Tell me lies, tell me sweet little lies...

Those that can't do... rant.

rantingsofamadwomanblog.com...

[yogabonnie]

OH. OH. SORRY.... Now you are through the DENIAL stage!! ONWARD!!! I am always between a rock and a hard place with things like this. On one hand my father always told me, "From the Womb to the Tomb you rot with every breath you take." And my mother always said, "Everyday in every way, I'm getting better and better!" And I LOVED them both!

[Insight329 in reply to yogabonnie]

I'd never heard that saying of your father's before. That's a bit of dark humor (which I like). Your parents must have been quite something!

[SheffieldJane]

Oh sweetheart! How I can relate to what you say, this bump in the road is leading somewhere I promise you. Patience!

I love your railing and shaking your fist at the fates and the fact that you don’t realise how far you’ve travelled yet.

[Hidden in reply to SheffieldJane]

Thank you. I love that you love my "railing and shaking your fists at the fates." I also hope you are right about my not realising how far you’ve travelled yet! ; )

[HeronNS]

Reminds me of when I was struggling through my midlife crisis, having been a stay at home mother for about a decade, and trying to find some form of paid employment. I had an aging Library degree, so I used to joke, adding to the famous saying, "Those who can't do, teach, those who can neither do not teach become librarians, those who cannot do, nor teach, nor be librarians, sell encyclopedias". When I failed at the encyclopedia business as well I didn't know what to do, but eventually got a job shelving books in the public library, rapidly ascending the ranks to become a "readers' advisor" but never working again officially, nor paid at the level of, a librarian. I guess PMR is a bit like that. I think I'm still at the "shelving books" stage, but at least I'm mending!

[Rugger]

I am sure we don't have to tell you that this is all part of the grieving process that most of us have experienced, being diagnosed with one of these autoimmune diseases.

You are an intelligent and articulate woman and will get through this. You needed to see Dr H as part of the process. As yogabonnie says "Onward" now.

We are all here to support each other and your posts do just that for others.

Take care.

x

[Hidden in reply to Rugger]

Thank you, thank you, thank you. I so appreciate the acceptance and support.

[Hidden]

I neither surprised not shocked at your self revelation. But there is still the bottom line that you can say...once I reduce pred x will be better and one day I will feel better and gca will be in remission. You just have to be realistic about what is happening to your body and let your mind catch up after only 79 (?) Days.

I think many of us had mild euphoria at dx when pred worked followed by feeling terribly let down by our own bodies and the realisation that there is no quick fix.

Give yourself a break....keep ranting and hopefully you will start to feel less disappointed. 😎💣

[Hidden in reply to Hidden]

You are so right. There is a light at the end of the tunnel, I know there is... I just seem to be stuck in the station, banging my head against the doors of the derailed train! : 0

[Hidden in reply to Hidden]

Lol. Turn this moment into a sliding doors moment.

[Insight329]

Heavy sigh. I'm so sorry. How wonderful that would have been if you had gotten your wish. But alas..... As Bonnie pointed out, welcome to the first stage of grief. Unfortunately, some of the other stages aren't exactly a walk in the park, either.

grief.com/the-five-stages-o...

I don't think you realize it but you've become a 'fan favorite'. I'm sure that I'm not the only one that was checking this site to see how your appointment went. We love your writings: they are raw, introspective, and we see ourselves in them. We love your humor. We love that you take the time to illustrate your posts with such interesting pictures. You ARE an 'intelligent and articulate woman'. You ARE a 'sweetheart'. And you WILL get through this.

Don't beat yourself up too much. You just wanted something better for yourself. No foul in that. But now you know. REALLY KNOWING does change the game. And down the road you'll find that REALLY KNOWING is really a blessing. You don't want to live with uncertainty. Having multiple docs tell you different things. You don't want to be in pain, try a medicine chest of different meds only to find that nothing works with no clear answers. You got a clear answer -- not the one you wanted, but the truth. I think that's what we want out of our doctors. Just give us the truth. But knowing that's what we want and accepting it may not be easy, especially when their message wasn't what we wanted to hear.

Know we are here for you -- as you have been for us!

