Followup appointments

[harrigan]

Wednesday's is going to be a busy day.  I'm due back at the rheumy to review progress after 6 weeks of Plaquenil.  I'm still having some sharp pains near my ear on the right side of my face - would this be something to bring up with him or do I need to tell my GP for an ENT referral?  I'm also itching like crazy on my legs still - is the rheumy the right person to discuss this with?  He is quite distant and grumpy and I don't want to be left feeling silly.


From there I have to collect my daughter and get to Alder Hey for her check-up.  This will be the 1st time we have seen her Dr since my diagnosis and I'm really keen to see if he thinks there is a link between our AI issues.  It seems too much of a coincidence for us both to have an AI disease attacking moisture producing glands / tissues.  Feeling a bit anxious about it all, especially as parking at the 2 hospitals is so difficult and stressful - good job I'm not having my blood pressure taken at the same time too!!  xx Ailsa

[Dolly Dimples]

 
   Hi Ailsa,  I certainly would mention the ear pain to the RHeumy, never mind his grumpiness, it's his job!!
 
after all they are supposed to be more knowlegable about SS than any other Consultant! but even if it's nothing to do with SS, don't worry about that!
   
Does he not know about your itchy legs too,? if not  I'd tell him ..   Once you have a Doc in front of you ...fire away... you may never get another chance!

     I sincerely hope all is good news with your Daughter too. it is common for Al issues to run in families   (i know about that)
It will be a little hectic for you, but at least you should hopefully get all your answer's in one day..  You can spend the next day in bed! lol
                                               wishing you both well, Dolly x
   
     
                               

[Chickpea]

Hi Ailsa

Wednesday certainly sounds like a stressful day.  What a pity you won't be able to have our own special Wednesday McH there with you to lighten the load!

Have you prepared a list of issues you want to discuss with the rheumy?  I've found it useful to go through my symptom diary and write an update under different headings for symptoms or meds or legs/arms/eyes etc.  Just a few key words for each one to prompt my memory.  So under 'legs' you could include 'itchy' as well as your usual symptoms, and maybe something about frequency or time of day.

Dolly's right that you should mention everything to him because he's your primary doctor and he'll refer you to other people.  Referrals from consultants seem to take priority over those from GPs in my experience. 

I know it sounds a bit sneaky but you might like to try something that's worked well for me with grumpy doctors:  I always thank them profusely for their help; tell them what a difference a certain med they prescribed made; or that I followed their advice about something.  However grumpy the man is, he did diagnose you pretty quickly and also got you started on Plaquenil ... so you have that to thank him for!

Hope your daughter's appointment goes well too.  Is her condition stabilised or actually improving?  It would be great if you could get more info about AIs running in families because anecdotal evidence here seems to point towards all sorts of interesting connections.

Parking ... No chance of getting a Blue Badge?  Probably not by Wednesday, if at all!  But it's worth thinking about if walking gets more difficult.  Mine has transformed my life.  Is there a Park and Ride scheme that serves the hospitals?

Let us know how both appointments go.

Thinking about you - Chickpea

[missyb]

Definitely bring up the ear pain, it could be trigeminal neuralgia which can be associated w/ sjs.
Ok, here's what I do at any follow up type of appt . Think of what you want to ask, you may want to write it down to help you remember. I don't generally ask more than 3 questions at a visit if even that, and after I do as suggested above, expressing my gratitude for what has been done for me I will say "May I ask you about 3 things today?"
Ok, the reason I do this upfront with a number is b/c this way the guy knows I am only asking 3 things, and I will not site there and go on endlessly asking a million different things. Usually after I ask the first 2 things, they will say "Ok so what was the 3rd thing you wanted to know?" I think it's easier for them when they know the beginning middle and end of what will be expected. If you do have more pressing issues you can always call the day after.

[jonnell]

Hi Alisa,  Thinking of you today its Wednesday, hope everything works out for you and your daughter.    Hugs and Kisses  Jonnell and Jenna

[KYMOM]

Alisa, Hope all is well.  Let us know how it went. Roxanne

[wednesday mc haggis]

ailsa

i hope all goes well today! grumpy ?? must go with the rheumky territoru , high percentage of them seem to be that way and make you feel silly ggrrrrrrrrrr , i usually feel better on wednesdays lol, possibly we should all call ourselves days of the week for luck lol.

   thinking of you, thnakyou so much for your email, while youve got all this on your plate today, be intrested to hear what your daughters doc says about the correlation between both your AI issues, hopefully you get some kind of answer to that.

  let us know how its going, sending you some energy to get through it, and he is having a good grumpy free day

T x

[harrigan]

Thanks everyone - appointments were okish for me, good for Katharine.  He doesn't want to see her till after exams now, which is great, and blood tests all looking good.  I asked about links between our AI issues and he said they tend to run in families - then warned her against marrying anyone with AI issues!

