Showing posts with label self advocate. Show all posts
Showing posts with label self advocate. Show all posts

Wednesday, January 30, 2013

Sweet nothing.







Tonight's blog is inspired by the song "Sweet Nothing" by Calvin Harris with Florence Welch (of Florence & the Machine).

When my daughter and I were driving to/from Phoenix this song came on several times.  She sang it and was obviously touched by it.  To me it was a good song, but didn't really touch me.  It seemed to be about a one sided relationship which we've all been a part of at some point.  The yearning to be heard and understood.  Wanting to believe when someone tells us they care, but knowing those words are empty without action.

As I was driving to meet my honey for our Tuesday poker night the song came on again.  Suddenly mid song I realized this is what I'd like to scream at the medical community sometimes.  I feel like I'm Florence crying out to be heard, but getting lip service about what is in the future to give me relief in my Psoriasis and Psoriatic Arthritis.  I adore my Rheumatologist and he has done everything available to try to help me.  Please don't think I am referring to him in this feeling.  I am talking about the researchers, pharmaceutical companies, and health organizations that give us hope that feels so empty when suffering day in and day out after trying every ware they've sold me.

I look at my last 10 years of care, and the amount of money that has gone into trying to "cure" me is staggering.  A rough estimate of just my BIOLOGICAL medications since October of 2004 is over $400,000.  That doesn't include prescription pain meds, NSAIDs, DMARDs, topical steroids, inject able steroids, doctor visits, or holistic/naturalistic treatments.  I'm only referring to my treatments directly related to Psoriasis and Psoriatic Arthritis. I did have a little over 4 years I would be considered in remission, but here I am less than 10 years from diagnosis of PsA and I am in full blown unstoppable flare.  Lets call it a half million dollars and I am not cured.  I am not improved.  I am not functioning.  It feels like I've heard a whole lot of sweet nothings.

I pray constantly for myself and anyone who has these diseases that we do have hope in the future, but right now I feel like I'm screaming with a broken heart to someone who has empty promises.


P.S.  We've started a Facebook page for Sausage Toes and Scales!!  If you want to be kept up to date on what's going on come like us! Sausage Toes and Scales Facebook Fan Page

Thursday, August 16, 2012

Doctor, Doctor!!!

Today I went to see my favorite Rheumatologist in the whole world.  I asked him if I could use his name here and offered him the opportunity to take a gander at my little spot in cyberspace before agreeing or denying me use of his name.  He said "What are you going to say about me?".  I just raised my eyebrow and smiled.  He said "Sure, OK." and laughed at me. 

So let me introduce you to my Rheumatologist Dr. John Lavery.  If you are looking for a Rheumatologist you can find his info here.  I can't say enough good things about him and his practice. 

I'll begin my endorsement by telling you about how I found him.  I had been with my previous Rheumatologist for about 3 years.  We had been through the standard path of care that most Dr's follow for PA.  I was generally pleased with her level of care and her staff.  The problem arose when I started needing stronger pain meds.  I've been on pain meds for about 15 years now.  I've managed to stay on minimal dosage of narcotics for all this time by switching medications occasionally.  When one med stops working I go to another for 6 months or a year and then can go back to the original.  For me vicodin is my staple med.  Every few years I need a vicodin vacation and will switch to percocet for 6 months to a year.  Then back to minimum dose of vicodin.  At any rate my previous Dr had decided she was absolutely not doing any triple script prescriptions for anyone.  Now I understand this decision as a way to protect her practice from abuse and suspicion, but for me continually raising my dosage for vicodin is just not an option.  I am not going to be getting better, and  raising the dosage leads to becoming immune to the higher dosage and so on and so on.  Before long you are hooked on high dosage of vicodin and it's not effective as a pain diversion.  In fact it becomes necessary to function because you are hooked.  I called around to as many Rheumatologists as were in driving distance that were approved by my insurance.  I made appointments with 4 of them that were accepting new patients.  Dr. Lavery happened to be the first with an opening.  I was ready to pay to interview each of these Dr's.  I made it very clear I was making this appointment not for care, but to interview the Dr and get a feeling of how their practice is run.

I arrived at Dr. Lavery's office and explained again why I was there.  He sat down with me and I explained my reason for looking for a new Dr.  He understood my reasoning for wanting to maintain low dosage for pain meds.  He told me he was agreeable to narcotic medications as long as I was being a productive member of society and it continued help me live a functioning life rather than impede my ability to function.  We also discussed his willingness to try alternative therapies.  I'm not exactly a new age bare foot hippy, but I do believe that there are holistic and natural remedies and aids that many Dr's will outright dismiss because it's not the cutting edge of science or not a medication.  I decided before we were done that this was the Dr for me.  He didn't make me feel like I was pharmaceutical shopping because I wanted to discuss narcotics.  He didn't make me feel like an idiot because I was interested in alternative therapies.  He didn't minimize my illness because I was under 40.  The final thing that made me realize he was going to look out for my best interest was that when I went to pay for my visit he said there was no charge.   

Dr. Lavery and I have been in this Dr/patient relationship for about 3 years now.  I see him about every 3 months no matter what.  We talk about how I'm doing on whatever therapy I am on.  It is a discussion, not a dictation.  When I decided that Remicade was more of a hindrance to my health than a help to my arthritis, he supported my decision to stop it.  When I went through a phase of trying every vitamin suggested by every web site on PA he supported it and made suggestions on dosages.  When I'm at the point that there really isn't anything more he can do at this time he's honest about that and focuses on making more comfortable rather than taking it as a personal failure.

I guess the reason for today's blog is to highlight the importance of that Dr/patient relationship.  Take the time to find the right Dr for you.  I know how expensive it is to pay co-pays, but it's worth every penny to pay to interview your Dr BEFORE you receive care.  If you are with the wrong Dr for you, you are wasting money every time you go to them because you are not getting the best care for you.  Also understand that your Dr works for you, not the other way around.  Yes they are the expert, but you are paying them for a service.  If you are not understanding what's going on with your care, are not getting the time you need to discuss options, or are not being taken seriously you are not with the right Dr for you.  You can fire your Dr!

Finally if Dr. Lavery or his staff ever stumble across this, THANK YOU!  Thank you for being an amazing group of people and for providing awesome care for me every time.