Gentle care the next few days!!! Very gentle care!

[Hidden in reply to Insight329]

I am honoured and deeply touched by your beautiful words... Thank you. Thank you so very much. The people and sometimes heartbreaking stories on this forum, have given me the strength and courage to look these hideous diseases, straight in the eye. I don't always get it right first time around, but I usually get there in the end. You are so right... "REALLY KNOWING does change the game." As a volunteer end of life companion (aka Soul Midwife) I am very familiar and most comfortable with (what they now say are 7 stages) of loss and grief. It is time to use this model to shine a light on my own loss... Namaste Insight 329, Namsate

[Insight329 in reply to Hidden]

ahhh...see. You can help teach us on grief. Be that beacon of light for us and yes, let it shine on you, too. You've been given a tremendous gift with words. And you've been put in a position where not much is known about these illnesses. My bet is that 1+1=2 here. You just need to find the forum for your message. This is a good start, but I see a bigger stage for you.

[Hidden in reply to Insight329]

Hmmmm? "From your mouth to God's ears," as my Mom used to say.

[NWFiona]

Love your honest, eloquent & well thought out rant! I'm sure it was cathartic just writing it down?! I really feel for you 😕 I had something very similar, but with a different problem! At least you do have it confirmed by the best person, even though it's not what you wanted to hear. All the best with your onward & upward journey & keep posting 😊X

[Hidden in reply to NWFiona]

Thank you. Yes... as I have ZERO energy to do much of anything else, my writing is cathartic. It's inconsequential, but I put my heart and soul into each piece. It's all I can give at the moment so I give it all. I feel amazingly cleansed after I write. Thank you for reading.

[Bj2016 in reply to Hidden]

Your writing is anything but inconsequential. There are few people who can put into words the way we feel, deep in the soul. We are blessed to have some of them on this forum, who make you feel "God, yes, that's it exactly!" Please, continue to share. You make more of a difference than you'll ever know.

[Hidden in reply to Bj2016]

Thank you so very much... what a lovely thing to say. If even ONE person can relate to my words and feel that they might closely represent their thoughts, feelings and emotions... I am happy.

[Pongo13]

Full of admiration of your way with words. I rant - but mostly verbal diarrhoea (my poor hub). Then I draw a line, pause and breathe and think "be kind to myself". You don't know me, but the uplift I get from your posts and others, helps me on a daily basis as I cope with this condition. Stay strong.

[Hidden in reply to Pongo13]

Wow. Thank you. The thought that I might mildly entertain someone, thrills me. The idea that my rants uplift and possibly help someone cope with this condition, blows my mind. Thank you.

[testadura]

I loved your blog.

I expect a miracle everyday...I expect to work a sixteen hour shift and not feel tired...I expect to be able to have a clean house and keep it up...I expect to eat what I damn well please and not experience repercusions like pain and fatigue...and most disappointing, I expected to see my rheumatologist and receive a diagnosis of PMR.

Well, lately my expectations haven't been met. I'm the living definition of insanity...repeating the same behavior over and over and expecting the result to be different!! In my defense (denial,) I have sort of cut down the number of hours I work, and when not working I do spend a lot of time in bed. Projects are not getting done around the house...oh, well. I'm pretty sure the chocolate cookies I ate tonight are not low carb, and I will feel them tomorrow!

I had my first visit with my rheumatologist on the January 16th...I'm still chewing and stewing on the results of the visit. I was told I do not have PMR, despite sudden onset bilateral shoulder and upper arm pain with immediate response to prednisone (no response to NSAIDS and narcotics,) for I am too young (59) to have PMR. (Pffft)

I was told, instead, I have seronegative RA. I'm not buying it (more denial???) I still believe I have PMR, but I have started Methotrexate and folate this week to treat for RA, and I will begin to slowly reduce prednisone in a month. Doc suggested to go down by 2.5mg and to hold for a month before reducing further. We'll just wait and see.

Oosh, what a divergent segue and rant!! I do understand your frustration, and I appreciate your ability to express yourself, your honesty, and your humor. Your reactions to the journey on this unchosen path are inspirational. Rant on, sister!