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Sjogrens Topics => Living With Sjogren's => Topic started by: sass on June 30, 2012, 07:55:18 PM

Title: ~sass~
Post by: sass on June 30, 2012, 07:55:18 PM
 I have decided to change my nickname to "Tigger". cause although I am not bouncy, wouncy, flouncy, plouncy full of fun, fun, fun!  I am feeling a bit Bounced!  My Biopsy of the Lungs are now at the Mayo clinic in Phoenix, AZ, as they are the world premier of lung biopsy. 

Makes one scratch their head!  I am still in the Hospital.  May get released Monday..or not. Depending on what new issues arise.  My hemoglobin has dropped and now they are adding the inflatable boots and iron.  Blood Pressure has risen and two BP medications have been increased.  IV Prednisone, IV Protonix, Discontinued IV Deltoid, Pain Patch on Shoulder.  Increase in Vicodin to From 1 5.0  2  7.5 every 4 hours.Neurotin every 6 hours , 2 Iron Pills twice daily, Vitamid D RX straight 2 times daily, and that is to my regular meds. 

We are starting to drawback the IV Prednisone in order to wean off for the home tablets instead of IV,  Will then later on be weaned off that and started on a chemopill.  With all this planning to kill my immune system inorder to get a "control only" of the Sjogren's inflammation that is aggressively attacking my lungs.  I am now using a walker, nice marroon with a big wide seat and a back and a litlle underseat pack, nice for water and such, portable oxygen and a variety of other things.

My incision where the drain tube was pulled, continues to drain and have had two colostomy bags that will not stay and irritates the skin horribly.  So back to bandages , that must be changed every 4-5 hours.  But a special skin cleanser/protection gel is elping leaving some skin on!  Still hoping not to have to put drain back in and then finding someone in my rural area that can change the bandages multiple times daily.  Remember my husband is handicapped in both hands. 

I have one of the top Rhuemies in the Nation and consider myself very Blessed that he was personal friends with my pulmonary that got me in the same day.  We are still awaiting all the final blood testing. 

Then the Hematologist have swarmed in and the buzzards now seem to be getting lower and lower. 

Internal Medical/Cardiologist came in and reviewed all again. same thing nothing new. but it hit me full force later on.      con't---------------------------------

Title: Re: ~sass~
Post by: sass on June 30, 2012, 07:56:14 PM
This particular autoimmune version of Sjogren's will be only a controlled situation, it has a high likelihood of going to IPF and a lung translplant, as a last resort, if they run thru these three chemo options.  And they are definitive that this is Sjogren's. 

They are very savvy on the subject and the strangest thing is I am one of the one's with all negative results.
Plaquenil is considered a baby drug for me, because it has already moved into the lungs.  It has been attacking my  joints, muscles, exocrine for yrs and now with the autoimmune of thyroid and the parotid issue , it is a full fledged monster, that has also moved into the esophagus, and next the possibility of the heart, with the BP raising.

I am still positive that my miracle has happened and I am a leader to wake up our society of what can be lying behind the corners.  I do not want to instill fear, but instead a shield, that you will be ready for battle.  Take better care, rest, take your meds, find a qualified Rheumy- don't let your PCP be treating you,  follow up yes, but not the treatment itself,  drink water, not sodas.  I was the worst.  Quit smoking! 

Open Lung Biopsies are not a walk in the park, and like others, once in the organs, it becomes harsh, leaving ourselves open to manifestations  that include joint inflammation; particular forms of autoimmune thyroid, kidney, liver, lung, and skin disease; and changes in nerve function of the upper or lower limbs. A small proportion of patients may progress to a form of malignant lymphoma. 

We have to fight this more.  There is not enough knowledge about this.  Consider that the top Pathologist at ST Luke's Hospital, one of the leaders in Lung Transplantation, has chosen to send my Biopsy to the One Top Sjogrens/Fibrosis teams in the World.  I was told that they are students/doctors/ of this disease.  It will read likd a novel when complete, that his team of 12-14 doctors will each study it for 8-10 each time. 

AND...AND...AND  IT MAY STILL TURN TO IPF---NO CURE!!  But where I am right now is basically like having Cancer.  I will be on Che-mo meds, I will have to be checked constantly, without all the studies and funding that goes into Cancer, I will be a hit and miss.  If not on A Constant watch for the remainder of my life, It will progress to IFP..Che-mo meds for the rest of my life.  At 53 seems hard, but I will prevail.  I will wear masks to Walmart or the grocery store or holding a grandbaby, But I will only Step Forward,  No Backwards Steps For Me!  I only have the Positive Direction to Go and I will go their b and only by the Grace Of God! 

