Author Topic: New Topic: Information Update on Sass  (Read 11321 times)

Gayle

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Re: New Topic: Information Update on Sass
« Reply #45 on: June 17, 2012, 05:50:00 AM »
Dear Sass,

I am sending you a strong, gentle, sweet hug, warmth and softness like a baby blanket. Smelling of lavender and powder... ((((HUG))))

Okay - stay in that warmth and know you are not alone!

You have all of us and if you need someone to help you make calls, ask, ask on PM or write it here and we can help. If you need to find a place different in Houston, let us know. There are contacts there that we can pull from. If you need to vent, we will listen with love and understanding...

 IF HOWEVER you want me to take on your dysfunctional (but sometimes loving) family... sorry, I have my own! I can honestly say if you wanted to trade, I would switch, but mine - well,,,, would make a sailor blush and the devil run.

 On the other hand, it is good to know YOU are not alone. For while you can not pick your family, you can your friends and we are all here for you!

 I know we don't actually socialize with each other...(boy that would be nice) but then I don't with my family either. I know my hug is virtual and that is not as good, but it is a hug that will hold you all day and night, when you can't sleep or eat or even when you are dozing from exhaustion. All you have to do is remember the hugs and prayers and strong healthy vibes we are keeping you in. So... that said, relax, smile slyly and know we are holding you up when you can't. We are your extended family by choice! We all love you.

So... rest today, make a list of what needs to be done... Tomorrow is a good day to start checking it off.
Delegate to others, family or not, what you need - you don't need to explain it. If they are too busy, too stupid, too stuck in sand... not YOUR problem.
So... if I can make calls, let me know.. If you need your husband to do something... he can. He is not able to read your mind and would probably be happy to be busy helping somehow. And if not, too bad... honestly... it is just too bad.
Pack up a little bag today. That won't be difficult. Get it ready. Make a list of what you may need from the store. Ask a neighbor or someone if they are going to the stores, to pick this up for you. It is okay to ASK!!!

Your family is here for you, let us know what you want.
So, now a nice cup of tea and paper and pen ready... take a slow, deep breath and start...
I am ready!
Gayle

susanep

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Re: New Topic: Information Update on Sass
« Reply #46 on: June 17, 2012, 06:11:32 AM »
I have been reading this thread sass, and am praying for you, and those in your family. Just remember to take one day at a time, because when it is all said and done even so called healthy people can't know what the next day brings.

Take care, and we are all here.
susanep :)
Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Mobic, Prilosec,, Xanax, Restasis, Systane,Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventi

iraisin

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Re: New Topic: Information Update on Sass
« Reply #47 on: June 17, 2012, 06:16:58 AM »
Family members often have a hard time dealing with the chronic illness of their loved ones. It's hard. I know mine would really prefer I don't bring it up or talk about it - and most certainly don't want me to ask them to do more than what they are already doing to support themselves/families to pick up my slack or help. Fortunately I haven't had to do that - hope I never get to that point.

I know I will have to lean on organizations if/when my disease becomes too much for me. Acceptance of this sort of situation is key. Once you accept it - the hurt of your family not reacting the way we imagine them to in our fantasies (I say that, because often times I lean to the romantic/ideal ideas of life and what should be, rather than reality) won't be an issue. You have then, at that point, accepted what is and will manage your mind and body in a coordinated, organized world that you custimized to suit your situation regardless of the willingness/reactions of those connected by blood or covenant.

I'm glad you spilled your guts on this subject. All of us could face this side of the illness if we are not already. I for one, now after reading your plite, am going to research for a network locally to help me through the periods of difficult health issues.

We are here, and willing. You say the word(s). You are the director, we are the actors.

Just remember, you are a loving woman - full of good things and you've offered those good things to others...freely. That is what makes you so special. If everyone did that - you wouldn't be so special. YOU are SPECIAL!

susanep

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Re: New Topic: Information Update on Sass
« Reply #48 on: June 17, 2012, 06:17:25 AM »
Sass, I am sorry I have been a bit late in commenting on here, but I am the one that lives right next to my dad, and so since my mom passed away in March, me and my husband have been doing all we can to help him.

