the call soon, and it goes well. I can imagine you are a wreck. Neurosurgeory can do that, never mind the knowing, the waiting. I do love sense of humour

PLEASE, please let us know how you are doing.

Thank you! They are moving fast on this, which is great news. The neurosurgeon I spoke with today has ordered new scans, I'm sending a disc with scans of my brain from years ago and his office is setting me up with additional testing.

He reassured me about the location of the tumor, that it's on the smaller size and the surgery itself is one they do several times a week. He laughed when I told him that maybe this explains why I feel like I'm turning stupid...