I am sorry it was like I have fallen off the face of the forum, but sometimes you just have to shine your armor before you get back on the horse!  But Blow The Bugles Ladies and Gents for My Cry is that Of The Lord and The Trumpet of Gabriel will Play !  Stay Strong and Be Good to Yourself.  My only Request  that I ask of you is to Pray for My Husband, The Ostrich, pulling his sand soaked head into the bright sun of denial and realization.

all my love    ~sass~
Title: Re: ~sass~
Post by: Ark mom on June 30, 2012, 08:54:48 PM
Dearest, Sass, you are amazingly strong!  I admire how you facing this battle head-on.  I am very sorry that you are having to go through all of this.  I hope that things look up for you soon and that you will be going home due to a lack of complications.  You and your husband will be in my thoughts and in my heart.  I will be following your updates.  BIG HUG!
Title: Re: ~sass~
Post by: Gayle on July 01, 2012, 04:01:05 AM
Sass! Your back!

I am so glad you have finally got back on the horse! All shined and ready to roar! Prayers for you and your husband are strong! o glad you are too!
Hugs, prayers and more hugs!
Title: Re: ~sass~
Post by: engy on July 01, 2012, 04:32:56 AM

What a time you are having. I'm sorry this is such a battle. I'm impressed with your attitude & will pray for you & your husband. I'm praying your docs can help you even more than they are now.

We all love ya!!
Title: Re: ~sass~
Post by: artistangie on July 01, 2012, 04:35:03 AM
its obviously you are a beautiful person... through all this you caution us, through all this you think of others

I will pray too <3

Title: Re: ~sass~
Post by: Cricket on July 01, 2012, 04:43:11 AM
Sass you are back!  Glad to hear you are doing better.

What an ordeal you have had to go through!  Continued prayers for you and your husband. I will continue to praise God for the miracle He has given and more many more for you.

God has your name on the palm of His hand, and He continues to walk with you!

Title: Re: ~sass~
Post by: mshistory on July 01, 2012, 06:06:40 AM
Thank you for the update - I've been thinking about you and wondering how you were doing. Continuing my prayers for you!
Title: Re: ~sass~
Post by: MissyLouWho? on July 01, 2012, 06:13:28 AM
There you are Sass!  So glad to hear you in such good spirits ;D.  This has been a rollercoaster ride for sure.  May things continue in a positive direction for you sweetie!

Is there anyone close that can help with your bandages?  Or a family member that can stay with you for a time to help out?  Maybe insurance will cover a nurse for in home care...

Big hugs and hallelujah prayers!!!  And many more healing prayers too, of course :)
Title: Re: ~sass~
Post by: susan on July 01, 2012, 08:25:42 AM

Hi Sass,

Good to have your update, although I am sorry you are having a rough time!

You are right, this could happen to any of us and we need to take care.

Thank you for thinking of us in the midst of your illness; you have fabulous coping skills!
Title: Re: ~sass~
Post by: genko_b on July 01, 2012, 08:31:02 AM
Thank you so much for keeping us informed of your condition. We are all waiting to hear the biopsy results. I know how frustrating this can be, having had similar lung problems earlier this year, but at least mine have mostly resolved themselves.

Your husband must be so worried. We are thinking of you both, and hope you will soon find a way to relieve things.

Take care,

Title: Re: ~sass~
Post by: iraisin on July 01, 2012, 01:07:34 PM
Sass, I am numb after reading your post. I always thought of those who change the way others think as being "spokesman" for whatever, professional athletes, movie stars, energetic people who go out and "make a difference". I just want you to know, I have smoked since I was 14 years old - had SJS since I was a small child. My glands first swelled up in elementary school. I can't travel to dry climates or I get sick.

YOU. You and what you are going through, and what you say, and how you say it, is so impactful. You are so much more than one of those "spokes people". You have greatly impacted me and the way I will think from now on. You are such a magnificent creature...truly formed by God without any doubt.

I thank you from the bottom of my heart, for enduring, warrioring, fighting, and inspiring. I cry here, reading your post, that I will probably read everyday while trying to quit these cigarettes. Denial is bliss, but very temporary. Thank you for waking me up. I want to hug you so bad right now. There is no stress in life worth killing myself one cigarette at a time.

You are so strong in my heart right now. You're a true hero. I respect you very much. Many prayers of blessings to you, my friend.
Title: Re: ~sass~
Post by: eye2dry on July 02, 2012, 07:01:55 PM
Oh are so positive and brave.....I wish I had the power to take all this away from were heavy on my mind yesterday (sunday))...........

I continue to pray and hope for you.......

keep us updated as you can.

