I Will Survive

Gloria always knew how to help me get my head on straight!

Today, I had the appointment with my rheumatologist.

Much as I suspected, with everything still so much up in the air for me, there isn't much she can do for me.

All of the remaining aggressive drugs that I have not used for Lupus/RA yet, have potentially serious or deadly side effects for someone with MS.  So, until I have the MRI in November under sedation, and the MS question is completely confirmed or denied, she did not want to give me anything aggressive.

However, she did put me on what used to be one of the only disease modifying anti-rheumatic drugs,  plaquenil.  You can read more about it here: Plaquenil WebMD, if you wish.  The thing with this drug is that it doesn't usually start to work until after you are on it for 3 months, but at least I know it is safe, and it does usually help.  It has a proven track record with Lupus and RA.

The doc also renewed my pain meds, and increased my methotrexate, which you can see more about here: Methotrexate (Anti-Rheumatic) WebMD.  Doc also suggested doing a short taper/burst of prednisone to help with my symptoms occurring now.  Both of us want to avoid me being on the prednisone all the time, as it is so damaging, even with all it can help with.

I kind of figured that this is what I have to for now.  I will survive.  I will cope until November, and then afterward, we will have more information with which to move forward.

As for the facial tingling, numbing and pain, it could be three things.  The Lupus/RA, MS (multiple sclerosis), or the brain tumor. 

Hubby was VERY vocal during the appointment. 

On the one hand, this is good.  The doc can see that he is caring and committed to helping me cope with my disease and what not.

On the other hand, when he was making me out to an overtired, cranky uber-bitch, that he wanted a magic pill to make 'it stop', I was not so amused.

I jumped to my defense and made it clear that some days (and not all) I get cranky and snap-ish after trying to cope with pain all day (and I always apologize!).  The doc gave me a knowing smile, and stated how clearly 'normal' that is for anyone dealing with the diseases and the symptoms on my plate.

Then, Hubby basically demanded, 'How do we stop it?', and I shaking my head sadly, said to the doc, 'He is still in a fantasy land that there is a cure.', to which she again, gave me a wonderfully sympathetic smile (you know the kind ladies, the 'poor you, I have one of those at home too' that you get when your kid is throwing a tantrum), and told Hubby, 'There is no answer to that.' 

Did he hear that?  I mean REALLY hear that, understand it, process it?  I doubt it.  Ugh.  Men. 

He wants it 'fixed'.  Unfortunately, my immune system is irretrievably broken.  This is a whole body system, brain, blood, organs, tissue, and muscle, and it doesn't work right.  It recognizes itself as the enemy and is constantly on the attack.

No 'off' switch medicine has been found.  The only meds available are those that can shut off parts of the inflammation process, or those, like chemotherapy, suppress the immune system responseas a whole. 

That's it.  No other solutions at this time.  No magic pill.  None even on the horizon yet. 

Anyhow, I am okay.  And, I will survive.  And, I will try to keep smiling while doing it!

I am not mad at Hubby... he was trying to help! (hope it gave you all a chuckle, too)

be well,
Dawn

ps... If Hubby wants bitchy I can order some of that up, like this graphic says...LOL

Tags: lupus, plaquenil, methotrexate, multiple sclerosis, brain tumor, rheumatologist, doctor, husband