Back from doc

[Cindy]

Today I had a follow up with my internist. I guess I cant complain. starting today I'm going to take a low dose of prednisone 5mg and plaquenil 200mg a day. Im going to take prednisone for a month until plaquenil starts working, I will continue evoxac is helping me a little bit more than the beginning, is not the effect that I wanted but is working. He send me to the eye doc for a check up because of plaquenil and also gave a special vitamin for my hair problem, hopefully it will stop falling soon.  He did told me that I need to see a rheumy in the next few months he is going to recommend somebody that will not be to pushing with the biopsy. Last one that I had was very pushy and didnt want to treat my symptoms until biopsy was done. All good right? I feel sad I wish I was healthy and there was no need to take medications, today is one of those why me days. I cant complain because right now my symptoms are not bad, I cant help feeling down. I want to cry and tell somebody but my family thinks that I going to be super OK since there is a plan to follow and new medications will help me and Im going to feel OK. They just dont understand why I feel sad. Enough of me.
How is everybody doing? There are a few young moms in this group. Any tips on how to maintain young kids busy during this heat.

CINDY

[Gayle]

Hi Cindy,

I am glad your Dr is helping with some meds to settle your symptoms down and also to find a better Rheummy. That is so important! It is hard to not wonder 'why me', 'now what', etc and we all do it once in a while. Better to ask why not me... it helps to remind you that you have a choice... deal or not. Show others how or not... Your friends and family don't understand it yet and may never really understand. They just want you better. They can't 'see' anything... it is hard for them too... Give them a copy of the spoon theory. It might help. I printed it and set it on the coffee table for a couple weeks... many read it... it was better this way for me as I was not ASKING them to do it. Last week my sister asked me if I had any spoons left for company... was a surprise and very nice she remembered...

Your in good company here, with a lot of young women, moms and even us 'older' ones, who were sick back when... just didn't know with what a lot of times. I got sick when I was 26.. At least you will have some treatment and a chance to feel better whereas many of us didn't! Just do what you can, maybe take walks, go to the lake, do some fishing in the evenings... Use bug spray! I lived in Fl the whole time practically so I understand about 'the heat'.
Good luck, chin up, you will be just fine! Many hugs for you!!
Gayle

[iraisin]

yea, this is tuff. Some days are better than others and it can get old really fast. Hang in there. Remember that you are human. Remember that your family is human. Remember that the only perfect person ever, was Jesus. So if there's days you don't muster up, that's okay, none of us do either.

Cry if you want to. You're living this - no one else is going to live it for you.

I agree with everything Gayle said. Good wisdom there.

Love yourself, Cindy. You are worth that even if you don't feel like that sometimes.

Bless you, sweetie

[4Kids]

Aww, those days are hard.

RE: the kids thing.  I. AM. GOING. CRAZY. Does that help??   Probably not. We put out a very big paddling pool and they all splashed and played for two hours. We have a/c so we are hiding in the house. I am currently packing up to move while taking care of all 4 and feel like jumping in said pool and staying there.

I try to take the kids to something fun every day or every second day at the latest.  Last night was Chuck E Cheese (baby of family slept all night long the night before to earn that trip), today was the pool, tomorrow we will go for ice cream. Then we sit and watch a show in the cool  and I try to pack a box or four.

What vitamin did he give you for your hair?  I need some. Mine is ok, it is recovering but my ferritin is still low at a 10 (has come up from 7) but anything would help, I guess.

Actually I have wished occasionally, just a bit, for a low dose of prednisone like that. Honestly I feel like I could use it right now. I feel weighted and tired. Plaquinel helped me quite a lot but today is the AWFUL DAY before my period comes on Sunday, same thing every month, it is just the bad PMS day.  I try to go easy on everyone because I am kind of the Wicked witch of the West here on this day.

I felt like you, and I have given up the anger over meds. I am not telling you to, but after a while I have been able to stop taking this one and that one (ie. Restasis and nortriptalyne) but kept Salagen and Plaquinel and hope maybe I could give up those after some time passes.  Not sure I ever will, I have cut back the Salagen and here I got esophageal spasms which I wonder if that is a side effect of more dryness, and that has got me feeling down too.

But I do what I always do which is drag myself up and carry on even if it is 1/4 the pace it should be.

Much love to you, hang in there.

Jackie

[Ark mom]

Hey, Cindy, you know I follow you around and have to reply to ALL of your posts because you are my girl!  .

I am so happy that you got into this doctor and that he is getting things rolling for you.  The prednisone will probably make you feel better for the first week.  At least, that is what it did for me--very energizing.  After about a week or so, when your body slows down it's own production of cortisol from the adrenal glands, then don't be surprised if that feeling kind of goes away, especially since you are on a rather small dose. 

Finally, after about 4 months on Plaquenil, I feel like it is starting to make a difference, just barely, and I have been tapering off prednisone by 1 mg a week.  I'm down to 12mg this week!  I feel like some wacky Japanese game show host needs to jump out and give me some sort of award!!!

I completely understand the lack of understanding and connection with family members.  At least your husband is WAY better than mine in this respect.  Things are getting better for me once I realized that each person is going to find different ways for coping with this, some better than others, some more empathetic and caring.  I have given up on getting anything that I need from any of them and have turned to a therapist, my new friends on this board and happy pills.  I cry so much less.

I get you, honey.  I am here for you any time!  Love, Hannah