Title: Re: ~sass~
Post by: sass on July 03, 2012, 07:22:22 PM
WooHoo!! Home! 
  Wow, What an Experience!  And I could have not faced it with the tenacity that I got from you guYS.  i Started this post about 5 hours ago and things have just been so explosive around here.  I am very tired and have taken my night medicines, but wanted you to know I am home. 
I am delighted to be here and to share it with you.  Please give me till tomorrow to catch up some more.  Home Health Nurse coming at 10am and that will be lengthy.

Very Briefly for now- I got word from Mayo Clinic pathology/  I have an extremley rare lung disease called CHRONIC OBSTRUCTIVE BRONCHIOLITIS...NOT COPD AT ALL...i HAVE THE FIBROSIS ALREADY IN THE LOWER PART OF BOTH LUNGS!   It is in the Cystic Fibrosis Family, and I am ready for a fight!  Right now Steroids, then later it will taper off and then aggressive Chemo rounds,  etc etc.  Again all my Sjogrens blood labs are normal ranges, but without a doubt it is Sjogrens, related with some genetic thing in the lungs.  Mayo says it is within those parameters. 

Okay, I am dozing ...time to go!  We gotta get the word out!  Later on this.

Title: Re: ~sass~
Post by: Reanne on July 03, 2012, 11:17:42 PM
Sass,  I am glad you made it home and that you are hopefully sleeping by now.  You are unbelievably a strong and positive individual.  Thank you for the short update.  I always look for your posts when I visit the site.  You are in my thoughts and prayers. 

Title: Re: ~sass~
Post by: gmomjuju on July 04, 2012, 06:43:12 AM

So glad that you are home.  But I can imagine how hard it was with an open lung biopsy. Mine was awful with just a minimally invasive one. I had to come home on oxygen.  My results were an interstitial lung disease that is very rare called B.O.O.P.  or C.O.P. - 0.01% have it.  Go figure that us sjogrens people would have RARE things!!

Rest, rest, and more rest. The rest of us will take care of the praying part.

Title: Re: ~sass~
Post by: Gayle on July 04, 2012, 06:53:58 AM
Sending gentle firm warm hugs and tons of prayers! Relax and rest as much as possible!!!
Title: Re: ~sass~
Post by: 4Kids on July 04, 2012, 07:03:31 AM
Rest up dear lady. You are just so amazing. May I have just a quarter of your strength.
Title: Re: ~sass~
Post by: Sleepy In Seattle on July 04, 2012, 10:23:53 AM
Welcome home, Sass... :D

So glad you have such a good medical team - leaves you more energy to fight the disease, not the doctors....

Sounds like you are moving out of the darkness and into the light, now...all our hopes and prayers are with you!!!!

Rock on, girl... 8)
Title: Re: ~sass~
Post by: sass on July 04, 2012, 11:20:31 AM
hey, hey there!  Gonna drop a note before I drop a nap. 

2.5 hour meeting with home health nurse and lessons on wound care for this continually draining hole in my chest/lung.. but it is good for it to come out not stay in.  My grandson ask me how I peed way up so high on the side of my chest? Oh, The ponderings of an 8 year old.  I can only imagine how his little (problem-solving, engineering) mind was dealing with that one! 

Right  now I am laying in bed with laptop on a pillow, very comfy, but drowsy.  I slept very well last night.  One bandage change at 2 am.  Progress!

I have so very much to do.  Social Security , I need to call and sch 3 follow up appts for 2 wks...Hubby is worn flat out and would love to just drive off.  I told him, to go..visit do something, but then I still have my 85 yr old Dad that I cannot do anything with, must less to mention me.  He slept well too last night!

God has been sending me some much needed reminder scripture and everyday my eyes open with an ah-ha moment! 

My  twin granddaughters that most of you know as Callie and Kyndall had tubes put in ears yest.  Callie's was full of blood and puss behind the ear drum.  Kyndall was much better, but lots of fluid.  Then about 2 hours after going home, Kyndall started with a fever that progressed to 105.2.  Emergency back to dr and they feel like it is a viral thing.  She is much better.  Kills me to be like this and far away too.  But I am handling it one thing at a time.
 Some may know of Callie's birth and condition...She still has a hole in her heart with some leakage, but it is closing nicely.  She had the veterbrae and her neck x-rayed at that 1 yr marker and it was GREAT! Her mouth surgery was a success, but they will have to decide, how much cosmetic correction they want to go with!  Kyndall is a red-headed fire cracker that swings from laughter, happinesss to cut you with those eyes little temper act, and just as quickly..back happy!!! Callie a little flirt and tease is only a tin bit shyer, but she has these precious huge eyes that let you know when she is ready to let you in her circle! 

