Just don't know where to start

Hi everyone…I’ve been meaning to post this for a while but have just not had the energy. I feel like things are piling up on me and I honestly am about to break. I have an AMAZING support system at home (hubby & my boys) but I feel like all I do lately is complain and I fear they are getting tired of hearing it.

I TRY to talk to my Mom, but she is SO narcissistic that she always turns the conversation back toward her and what she’s going through! And every time a new symptom develops…she has the same thing!!! I don’t want her pitty… I just want/need to express myself!!

So many things are happening to me and I feel like I am on this autoimmune journey ALONE (DR wise). I still haven’t heard from my potential new rheumy. I have an appt with my original rheumy Monday 3/13, I have an appt with my PCP tomorrow. I am hoping she (my PCP) will listen to me and hear my concerns & HOPEFULLY order an MRI at least!! And I plan on getting her opinion on whether I should keep my appt with my original rheumy on 3/13. I don’t think it’s wise to start something with him (original rheumy) if I don’t intend to finish it. BUT…if the potential new rheumy turns me down, I have no where else to go but back to my original rhuemy.

And…to top it all off, I think I’m empty nesting!!! Even tho my boys are not moving out. My oldest son Lane, graduated HS last year…turns 20 in Sept. My youngest son Lance graduates HS in May and turns 18 in June. They don’t need me anymore!! They are ALL about their Dad! I know my hubby & boys love me…but sometimes I feel lonely when I am not alone in the house!!

Sorry this turned into a novel…I just feel so scared right now and NOTHING seems to be going right for me!!
Thanks for reading if you got this far!
Hope everyone has a good night!!


It does all sound quite overwhelming… I read a book recently where the author kept quoting ‘You can eat an elephant one bite at a time’ ! I like that idea (except I’m vegetarian- lol !!). But you get the idea- just try to tackle one thing at a time, and don’t look at the big picture if you can.
Sounds a good idea to keep the original rheumy on board for now in case the new one doesn’t work out. You might not be able to start any new treatment for now until you’ve had your surgery anyway? An MRI doesn’t sound unreasonable given your new symptoms- hopefully your doctor will agree on that.
As for the unsympathetic mum- I get that! My Mum isn’t unsympathetic, but she is fitter and healthier than me, and has way more energy, so she wouldn’t get a lot of my symptoms at all! So I don’t bother to mention anything. We went for a bit of a hike recently- I was wiped out and in pain when I got home, even though only a few months ago I’d have been fine, so sat down for the rest of the day- she went home and did a load of cleaning!!
And the empty nesting… my two boys are nearly 18 and 16. As I’m UK we have a different schooling system, so they’re both at crunch ages. The 16 year old wants to join the army (in September!), but thankfully - for us- he had childhood asthma so has to wait a few years to make sure he’s completely grown out of it. We have to help him decide what to do school-wise now. My eldest has just started driving, so sleepness nights while he’s out, which he does quite a lot, if not he’s hidden away upstairs computer gaming! He’s set his heart on getting into a program with an international company, but won’t look at anything else ‘in case’… when the boys are home I feel like I’m constantly nagging them to do revision for their summer exams- that and cooking seems to be all I can do now, so I feel almost redundant too!
You must be proud of your boys, and at least it’s nice for your hubby to get to spend time with them now, I guess you probably did your work for them when they were little. I have a lovely dog, and she’s still ‘Mummy’s girl’ , so some-one needs me!
Thinking of you, and glad that you can sound off on here!

Ugh, Limarie. And not even mentioning sitting with a gall bladder on the verge waiting for surgery.
Sometimes it all feels like far too much, doesn’t it? Part of it is the uncertainty, I think. You could deal with a lot of it if some of it would just fall into place, especially like discovering that your PCP actually listens and takes some action, and getting yourself “in” with a new rheumatologist. Then the other stuff might be a bit more bearable.
Sometimes life feels chaotic, doesn’t it, just when you need some stability and predictability.
Hang in there: this is a great place to vent. Things will fall into place eventually, even if it doesn’t feel like it right now.

Thanks you both sooooo much for the replies! It really means a lot that you both took time out of your busy lives for me! :blush:

I had a pretty good appt with my PCP today! I am waiting on a call from her nurses for my Neurology consult!! She would have ordered the MRI herself but she is certain he will do that plus more, and I am just fine with that!! The down side is, the only Neuro in town is the same one I saw back in 2005 when I suddenly began having Grand Mal seizures out of the blue. He was old & cranky back then…I can just imagine what his bedside manner is like today???

She advised me to just cancel my appt with my original rheumy but not to burn my bridges. I am also starting physical therapy for my neck pain/vertigo next week.

I actually don’t feel so alone in this autoimmune journey anymore. Even tho my PCP admittedly has no idea how to treat SJS…but she DOES know EXACTLY how to treat me!!!

Thanks so much again!!
Have a great evening!!


Glad that you’re happy with the plan; hope that the Neuro has mellowed with age…!

Thanks…and me too!! lol

You’re welcome! You had a good and uneventful :wink: weekend too. No doubt you are counting the days!