Tuesday, August 7, 2007

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

29 comments:

mleighin21st said...

Dear Dawn,
   I am so sorry that there isn't a magic pill for you.  You are one of the bravest, most loving people I have ever had the priviledge(sp) of meeting.  Hopefully the prednisone will give you some temporary respite.  
  As for you husband-PHFFFT on his temper tantrum.  I'm sure that the love and frustration he feels is just manifesting in a not so pleasant form.  
  Please know that I keep You in my thoughts and prayers.  
                        {{{{{HUGS}}}}}  Leigh


       

astoriasand said...

Haaaa exuse me Dawn,but I had to rofpmsl at the last graphic especially the gun Haaaaaaaaaa .Yes as you said not a truer word spoken at times MEN in big blocks LOL!!!!BANG BANG Haaaaa. I do hope you have a better Wednesday and I think you have every right to be as cranky as you wish any day of the week.Tell him to come live with me a while and I keep pretty good health for my age, Thankyou to the good Lord.He will soon know what cranky is, living with MOTHERHEN for just one day or maybe an hour haaaa.LOL!! He will think his day is done Haaaaaaa.Take Care prayers being said for you and yours everyday.I hope you have a more pleasant Wednesday and I do wish I hada magic wand I could cure you with.God Bless Kath
astoriasand http://journals.aol.co.uk/astoriasand/MYSIMPLERHYMES

toonguykc said...

I think it really is a "male" thing to want a clear plan of action..."how do we make this RIGHT??!!".  We're just like that, Dawn.  Forgive us for our lousy chromosomes! LOL  We want everything fixed and as soon as possible...and that is almost never possible.  I'm guilty too.  

Sending you some good vibes!

xxxx
Russ

mleighin21st said...

WOW!!!  We were commenting on each other at the same time.  How cool is that?  Thanks for being there.  And for the record, that's mutual tears.  
                      {{{HUGS}}}   Leigh

   

tlgf1968 said...

would u like some ammo queen uber? :)  my thoughts are with you always ... <she sighs as she shakes her head, "men ... ">

jckfrstross said...

[[[[[[[[[[[[[[[[[[[[[[[[[[[[[Dawm}}}}}}}}}}}}}}}}}}}}}}


Deb

psychfun said...

Men always want to fix everything...the he men...superheros....they can't stand when they can't fix something...makes them feel weak or unsuccessful etc. My dad is the same way when my mom or any of his kids are in pain. I think that is why they always say "Your fine" because they want to believe you are rather than something serious they know they have no control over. At least it means they care...they do have a heart & are not the grinch then! :-)

jibaro6543 said...

I so hope that whatever the doc has given you will help you at least deal better with the pain until you can have the MRI.....keeping positive thoughts going your way...
-Ellie

ladymagnolia1963 said...

Hi Dawn Ü

My name is Donna and I am out and about reading journals and trying to get to know others out here in J-Land Ü. I'm glad I stopped in too read your journal and say hello. It sounds like you are going through so much right now bless your heart! All I know to do is listen and pray for you. Please come by sometime and say hello. If it's all right with you I'd like to add your journal to my alerts.

Blessings,
Donna aka LadyMagnolia1963

eml625 said...

MEN ! You can live with 'em you can't live without 'em, well....that's the saying anyway !
Big hugs and hoping for a painfree day!
Ellen

sdoscher458 said...

(((Dawn))) you have so much on your plate. If I had one wish that could be granted it would be for every terrible disease on this planet to be cured..a healthy life for everyone. When will they know about the test results? Love, Sandi

pharmolo said...

Your other half means well, Dawn. It just doesn't help much... Nice cocktail of meds you're on, and no mistake. Watch out for sore throats.

thebaabee said...

As Pharmalo wrote, watch out for infections.  But I am sure you know that.  Those of us on any disease modifying meds know that well.  I'm glad you and your doc are in agreement as to avoiding long term steroid use.  I got roped into it and now can't seem to go below 15mgs without a flare ensuing.