I just had to talk about something other than me...There is much happiness in my life.  This is a huge amount of turmoil also.  My Daddy is some of that, but he is also the love of my life.  A precious man that can turn depressed, angry, loving and hurtful.  He just drug me out of my room, furious that he thought I had started smoking.  He saw it with his own eyes.  I could not tell him otherwise...Furiously hurt, he wept that I would do such a thing!
Carefully, I explained over and over that I was just using my new breathing machine (one exactly like he uses) and he only saw the vapor from the machine and it looked like smoke.  After several times, he understood!  And then he cried as he felt so foolish and another burden to me.  He felt so ashamed to think I would smoke! 

But as I say, It is what it is and I have turned this over to God at this point.  I mean from this point on,  I am letting him handle it.   I relinquish this battle and my load will lighten for a while. 

At least, I can say it has been hysterically funny at times.  My handicapped both hand husband has been changing my bandages and the laughter that we have shared trying to just watch him use scissors has been a Godsend.  And then I thought, Oh my goodness, how stupid can I be...This is the man that told me to bring him some tweezers to pull a tick of my little jack russell terrier, Kassie.  When I arrived with the tweezers, I found him trying to pull the one black nipple off her tit!  Now...Who is the Crazy One!??.

Nap time from ~sass~  love to all you booutiful people!     

Title: Re: ~sass~
Post by: quietdynamics on July 04, 2012, 12:05:31 PM

Sass...You are too funny..God bless you and your family...Hey I have red-heads too.
Your poor dog...ouch.  Sounds good to be home and enjoying the brood.

I remember when my son was 4 and was watching me change baby sister: Mom, when is Missy going to grow her peces?


You sound so great.

Title: Re: ~sass~
Post by: iraisin on July 04, 2012, 12:06:39 PM
YOu're such a joy, Sass. Settle in His warmth. It's always a good place.
Title: Re: ~sass~
Post by: Sleepy In Seattle on July 04, 2012, 03:10:06 PM
Oh my goodness - make sure you're wearing a good bra when hubby changes your bandages....  :o :P ;) ;D
Title: Re: ~sass~
Post by: Iris on July 04, 2012, 03:36:31 PM
I'm so glad you are home and feeling somewhat better...  Your humor and wit make me feel better every time I read your posts.. You never fail to make me smile and I thank you for that..  :)

You are still in my prayers..
Title: Re: ~sass~
Post by: sass on July 04, 2012, 04:40:25 PM
breakdown time........ i am alone.  no one to sit and hold my hand. Men go off to talk to their friends...Ride in the woods. Blow off steam.  let it out.  where does a woman, alone in her room go.  Silly me, on my knees. 

So do I post, or erase???  I am strong, but I still need.  No  sister, no mother, my daughter has no other..the distance...from everyone, too far to travel, too sick to be around others.

My husband is floundering.  Never been good at anything like this anyway, so now..don't know if he is confused or his same ole dense of pretense??  We talk..he seems to get it. wants to help, but only if it is around how he wants it scheduled.   

Our morning time, when it is cool enough for me to even go outside, his best friend, a neighbor came by and I had to go in because I can't tolerate the smoke anymore.  I hold nothing against him.  I just lost time, I will never get back.  And hubby felt it was more important because he had the need to talk to a regular old guy that has nothing to do with all this.  I felt sequestered.  Of course, I found things to do..And when he left, I was reprimanded that I should have taken the opportunity to drag out my walker, hoses, oxygen and taken a little walk.  Alone! 

On the way home from the hospital, I had him stop to go to the restroom and he sat in the truck and let me go it alone.  So he could keep the truck cool. I went alone, no oxygen, no walker, no hand to hold.  And when I walked in with my jammies and house shoes some man took one looked and said.."OH, My Lord"  Look at this"!   Alone, I went shakily to the bathroom and when I came out he was there and said sorry, I didn't think about you, I just wanted to keep the truck cool. 

So do I post?  or erase?  We all have weaknesses. My Faith is mighty!  My humor is real!  My husband is not perfect..He can be crass and rude and he can be helpful. I told him we should get someone to come be with me so maybe he could take a few days off from this and just rest too.  He went berserk, that no one takes care of his problems.  He takes care of his own.  Now I realize these are words and I am on medications that make me weird.  But am I wrong  or just a little bit right. 

I just want a shoulder.........               

now please don't let me bring you down...i know all what you each will say.  I feel your love and your heartbreak.  My guiding lights you are. 

I was told this is extraordinarily rare..only a few cases in the world seen and I think,hmmm..... is that malarkey?, This is what one of his partners filling in for him said to us.  we both heard the same thing...,  I just have to wait to my real pulmonary returns from his July 4th holiday, which will be next week.   

okay, I will call tomorrow and sch an appt. 
So all better now..Back up on that dang ole horse...

