March 28, 2024, 10:46:04 PM

News:

"Welcome to WiseWomenUnite.com -- When adult children marry and leave home, life can sometimes get more complex instead of simpler.  Being a mother-in-law or daughter-in-law can be tough.  How do we extend love and support to our mothers-in-law, adult children, daughters-in-law, sons-in-law, and grandchildren without interfering?  What do we do when there are communication problems?  How can we ask for help when we need it without being a burden?  And how do our family members feel about these issues?  We invite you to join our free forum, read some posts... and when you're ready...share your challenges and wisdom."


Yes Virginia, we have a diagnosis!!!!!

Started by Pooh, August 10, 2011, 08:48:18 AM

Previous topic - Next topic

0 Members and 1 Guest are viewing this topic.

Smilesback@u

I am so sorry Pooh, sweet Pooh.  I can definitely chime in and say that in the past three days, again I recognize how *strict* insurance coverage is becoming in giving out your benefits.  And how pissed I am at the medical and dental duck race to deal with insurance issues.  Carpal tunnel syndrome and cracks in teeth are the issues.  And the insurance company is dictating to doctors if and when they will allow treatment.  Hey - they are not gods and neither are the doctors.  At some point, insurance PEOPLE gotta ask themselves, would you treat your own family that way -- or want to be treated like that?   I am so glad you are being assertive when it comes to your health.  Don't quit advocating for yourself and teaching your DH to do it for you too.  Some days it is just too much to ask to get through the day AND convince medical staff to dig deeper.  Sorry again, Pooh.  sending you hugs,

Pooh

Thanks Smiles.  That was actually why I had to go off one of my medicines early Saturday.  Insurance sent a letter saying they would not pay for it any longer as it wasn't necessary.  I was mad, but it made me madder to read a line that said, "Out of courtesy, we are going to pay for the two prescriptions you have already filled."  Out of courtesy my hiney!  They get paid their premium every month! 

Smiles, I can't turn DH loose on them.  He is more than supportive and would probably get himself thrown out....Lol.  He's more frustrated than I am I think.

I'll catch you guys up tomorrow but all in all, the Doc visit went well.  I get to start predisone tomorrow (joy, joy) but we are going to try to take it and wean off of it quickly as the side effects are really bad.  I had to take it a few years ago for something (Z-Pac I think) and I remember it made me cranky, flushed, blood pressure up....and just blah.  But it's that or the chemo pills to suppress the immune system and I would have to take those for months.  This is the lesser of the two evils for now.  I am definately still flaring, was running a fever when I got there and have these lovely little bug-looking bites now breaking out all over my left side (that's a new one).  He said it was one of the symptoms of an autoimmune flare and I had just been lucky not to have them before now.

Can I give a blanket apology now for anything I might say over the next couple of weeks?  Thanks everybody for the support.
We must let go of the life we have planned, so as to accept the one that is waiting for us. -
Joseph Campbell

Smilesback@u

We got your back Pooh, rant on, rev up and do what has to be done for what's best for you.  (Thus, for the grace go I - it could be any one of us someday).  Take heart, you are strong. 

Rose799

Glad to hear your dr. appt. went well, Pooh.  Rant away, no apology necessary, Pooh...

luise.volta

Lovely Pooh - The whole lot of us are going to do it with you. I know you have to take the brunt of it but you have and army behind you!!! Sending love...
Be kind whenever possible. It is always possible. Dalai Lama

Pooh

You guys are great and I want to say thank you to everybody for the support.  It does help me to know that I have that army that are my cheerleaders.  I have a wonderful DH, DM, SF, SM and DF, friends and you guys.  I don't know how people that are dealing with things like this do it without support.  Thank you from the bottom of my heart.  I love you all.
We must let go of the life we have planned, so as to accept the one that is waiting for us. -
Joseph Campbell

Rose799

It's easy to be supportive, you're such an inspiration to everyone, Pooh...   :) 

