Some Downs Some Ups…

Well a bunch of people have been asking me how I have gone with the plastic surgeon after all those scans and tests and so on a month ago, after that great meeting with him and how he was going to help me move forward and connect me with a great physician he knows, and so on and so on …

Well I have heard NOTHING for the month, so on Sunday night I sent him a short friendly reminder that I am kinda hoping to hear form him some time and asking what my results were. Well he wrote back first thing Monday morning which was great, and apologised for not getting back to me earlier, (it sounds like he’d completely forgotten about me) and this is what he said….

 I have been through the scan in detail with the radiologists and there is a minute midline hernia with a small knuckle of fat protruding. Having spoken to my colleagues about your unique situation, there is general consensus that any further surgery would be of no benefit whatsoever and the pain that you are experiencing is probably not related to the hernia at all. I’m sorry

Oh …. thanks for that, … so; bad luck, I’ll just take my pain and go home and just live with it forever then, … sure! Silly me for thinking that something is wrong! My GP thought that I was being a little hard on the Rheumatologist last August when she diagnosed me and I asked when to make my next appointment and she said “don’t come back, there is nothing we can do for you”… I said that basically she hadsent me home to rot on the couch”

But this is the thing. When you turn someone away, who is in a incredible amount of life changing pain and has just been diagnosed with a condition that is permanent, you don’t send them home with nothing! You don’t say (or imply) that “it’s got nothing to do with me” …

It isn’t about blame, and no one is blaming them for my condition, but gee, just a LITTLE bit of help would be great! I don’t think that I was harsh on the Rheumatologist at all, and quite frankly after all his concern and care and promises, I feel just as dumped and badly treated by the plastic surgeon as I was about the Rheumatologist! (he just beat around the bush about it first!)

Not to mention that I am the one who has been saying that I am in pain and pointing to EXACTLY where the pain is, and moved heaven and earth for eighteen months to have said pain spot examined, and that examination and poking of prodding of the exact spot hurt a LOT and continued to hurt for the next few days… so why on earth is it that it is unlikely to be the cause of my pain????? How is it that I don’t know what I am talking about??

GRRRRRRR….. I am soooo angry! It is all such a complete waste of my precious, limited energy and pain levels!!

That is the end of rant and I will put it down to yet another asshole on the list (sorry)!!!

Then the good news: I have a friend who has a friend who is an AMAZING Gynae and she specialises in oncology and tumours and people with really weird conditions, and she was sure that this friend would be REALLY interested in me and may have some really good ideas and ways to help me. And seeing as the Gynae that I saw who is covering my Estrogen supplements etc was a bit dithery for my comfort zone and didn’t seem to be able to make up his mind on a few things, I think that finding a new one is a VERY good idea, but even more so someone who is REALLY talented and interested in crazy people like me.

I do know that Oncology is her specialty and she isn’t taking on any other kind of new patients, but it was worth a try. So yesterday morning I phoned and the receptionist was one of those wonderful women in this world who make you feel comfortable from the first second, and she made it soooo easy for me to babble my stupid story which is so hard to explain in one sentence and make sense! Her opening question was: “are you an Oncology or Transplant patient?” …. um neither! (and transplant what exactly and to where???), I was completely thrown because I am pretty sure that I am neither option A nor B, and yet those were my only two choices if I was to get in! But she was wonderful, and started to refer me to someone else, but then I did my little explanation, and honestly, she could have just said sorry no, but she was sooo sweet, took all my details and said she would get back to me.

Then this morning I got a call back from her, apologising for taking so long, and saying that the Dr would be VERY interested in seeing me. I can’t remember her exact wording, but I felt like I had just passed a very difficult test, that I would be MOST welcome there, and she felt bad that the next appointment isn’t available for three weeks. But I am used to waiting and don’t expect to jump queues, (ESPECIALLY if her other patients are Oncology patients), but I feel REALLY good about this and I hope I am not going to get my hopes dashed again!

So bad news, but hopefully some good news to come 🙂 … and now I just have to pop in to Dr Asshole’s office and collect all my results to take along with me 🙂

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4 thoughts on “Some Downs Some Ups…

  1. Hope springs eternal? I went through so many doctors in 46 years to find 1 in 2006 who actually got it and he is now retiring. In the 10 years since diagnosis there have been many Dr Assholes and a total loss of faith in the system . I believe I will just let myself be shuffled to whoever my guy leaves his patients to and I will make the best of it. It seems EDS patients struggle for years to get a proper diagnosis all just to be properly ignored.

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    1. Oh no I am so sad that he is retiring !! Have you talked with him about your future as I think that he has an opportunity to ass you on to someone who will care for you as he did! It’s a tough one. I am praying that once I get this kind of covered, I can get a whole bunch of stuff in writing so that when he or she retires or I move away or whatever… I never want to start from scratch ever again!

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      1. I see him next month and will definitely address the question of who he plans to leave me with. He is working just a few days each week and maybe he will continue that for awhile? He diagnosed me and has done his best to look after me but I know he must be tired of dealing with people in pain and knowing there really is only so much that can be done. I hope he does what is right for him and I hope he finds enjoyment in retirement because he has earned it♡ It is just so hard when we have so few people in our lives who understand EDS and losing just one of those who actually gets it is a big deal.

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