I post!!!!         ~sass~~~~~~Ole'
Title: Re: ~sass~
Post by: iraisin on July 04, 2012, 04:59:19 PM
You have my shoulder anytime, any day. Think of it like this - it's probably a testament of your incredible attitude through all of this that he doesn't realize the seriousness and how tender you are about it. Most of the men I've known through my life have to be able to fix things.

This could also be hurting him in that way, that he can't "fix" his best friend. I know my father is like that. When he sees his girls hurting, he's sensitive, but then he goes through tuff phases to try and "snap" us out of it - in an effort to fix us.

You have us during all of those times :). Post away! express yourself. to me, that's part of living.
Title: Re: ~sass~
Post by: mshistory on July 04, 2012, 08:16:21 PM
I'm glad you posted - sometimes we just need to get things OUT and when we do, it is so cathartic. I wish I could give you a real - but very gentle - hug, but since I can't, here's a very gentle virtual one (((HUGS)))

You're in our hearts and thoughts.
Title: Re: ~sass~
Post by: Iris on July 04, 2012, 10:00:55 PM
Men just don't get it sometimes.... They don't get that when they go out and talk to friends to get away from it that they are leaving you alone with it all.. I don't think most of them will ever get it though..

If you want I can give him an attitude adjustment on top of his head..  ;D
Title: Re: ~sass~
Post by: irish on July 04, 2012, 10:20:50 PM
sass, So glad that you made it home, even with the tube in your chest. Sounds like you were glad to get a good nights sleep in your own bed without a noisy hospital.

Have to add that men in their natural environment don't get a lot of things. Place them with a sick wife and they just lose it a lot of the time. They just can't multitask or multi-think when it comes to the wonderful world of medicine. Hopefully, he will figure out what is going on one of these days. If he doesn't you will just continue to love him anyway cause that is what wives do.

Keep ventinig and sharing your wicked humor with us and all the prayers will carry you through this ordeal. Irish
Title: Re: ~sass~
Post by: KarenR on July 04, 2012, 11:19:15 PM
I have found that most men are not intuitive and just don't know what you need or what they should do. When I was married for 20 years my husband was very loving and helpful but never knew what to do. I found that if I gave him a list of things to do he was very happy to do them. If I needed help with something, like washing my hair or changing bandages, I just asked him to help me and he was glad to do it. I think most men feel helpless and worried that they are not doing enough. Like all of us they need praise and validation. My ex still helps me with big projects around the house and I know I can ask him to do just about anything. I've told him that I don't want to take advantage of him and that if he can't or doesn't want to do something that he can just say no. He hasn't yet and that is a blessing for me. I try really hard to remember to thank him profusely for his help.

Both of you have  been under a lot of stress the last few weeks. Maybe the next time your home nurse comes you can ask her if they have anyone that can talk to him, like a social worker. He probably needs to talk to someone about how afraid and worried he is. My dad was like that when my mom was sick. He didn't want to talk to my mom about anything because he didn't want to make her worry about him when she was going through so much.

I hope time and rest will put both of you more at ease and make you more comfortable.

Karen R.
Title: Re: ~sass~
Post by: Gayle on July 05, 2012, 04:49:20 AM

That ole grey mare you keep jumping on, over and over again is very patient and you can get on and off as you want! Hugs and prayers are always with you. It seems your husband needs a more patient mare... she is leaving him stranded once in a while. Like others have said, that is normal man.. He needs some direction from someone other than you. A social worker to talk to would be great or maybe your nurse can help. Now he only has the neighbor. Better than nothing! He will learn his way as you are doing still also. Men just need to  'fix' things...

I hope you post - I know you'll dance again!

Know you have strong loving support, hugs and most importantly - Prayers!

Title: Re: ~sass~
Post by: Sleepy In Seattle on July 05, 2012, 09:04:30 AM

I don't know you but you sound so strong, and funny as all get-out. I bet he loves his sassy woman and it's very hard for him to accept that you can be so strong and funny and also incredibly afraid and frail all at the same time. I think that sort of complexity is more a female trait than a male one - guys tend to be one thing or the other, not many things all at once. (There are always exceptions of course, on both ends).

I bet he's scared and tired and also sometimes just clueless.

I've read (and experienced) again and again that guys - no matter how well-intentioned or loving - need VERY SPECIFIC INSTRUCTIONS, and tend not to be intuitive about needs. Part of this "new normal" for the both of you might include you having to SAY things that you might not think you'd have to - or that might be obvious to a girlfriend.

Like  for instance "I don't want to go to the restroom in there alone - I still feel weak. Could you please walk me over there and back? I'd rather have you do that than keep the truck cool right now...thanks, hon..." Now, a woman might just KNOW that and go with you without you having to say anything, but guys usually need things spelled out to them.

