Thursday, September 10, 2015

Interesting How Frustration Brings on the URGE to Blog.

I just got off the telephone with the Mayo Clinic.  What is wrong with our Medical care system???   I know I should be grateful that I have the means/insurance to go anywhere for care but PULEASE..can we at least be clear about procedures in writing?

I am sure a back-up and fill in is required here.

Since last May the pain cycle has just been one continuous pain in my backside.  lymph swelling, pain moves fro hands, the neck, to shoulder, to stomach, to hips, to legs and even my brain at time (if my grouchy factor is anything to go on).  My GP has decided the prognosis is Mastocytosis.  Basically that means I am allergic to myself :)  well really all kinds of things.  Apparently how this condition works is that my bone marrow makes too many mast cells.  These guys hang around on the walls of my veins waiting to be called into action and then go on a kamakaze mission to take out whatever intruder shows up in my body.  The problem is because there are so many whenever I get the tiniest twinge of an intruder they go to work.

Because there are so many of these mast cells the bomb that goes off is bigger than it should be hence all of my lymp glands and stuff go into overdrive.  When the mast cells die the do something called degranulation.  This relases several substances one of which is histamine.  The rest of them are apparently unknown but they know there are a lot of those others.  The treatment is anti-histamine.  The problem is...guess what Tina is allergic to?  yup..Benadryl an anti-histamine.  There are others but I am a tad scared to try them.  My daughter takes one-I tried it.  My reaction was not as bad as Benadryl but it was a smaller version (twitchy like I had had 5-6 coffees and nerve spasms).  Additionally It didn't really cut the swellng/pain any.   I opted not to repeat it.  My GP has now suggested I try cromolyn.  This one is apparently a mast cell stabalizer. She called in a prescription and that is the plan for tomorrow's pharmacological experiment.  The pharmacy did not keep it in stock thus I hae to wait two days to get it.

The GP also suggested  I go to the Mayo Clinic where they are well versed in treating this problem. Now we get to the fun part.  She suggested I call and make an appointment for myself.   So I called..
Although their webpage says a patient does not need a doctor referral when you call to make an appointment guess what they require?  Of course..a referral.  So then I had to wait a week (because my doctor is good and gets you in) to talk to my doctor and then another week for her to get all of her paperwork together (it is approx 3 inches thick).  She then handed it back to me to send off.  Today I called to get specific delivery instructions and the woman on the phone said,  "oh your doctor has got to send the paperwork."  I kind of lost it in frustration and asked her what difference it makes...she provided no reponse just repeated.  The doctor has got to send it.  I said I have the referral..i have my records just tell me where to send it.  The woman repeated, "the doctor has got to send it....gahhhhhh. Is she really worried that I am some sort of a psycho record maker-upper patient?

Dear Mayo Clinic,

What the heck is your problem?  Your webpage clearly states that patients do not need a referral.  Is this a lie? When a patient is seeking treatment do you really think they feel good enough to mess with your clearly conflicting chain of command demands?  Can you please put a clear set of instructions on your webpage or at least talk to your PR people and make sure they understand that the medical care system is not patient driven and never will be easy, clear cut or straight forward?



A patient who has been in pain now for over a year, has been to see a crap ton of doctors and been poked a crap ton more.  She is not looking forward to more and is therefore not faking.

oh.. and she is at the end of her rope of patience

UPDATE on Weightloss:

Oh hey-I am now down to 192.  My ticker is broken but slowy losing weight.  Apparently weight loss is a side effect of this stuff.  Ha..first a gain because I thought it was the lapband giving me problems and now that I have a partial fill again all of the stomach junk does indeed make me want to give up food for good.  Can someone live on fluids?  I am ready to try.

I had a second visit with the endocrinologist.  I have decided he is rather crap.  He added another anti-seizure drug to the speed that I was taking.  I took it for approx. 2 days.  Prozac was a better weight loss drug that this kitchen lab mix.  Perhaps it is because I have so much else going on but I really didn't need to add those two crazy things to this mess that is my health.

Additionally I have decided I really don't like the guy.  Sure I am willing to put up with that if he helps but I have had it up to my eyeballs with specialists that are so busy they cannot get you in in a reasonable amount of itme (6 months between visits when he said I should come in every 3) and then when I am in the office he doesn't care if I might have conflicting health issues.  he wanted to hand out another set of drugs and send me on my way.  No thanks..I still miss my original lapband guy..sniff sniff.


Sara said...

Hope you get situated with Mayo - and they may be able to straighten out the "conflicting" health issue so you are on a treatment regimen that doesn't fight against itself. How frustrating for you! And you are smart to not trust a doctor that just prescribes more and more drugs.

Amy W. said...

I can't imagine how you must be physicall feeling (let alone mentally) bc whenever one of my lymph nodes gets just a little feels super sore! Keep us posted and I hope this gets worked out fast.