My response:
First of all, you’re doing a great job of fending for yourself in a really REALLY challenging arena full of so many unknowns – BESIDES that you’re probably exhausted, feeling desperate and living in an unacceptable amount of pain with everything else that’s on your plate while you’re trying to move through this block. So, start out by honoring your warrior spirit and giving yourself credit for ‘keeping up’ in the face of this test.
Keep promoting yourself by speaking up and telling the truth. There is no better way to get your SOS message across than by continuing to call your doctor when you know you feel you’re suffering unnecessarily.
It’s not unusual to run up against a doctor’s reservations – they could be acting according to the oath they took to not harm their patients, and remember, they probably decided to be a doctor in the first place to help people.
Another thing to consider – they don’t want to be sued, so they proceed with caution sparked by justifiable fear.
If you have energy to do so, go deeper into the investigation by calling all over your area and asking other rheumatology clinics if they can help you. If you don’t have the energy, is there a family member or friend who could help you google possibilities and call around?
Maybe your present doctor has a referral for another rheumatologist you can seek out for a second opinion – doctors belong to networks.
What about your insurance company?
I know with Medicaid, I had a Care Coordinator assigned to my case. They might not announce that right up front and you have to dig that person up, but they ARE there for promoting your case and solving problems, like finding the right doctor for you.
Even at the County Hospital System, I eventually found out that they have Patient Advocates.
If you have private insurance, call and tell them what’s going on – everything you know about it, and what you don’t know, and what you need to find out ASAP. Most likely they will want to hear what you have to say because they won’t want to pay for whatever may be damaged should you go untreated – this is how they work. At least it will be on record that you banged on their door. At most, you will find an opening and further your investigation.
I’m only sharing with you what I had to learn to do for myself – I was where you’re at for 24 years worth of undiagnosed relapses that were treated with the wrong medications. That was only my initiation and once I was diagnosed with Relapsing Polychondritis, I had to learn how to work with and successfully promote myself through the medical system.
You have every right to knock on any and every door you can find.
Be professional, and firm, too. It’s like a job that you have now and you want excellent records (proof!) – take notes, write the time and date, and get the name of every single person you talk to. There is a chain of command and people have to answer for themselves all the way up through that organizational hierarchy.
And every time you run into a wall, ask that person who’s helping you to please direct you to someone who CAN help you, or someone who can find you someone who can help you – OR THEIR BOSS. Insurance companies are all set up for this – they HAVE TO BE PREPARED to handle cases just like yours.
You do your job and let them do their job to serve you.
I learned to be grateful for and trust the message behind the pain that was true to me and kicking my butt, begging for my full attention.
Pain is a SMART and true message to follow up on. If you wait and your inflammation is not arrested, you could incur irreversible damage.
I would never tell anyone to ‘trust me’ because you are your own best doctor and your best answers lie within, but I can share my true story that parallels yours.
I learned the hard way and lost body parts, and my hearing!
“There is a way through every block.” yb
Guruatma serves as a mentor for those who suffer from chronic or critical illness, as well as their family members. To inquire about or schedule a one-on-one session, click here:http://yogic-tools.com/services/contact-us/.
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Featured Image by Susan Plum – Naturaleza Oculta series/drawing 2