I guess you'll have to pick and choose what you ask for and how you ask for don't want to overwhelm him. But I bet the two of you can adjust to the new normal" and eventually he might get better at predicting your needs.

But yeah - I imagine he will need some breaks, too. It's hard being sick, and it's hard being a caregiver.

I know a lot of us wish we could be there to help you!!!!!
Title: ~
Post by: sass on July 05, 2012, 12:09:09 PM
Gosh all you gals are so smart!!  My steam blew and it will again I am sure.  I really have a great man!  Part of my impracticalness is a new she devil..Prednisone!!!    So, I am looking like the Macy Day Parade Float of WONDER to save the world...And I am sure that I will eventually win the  B--i--aaaaacch  award sooner than later.  But onward I will stride.

Walked about 1/2 mile early this morning.  I am trying to work some of this soreness/pain out of my left breast, where they stuck the dagger into my lung.  I will give it till tomorrow and call the surgeon if it does not ease up.  Was like this in hospital, went away and is back.  Then it could be that healing process.    and no I am not overdoing it!!  Thank YOu!

okay, back to those SSD papers. finished the first pack and now on the work history pack.  How can they be so stupid sometimes.  I answered a question...Do you wear prescription glasses...YES....Why? see!  Did a doctor prescribe them for you?    duh!!!!

Anyways----wish me luck and no sarcasm on these packs.  way to important!   ~sass~
Title: Re: ~sass~
Post by: sass on July 05, 2012, 07:21:13 PM
OH MY HOLY COW!!!  WHY AM I HURTING IN MY BREAST SO MUCH!!!  Is this those nerves and muscles I heard about.  Open Lung Biopsies are very painful!  Feels like my breast is full of boiling grease!!!  Comments anyone???  Full of drugs right now, but will ck back.   

Title: Re: ~sass~
Post by: Cricket on July 05, 2012, 07:32:14 PM
Oh Sass that does not sound right to me, you should call doctor.  Sending up prayer that it gets better.

prayers and love being sent to you
Title: Re: ~sass~
Post by: sass on July 05, 2012, 10:37:20 PM
Thanks Joanie...I went to a forum called Huff and Puff and all those people say this is about right, but i call the surgeon tomorrow to ask!  It feels like I pulled something in the breast.  at times with no movement,,very little pain but if I just turn or walk it splits me open! 

Taking Vicodin now!  Thanks for the words!   ~sass~
Title: Re: ~sass~
Post by: Reanne on July 06, 2012, 06:42:12 AM

I am sorry for you pain.  Several weeks ago I fell and pulled or tore or something the chest wall muscles or cartilage in my chest.  It was painful as it healed.  I can't imagine surgery in that area.  It took a full 4 weeks to feel better.  Hopefully your pain is normal, but  call to the doctor's office is appropriate.  I hope you feel better soon. 

Title: Re: ~sass~
Post by: sass on July 06, 2012, 06:56:55 PM
You know I like to say, "It just don't get no better than this" when I have something going on and I get another fun thing to add to it.  Well, here we go..I have the bone growing out of the other side of my mouth again.  The Tori Ridge.  I just don't know how I manage to get these oddities.  But, as usual , "it jus don get no betta"!

I am recovering a little better since I upped my pain meds.  The boiling grease in my left breast has become tolerable.  The incision area is still draining, but has lightened some.  So, no more waking up hubby in the middle of the night to change a bandage.  We switched to using a Kotex instead of the bulky gauze they sent home, and it works very well. And he actually is able to handle it better than the bulky gauze.  And I guess you can just imagine some of the comments made!  He said, "Who ever thought that at age 54, I would be learning how to put on a Kotex!"...."Go Figure"!?!!???

 I did have a small allergy to a nurse that jerked the bandage off on night at the hospital and took most of the skin with it. I found some wonderful skin barrier that you apply before the tape, as well as some protective allergy free tape.  Cavilon Skin Barrier and Hypafix Dressing Retention Sheets.  These two items have saved my poor dry skin from the constant bandage changes, because the paper tapes and adhesive tapes were killing me.

I also found that Cavilon makes a dry skin lotion that I will be ordering to see how well it helps us dry skin lizards.  But, I am sure you medical and more experienced than myself probably know about these items, just thought I would share with the few like me.  I will keep this on supply for grandchildren, Dad and Craig!

Well, I waited a wee bit late to take my pain killers tonight and the band of ice skating she devils just took up a hockey game in the center of my chest!  Along with the machete swishing monkeys swinging thru my rib cage is making me cringe. 