I turned into a scatterbrained mute when I got in to see rheumy.  Told him my hands still hurt a lot.  He looked at them briefly and said it looks like tendonitis, common with SS and to come back tomorrow for an injection.  He said to see him again in 4 weeks and he will write to my GP with change of meds for eyes and something for dry mouth - don't know what!  I'd meant to ask about itchy skin and face pain too but all I could think about was getting out!

I have to go back to Gp tomorrow too to get prescription for plaquenil and amatriptyline, so maybe I can ask him.  He is more approachable.  Isn't it hard that when we are tired and sore, we have to put more time pressure on visiting all these drs?!!

[Chickpea]

Hi Ailsa

Good to chat earlier and hear how the appointments went.  Did he have any thoughts on Katharine's reaction to CellCept, timing of tablets etc?

Sorry that you didn't really get listened to by your rheumy.  I'm not sure they know an awful lot about joint issues with SjS, but just analyse them in relation to RA.  What sort of injection is he going to give you?  Steroids?  Will you get a chance to speak to him again then or just see the nurse?

It's good that he's scheduled another appointment for 4 weeks time.  Maybe you could start another sheet of notes for that visit - including itchy skin and face pain - so that you avoid the 'scatterbrained' bit you mentioned!  You could always email him ahead of time and tell him that you'd like to raise these issues because you forgot to mention them today.  Or maybe your GP could write to him so that the letter's in your notes?

You're quite right about visits to doctors.  Sometimes I just want to say that I'm not well enough to see a doctor!  It takes more energy than I've got, and sometimes the whole week is taken up with appointments, preparation for appointments, recovery from appointments ....!

Thinking of you - Chickpea

[KYMOM]

Good news for Katherine. Yeah!  Sorry to hear about the Rheumy.  I did not get much out of my two visits to my Rheumy and probably will not go back.  Don't know whether I should look for another or not. 
It is hard when you get to a Doc and your mind goes blank.  I have seen several posts on this site about writing symptom journals or just making a list so you will not forget when you get to the Doc.
Hope tomorrow goes well for you.  Will be thinking about you.
Roxanne

[harrigan]

Well, after getting all psyched up for injection, rushing to get to the hospital after work, resorting to stalking people in the car park to find a space etc, it turned out the Rheumy had been 'called away', nurses couldn't do it because of where it was to be (don't know why) and the Registrar who could do it was busy coping with overflowing clinic!  So I'll get an appointment in the post.

I then had a GP appointment, which was much better.  The 1st thing he said was 'Well, the plaquenil's not working yet!' as my ESR is back up to 113, higher than ever.  In a way it was reassuring as I've been feeling bad the past few weeks, full of aches and pains, so it was a bit of a confirmation that I'm not turning into a hypochondriac!  He  wants to do more blood tests next week.

Thankyou for asking - will let you know if there is something to report!! xx Ailsa

[wednesday mc haggis]

aisla

so sorry you had all that running about for nothing, little enough spoons going without wasting them.

  sorry also your ESR is up, but as we read here does take time and hopefully it will come down soon.seems like a game of snakes and ladders SJS, wishing you more ladders than snakes *hug*

T x

 

[Linda196]

I can see that you've fully adopted "The Spoon Theory" McH, I particularly like the way it sounds when you say "I don't have the spoons for it"..... for those of us who know the theory, it says it all, and for those who don't and ask you what the dickens you mean, you can educate them a bit. Win/win.

My personal application of TST comes in the form of the small sterling presentation spoon my nursing school gave me, I keep it handy as a reminder not only of how precious all my "spoons" are, but of the joy it gave me to use the silver spoons (to be less poetic, the adrenalin fueled energy bursts from nowhere in a crisis) of nursing for so many years.

[wednesday mc haggis]

Linda

i have indeed lol, i love that theory , when i hit the wall in the evening , i say to my partner and kids, right mums ran out of spoons and they know thats it ,i have to lie on sofa.helps the kids understand it too, theyve read the spoons theory and they now understand when i say "i aint got the spoons for it " they seem to understand better than adults, strangely.

lovely story about the nursing spoon, and how i remember those adrenalin rushes well , even in the dead of night when you felt you was going to slide down the wall at 5 am, eemrgency buzzer went off you were there quicker than the road runner lol

  T x