Pooh

The Doctor story.  He surprised me.  They left me in the waiting room for 30 minutes which is actually odd for them and why I started scheduling their last appointment of the day.  They usually get me in and out.  The nurse told me as soon as she called me back, that he had her do it on purpose.  He wanted to spend some time talking to me.  Ruh roh!  Lol.  One of the reasons I love my MD is actually because I love his nurse.  She has Lupus and has been fighting it for 10 years.  During all of my stuff, she has been adamant to him and me that I had something autoimmune because my symptoms matched hers to often.  She has been very understanding and listens.  She shares her own stories with me and doesn't hesitant to pull up her pants leg and show me something.  She is a hoot too.  She is smartmouthed, funny and I have heard her tell him off on more than one occasion when she thinks he isn't doing something she should.  He has told me that she drives him batty but he wouldn't trade her for the world because he would be lost without her.

So, 2 weeks ago, I woke up to find 3 little bug bites on my thigh.  They looked like spider bites.  I had this horrid picture that some little spider had crawled in bed with me!  So I strip the bed and remake it.  Went on to work and itched all day.  3 days later, I find another one on my upper thigh and thoroughly ended up scrubbing my bedroom down that evening thinking that spider is still somewhere.  I vacuumed, scrubbed, took curtains down...Lol.  This week, I find one on my stomach and now I'm getting paranoid.  Shingles? Scabies?  Allergic reaction?  Ha ha ha...I'm such a dork.  Yesterday, while I'm at work, I get one on my back..so now I'm convinced it's not a spider unless it's hitched a ride to work.  So I'm telling the nurse about it asking if she thinks I'm getting shingles or something and she lifts up her pants leg and says, "Do they look like these?"  Poor thing has about 50 of them on her lower leg and she says they go all the way up to her hip, on her tummy and back.  They looked exactly like that.  So we compare bumps while she explains it's another thing that happens in autoimmune and they don't know why.  The theory is that if you have fever blisters (the herpies virus) when you have a flare, that basically it's fever blisters breaking out on your skin.  The virus is active and the extra antibodies are kicking it into overdrive.

So Doctor comes in, says he understands I'm running a fever, now have the blisters and have been in a flare for 3 weeks now.  With the blisters, he says that means I'm in a good flare or headed for a really good one and we need to act now to stop it.  He starts talking about what we are going to do first, what will be plan B, the side affects, the upsides - the downsides and I'm just kind of staring at him and listening.  When he's done I started laughing and he said, "What are you laughing about?"  I told him that I came in ready to do battle and was going to confront him about if he was going to treat me.  He told me I was silly and if I hadn't figured out by now that he doesn't give up that easily then I was going to find out now.  We had a serious talk then about his ability and willingness to treat me.  He told me that honestly, he knew nothing about my exact disease but that he had read some on it and the treatment was exactly the same of other autoimmune.  He said that autoimmune were autoimmune when it came to flares and many of the symptoms.  There were only slight differences from disease to disease and that since he read my particular one didn't go after organs, he was confident in his ability to treat it.  If things were not working or he felt later that he needed help, he would gladly refer me to one of the major centers if I wanted to go and we would go from there and we would learn together.

So good visit.  I still love them to death.  I will be starting on the first line of defense tonight for a period of two weeks to try and kill the flare.   Awful side affects and not going to be fun but got to do it.  If it doesn't work, we move on to plan B and months of immune killing drugs which is worse but hopefully not necessary.  So away we go!
We must let go of the life we have planned, so as to accept the one that is waiting for us. -
Joseph Campbell

Smilesback@u

Ruh roh! You made me smile, you are inspiring - and I am thinking you are a lot stronger than I thought cuz you really are dealing with some heavy stuff here.   Staying close by, hugs to you.

sesamejane

Yes, Pooh. Stay close by.  Sounds like this doc has your back for sure.