I was trying to wait up past dark to be able to see the up-lighting under my trees that we had just put in before the phone call to go to Houston.  We had them all set just right and while away Dad thought they were some kind of new bird feeders and moved them all around.  Whatcha gonna do??  He also removed the numbers off of our mailbox because he thought we had the County Road Number and the House Numbers Reversed.  After 11 years! HAHAHA!!!   At least we are a lone mailbox on a lone dead end road!
I start to hang my head to cry and wind up laughing my butt off instead!   

Now if the Pharmacy will just get in my increased dosage of Vicodin I will be a happy camper.  I only use it when I am getting really bad, due to not wanting to form any new habits!  The doctors keep saying "use it, don't hurt" , but I have seen a good friend go down that road and it scares me!  But, you know..."sometimes a girl, just gotta do what a girl gotta do"!   

 Hugs to all and Special Prayers for all those facing obstacles that seem too big cope.  Let me hear from you. 

Oh yea, I am still working on that book!  slowly.....       ~sass~
Title: Re: ~sass~
Post by: Reanne on July 06, 2012, 07:18:10 PM
Hope you are resting well by now sass.  Hopefully your lights look beautiful!!  :)
Title: Re: ~sass~
Post by: Sleepy In Seattle on July 06, 2012, 07:21:18 PM
I understand not wanting to take pain meds - it CAN be a scary road - but that's a road you should maybe worry about LATER. Right now you need to heal from a lot of things, and pain sets off all those awful biochemical stress reactions in your body that make healing very difficult. Cortisol and all that stuff - horrible for cellular regeneration, which is what you need!!!! So take enough to relax and give your poor ol' body a chance to HEAL....give yourself some TLC! (And yes sometimes that comes in pill form, LOL...)

As self-aware and funny as you are, and with your family to support you, I have trouble imagining that you will have problems getting off the meds when the time comes. And if you do, you will have the good sense to seek whatever help you need to get it done.

About 5 years ago I broke my leg badly and had to have a plate and 7 screws put in. I waited way too long to seek treatment (long story that's funny/embarrassing/unbelievable but not really relevant here...) and as a result I went through about 10 days of EXCRUCIATING pain - waaaaaaaay beyond childbirth - and childbirth almost killed me (literally). Anyway - they gave me oxycodone (bush league....) and high-dose oxycontin (yes the serious stuff that people commit crimes for) - I was so resistant to it because i had heard it was terribly addicting, but they said TAKE IT - YOU WILL GO INTO SHOCK IF YOU DON'T - and they were right - I dang near went into shock WITH it - AND the other stuff, AND tylenol, AND 24/7 ice packs, etc etc etc. But what really convinced me was how they said that pain can ravage your body's ability to heal. You HAVE to be able to BREATHE and RELAX and sometimes SLEEP in order to heal. The pain meds enable you to do that.

When the time came, I had NO PROBLEM getting off the stuff - in fact, I had a lot left over that I had to get rid of! I did NOT like the way it made me feel. But I sure did appreciate the relief from pain when I needed it.

Oh, and just in case they didn't tell you - lots of pain relievers make you HORRIBLY constipated - having stool softeners on hand is a good idea. Sorry - I know that's gross, but maybe it'll help. I don't know if Vicodin is the same way, but most narcotics will do it, apparently. Yet another reason it feels good to get OFF of them when you can!!!!

I think you have suffered WAY more than enough. I hope you will be kind to yourself and take what you need to be comfortable and heal. XXOO
Title: Re: ~sass~
Post by: sass on July 06, 2012, 08:02:40 PM
lights look great!  Meds on board!  CPAP...CHECK, ..O2...CHECK....LAPTOP..well..ummm duh!  Be adjusted and resting comfy cozy...

Gee whiz sleepy, you been down a road of pain!! 

oh yeah...i do need a better, no, not tonight    ~sass~.
Title: Re: ~sass~
Post by: slccom on July 06, 2012, 08:10:12 PM
Rest well, sweet Sass! Gentle, gentle hugs. And take those pain meds! God gave them to us for a reason. Sharon
Title: Re: ~sass~
Post by: Sleepy In Seattle on July 06, 2012, 08:48:29 PM
 ;D So glad you took the pain meds and are resting....I will sleep better tonight knowing that!  :)

And really I have been incredibly lucky in life - not much pain or sickness - no broken bones or serious illness until I was 29 - just a couple of intense experiences between 29 and 39, and then in the last few years this dang autoimmune crud, unfortunately.

I just desperately want to think that whatever I learned and can share from them can help somebody else. SOMEthing good should come from have shared so much useful and supportive information here that if there's a SHRED of information in my brain that you can use, I wanna put it out there for you!!!!! It's all I got.

