Scared of next month

[Lily0303]

I go to the rheumatologist next month dlto discuss my long term treatments. Jason, my fiancé, is going with me and is more than supportive. I just can't help but think the worst. That there isn't going to be much else they can do. Every time I'm alone I just cry myself to sleep. Especially these past couple days since I've been sick. Has anyone else dealt with this?

[Debbie C]

Lily, I haven't seen your other posts so I don't know exactly whats going on. It can be a scary disease and you never know what to expect. Hopefully your rheumy is an expert with wg, and its also good that your are getting treated. Its good that Jason will go with you not only for support but to remember the things that you'll forget. You should take notes. All will be fine, it just takes time

[Birdie]

Every time I'm alone I just cry myself to sleep.

That's not justified and it doesn't do any good. Treatment works. Look around here... it works. Instead of worrying you should oughta spend your effort learning as much as you can, to make wise decisions.

[Middlesista]

Lily - it is a good thing to review your long term treatment plan, let's face it we will have this disease long term so we might as well have a plan going forward and going forward and living our lives for many, many years is what we all are working towards -and work it is. I think I read you have had GPA since 2006 so you are well versed in what it takes .

I think many of us get down and discouraged at times -sounds like you have good support with Jason by your side. Stay as strong as you can - believe me I know it is not easy.

[debra]

Lily, go ahead and cry! Yes it does help! Will it cure you? No, you know this, but let me say this, if you bottle you're feelings you will break down!!! And trust me Lily, this is not fun either! So for you're mental/ emotional well being, cry you're damn ass off! And be getting care of coarse as I know you are, at the same time... What's the end result, emotionally speaking? A huge relief, where its now worked out of you're system, and now you can think clear for this sucky sicknesses and give you're man, more of you, rather than half... Half, won't work... I am praying for you as well Lily, so best of luck with everything... Deb...

[debra]

Lily, I just went to post, and my phone rang, call I've been waiting on all day, put the cell down to get my other phone, nurse calling, and tripped and missed the call by a second! Now their closed and its the weekend! So typical for me! Lily I agree with Deb, take you're man with you, because if you're emotional you'll forget stuff, even if you wrote it down. Let him be there and this will bring you closer, and you'll see blessings too, rather than just curses... Lily, I sent this to a special friend, suffering brings temperance, temperance brings patience, patience brings love, love brings charity, charity, brings hope... Lily, before you know it, you'll see the good, not just this sickness... Deb...

[Lily0303]

Thank you everyone. We have both been doing research and hopefully since I've been on a majority of the medications before it hopefully will be easier on my system. I try to not let him see how scared I am, try to be brave for him and everyone. I have the best support system ever. Its not really that I'm upset about all this it's the fear of failure. I don't want to let anyone down by getting really sick again and having to go to icu for the 3rd time.

[debra]

Lily, that's just crazy! You have a sickness, with a huge SUCK factor, that you did nothing to deserve getting! You're a person, not a machine! You will never fail, you can't... Lily, please be gentle with you're self, its not you're fault, and there is no failure... And in my opinion, get these emotions out... Cry, get a punching bag, name it the weg dog, and kick the living crap out of him!!! I do this... Deb...

[drz]

Thank you everyone. We have both been doing research and hopefully since I've been on a majority of the medications before it hopefully will be easier on my system. I try to not let him see how scared I am, try to be brave for him and everyone. I have the best support system ever. Its not really that I'm upset about all this it's the fear of failure. I don't want to let anyone down by getting really sick again and having to go to icu for the 3rd time.


I understand these feeling. I remember how I felt when I told my family good by cause I couldn't keep breathing anymore. They were working so hard to try keep me alive and I was going to fail them, but I was wore out and couldn't do it anymore. Fortunately there was an out and a couple weeks of intubation gave me the rest I needed and relief from the struggle to keep breathing on my own. But we have to accept there are limits to what we can do and what we can control. We all know it does no good to worry about what may happen except it drains us from the energy we need to cope with what we are facing now. Our present is the only thing we need to deal with, not some what ifs that might never happen. I suspect that you are like me and have gone through enough stuff to know that we can deal with whatever happens so there is no need to worry about it. Just deal with things as they happen and develop. I followed my advice and went to walk in clinic because of concern that my hernia incision is infected and I started on an antibiotic tonight. No need to worry about what if it gets infected or if the infection and surgery will cause a flare. Just focus on now and deal with today.

Good luck. PS. It is OK to be scared and to admit it. Thank them for their support and tell them how much you appreciate it but don't worry about letting anyone down. I don't want to go back to ICU for the umpteenth time but will if I have to and I will deal with it then. Since we have that experience behind us, it should be easier for us to do it again if necessary.

[debra]

Drz, great advice... So nice to see you posting again... Drz, take it slow, and get better... Deb...

[Lily0303]

Thanks again guys. I try and be a gentle as I can be but sometimes I want to be my old self and push it. Get lectured for it but not as much add I used to, taking life slower. If I'm going to be everyone's superhero I have to :thumbsup::thumbsup::biggrin1:

[debra]

Lily, just be you, and take a day at a time, better yet, a moment at a time! No one knows what a day will bring, sick or healthy. But, again, my personal opinion and advice is feel the emotions, and as you do, you get it out of you're system, and it leaves you with normalcy... Me, normal? No way... Nevertheless bottled up baggage causes breakdowns, then you'll have another thing to add on top of the weg dog... Good luck! Deb...