I'm going to do an entry today that I hope you will read.  Hugs, LuAnne

http://journals.aol.com/thebaabee/LUANNESLIFELIVINGWITHLUPUS/

chat2missie said...

The condition my son has mimicks Lupus and MS.  I undertsand what your going thru.  
Missie

candlejmr said...

I cannot imagine living in the constant pain that you do and I hope that they are able to come up with something that will help you....and soon.

((hugs))
Jeanne

sugarsweet056 said...

Hoping you get an answer, & relief soon.
Sending up prayers!
Hugs,
Sugar

cyn4mc2856 said...

Hi Dawn,

What a wonderfully "funny" outlook you have regarding your appointment and your hubby's reactions.  Hey, I must say one thing for him...at least he IS asking questions.  LOL  

It's frustrating for BOTH the sufferer/patient, and the loved one/caretaker when someone is ill...even more so when it's a condtion/conditions that do, and will affect/effect everyday life.  We just can't seem to "swap places" in our minds and KNOW where the other is "at" in their minds and emotions.  

I pray the meds will work to give you some relief, and that you will have some "clear" answers once the MRI results are in.

Prayers for you and yours,

Cindy

tenyearnap said...

Why can't that MRI now be moved up to a sooner date, since this is now keeping your doctor from making meds decisions? I know....I am being impatient. I just want you to be everyone's priority patient, Princess! --Hugs, Cin

inafrnz247 said...

You are SO entitled to moments of frustration as you battle on through this.  There is no doubt that it can put a major strain on any good, strong marriage and your hubby is surely reacting to his own frustrations and worry for you.  Some days must be filled with the strongest of emotions ~ both the good and the bad ones.  But it's draining just the same.  

I can't even pretend to know what you deal with each day, but I see such strength and courage in your words and that helps me to know that you will make it through.  

::sending peace and strength for today and always::

Michelle

coelha said...

I'm so glad your husband was there with his questions.  He needs to hear what your doctor was saying.  I'm so glad you have a caring and understanding doctor.  You WILL survive this...  One day at a time...  Hugs - Julie

rdautumnsage said...

Doc used to be the same way, still is when I give in and go to the doctors. He gets so fusterated I think more out of the inability to help than anything. Our guys want a quick fix for something there is no fix for. Glad they where able to work something in for you with the pain. I hope hubby heard what the doctor said, truly heard her about you being entitled to feel the way you do.(Hugs) Indigo

lurkynat said...

lol! that bitchy when provked graphic is so awesome! love you,nat

deshelestraci said...

Hugs and peace to you and Hubby.  I did chuckle at the whole scene.  I know it really isn't funny but in a way it is.  He just wants you to feel good...so he can have more bills paid!!!!  I know that's how my dh operates!!!!  LOL
Traci

sangrialel said...

I sure do wish there was a magic pill to make all the pain go away for you!  Linda

wildautumn1 said...

I'm sorry to hear that there is no instant pill to make you feel better.  Must be very frustrating.  I hate steroids too.  Your story about your husband is cute. I guess men just want to be able to solve the problem (& not have us be cranky too)!!!! Keeping you in my prayers!

gazker said...

Dawn, with all this going on in your life, you always have the ability to look at the brighter things in life and make us chuckle. This is why we love you so much.
I hope you can cope ok until your new meds kick in? 3 months is a long while to wait when you are in pain.

Big hugs.......Gaz xxxx

tendernoggle said...

MY husband had several forms of arthritis so I know the pain you must be in...he too had to take prednisone because he could not functon at all without it...and also had to live on pain meds...so I know the severe pain associated with this ...
love ya,
carlene

emabecmar said...

with all your going through, you still make us laugh. you are one tough cookie and i am so glad i can read about you. lol i love the last tag with your name on it. I keep you in my prayers everyday. (((((((((((hugs)))))))))))
Cindy

donejustwrite said...

Gosh, Dawn, I don't know how you do it.  I really don't...  you amaze me.