Sleep well and have healing sweet dreams...
Title: Re: ~sass~
Post by: iraisin on July 07, 2012, 05:18:48 AM
Wow. This post has been very educational. I just love it here.

Sass, you are the bomb, girl. I can totally imagine us hanging out in our younger days just chatting and playing away. You have such a way about you that is so endearing.

Love and prayers to you Sass, and to all you other beautiful people here.
Title: Re: ~sass~
Post by: sass on July 09, 2012, 08:39:32 PM
Yes, I could see so many of us hanging out. Back when the days were more carefree and painfree..But even more I can see us hanging out now.  Could you imagine the kicks we would have IF we had a big gathering.  lol, it would be a hoot.

 So many of us connect on each others level and we just have more than an illness in common.  We have a different bond.  One of compassion.  Of Understanding.  Of Care for each other in the world.

It is amazing to me that we come here and I don't see arguments, political scandal, racisim, or bullying.  We are truly a unique bunch.. We offer each other hope .  We say prayers and If we have a different opinion of what a christian is or is not, we are not voicing them.  There is no Drama, no Flair for popularity. 

This place is easy.  In spite of all the pain and anguish we see spilled upon these pages, there is love!!!   

And on the flip side of that, I broke a tooth!  Now isn't that just a jam up way to
"it jus don get no betta"!    Thank You very much Sjogren's.  We now try to find a way to finance some dental work.   

I am laughing my way all the way to the bank....Humor afterall is the best medicine...and be that true than I am one healthy person because I am one happy person here with y'all......~sass~
Title: Re: ~sass~
Post by: sass on July 09, 2012, 09:00:21 PM
oh yes, had to share this one with you too.....excuse the typing,I copied and pasted from a note to a friend but wanted you to read it too.....

today Dad put out birdseed, in all of my uplighting for my trees. brand new and solar supplied. He pulls them up and sets them straight up and fills them with birdseed. We just got them for our anniversary...So, i took him back out and explained again that they are lights not bird feeders. We have tons of those...anyway he says he knows exactly what they are and I go on and start dumping the seed out and wiping the glass clean..When I go to the third one, there before I lean to pick it up, nicely coiled around the base of a tree is a 5 foot FAT rattlesnake. I saw the movement rather quickly and not a scaredy cat, i called out to Craig...Now not just a few mintues earlier my 85 yr old hard to see and hear father was putting around on his scooter throwing out lucky I am that he was not hit...but looking there I then saw it was the only one that he had not put seed in....God kept him from going to that ONE!!!!     just sayn'     ~sass~
Title: Re: ~sass~
Post by: Reanne on July 09, 2012, 09:06:03 PM
Wow sass.  What an Awesome God we serve!  I am so glad your dad is safe!
Title: Re: ~sass~
Post by: sass on July 10, 2012, 12:45:53 AM
you hit me square between the eyes....What an Awesome God We SERVE!!!!  I think sometimes that I get that backwards...I need to learn more about serving HIM..

So often, I think of what he does for he has performed so many miracles in my life and I may have gotten a little placid there in the protection of his loving grace. 

But other than am I truly serving him...I guess, that I am really searching my heart in extending what I need to hear him tell me.  I know he wants me back in the church and I resist. (Kinda like that anti-gluten thing.)  I need one that is a home.   But than again, it should be about me serving HIM!   

Thanks for the well wishes on Dad...  He wasn't phased...wanted me to give him a box of salt to sprinkle on ant beds...then was mad at me because I would not give it to him....ahhh,  maybe it is I that am  teetering off my rocker!     ~sass~
Title: Re: ~sass~
Post by: Gayle on July 10, 2012, 04:11:18 AM

So glad your father is okay and you are so blessed!
Title: Re: ~sass~
Post by: Sleepy In Seattle on July 10, 2012, 07:54:05 AM
Sass, you DO serve  - magnificently!!!! You are an incredible light to all of us....people who very much need your example and good-humored lovingness.  :)

Isn't that what we are all called on to do and be? You are truly an inspiration.
Title: Re: ~sass~
Post by: iraisin on July 10, 2012, 10:21:38 AM
Oh! I just love how He loves us! Thank you for sharing this.
Title: Re: ~sass~
Post by: Cdbhappy on July 10, 2012, 01:32:41 PM

I agree with Sleepy in Seattle, you are serving Him by the way you serve us.  With your honesty, faith, humor, and very entertaining life at the end of a country road.  Thank you for keeping it real, and yes do find a  church that can minister to you too.

Love and prayers,
Title: Re: ~sass~
Post by: Reanne on July 10, 2012, 01:36:52 PM

I agree with cdbhappy and sleepy in Seattle.  Many people in your situation would not be as positive as you are.  You do recognize the things He does for you.  You are such a blessing to all of us here!