He is in his own home, and does well physically even though he will turn 80 this September. But he is there alone, so I check on him a lot, and we take him with us a lot.

We help him with money where we can too.

Sometimes when I am not on here, I go to a board about sewing/quilting, that is like something that helps me with stresses, but nothing takes the place of how it feels to have everyone here to understand how we all feel.

Just wanted to say why I hadn't commented until now.
Hang in there girl, and you sure have some good input. You are at the right place.

susanep :)
Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Mobic, Prilosec,, Xanax, Restasis, Systane,Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventi

sass

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Re: New Topic: Information Update on Sass
« Reply #49 on: June 17, 2012, 08:43:54 AM »
okay, I have pulled it all back together now.  To those confused...I removed a post made by myself, I was tired and hurting and ranted,,,I should not have and I apologize.

I honestly don't mind opening my self up, I just don't ever want to cause a angry thought or ill wish.  I love you guys and the thought of provoking bad thoughts about anything is not what I am here for.

Alrighty now....Some very excellent thoughts and ideas.  IRish- You Rock, Gayle, Susan Raisin.....My Goodness, how can you take on the weight of another problem.  Sjogren's is enough.  I am strong!  I have Faith that God brought me to this and will get me through this.  You are part of that !  You are the part of what God is doing to get me through it. 

He has this lesson for me in order to help others.  I am ready and willing.  I have to find my way back to a church home, that he can use me. 

I am afraid I am not doing that by ranting about things that bother me, but hope that he uses that to let others see that this happens in all families.  That no one should be put on a podium. (I have done that too many times ) We all have faults and problems.  He is the only one on that podium and we should be at his feet.  "Life can be Sunshine and Roses, but only if you are willing to deal with the Storms and Thorns! "  haha, new quote by me!  lol....use it freely,lol! 

So like a cat, usually when I fall, I land on my feet.  It is just that spinning free fall that gets me sometimes.  It's not the fall that hurts you, It is that sudden stop at the end!  So, I was falling and God reached out (with all of you) and caught me before I had that sudden stop.

I wish I could go back and name each of you.  Everyone has added so much happiness and PURE JOY, to my life.  YES, EVERYONE!  MAY GOD BLESS YOU ALL!!

I look forward to coming here and reading your input, because each time I feel a building block for me to climb up on and go forth. 

Gayle, I am working on that book.  I have been so tired, I haven't gotten very far, but so far I am liking it...

Thank You for your help.  Iraisin, let me know about your research.   Gayle, I am making that list girl!  Susan, you are never a bit late, your timing is perfection.

If you get a chance, go to youtube and listen to a song by "Sidewalk Prophets" called "The words I would Say"      ~sass~
« Last Edit: June 17, 2012, 08:49:38 AM by sass »

eye2dry

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Re: New Topic: Information Update on Sass
« Reply #50 on: June 17, 2012, 08:54:56 AM »
Sass....I wish I could hug you in person.

I wish I lived close by and could help you........

I can't help but from here on this forum.

I will be following you here and as always will be hoping and praying for you.




eye2dry

quietdynamics

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Re: New Topic: Information Update on Sass
« Reply #51 on: June 17, 2012, 10:06:36 AM »
Sass ...

We are all hoping you are resting today. So perhaps Monday you can try:

 2-1-1 is a national database with free information about more than 5,000 health, community, and social services. So for you, your husband and your Dad, etc.  Some of the agency reps should be able to come to the home...Explain the oxygen, etc.

They do have a site online. But, when I used it I called and was surprised at the suggestions, which I would never have thought of, or heard of...so I think it is better to call. 

Call your med insurance and see if they cover the hotel stay and will provide transportation? Who reads to fine print? They cover ambulance, etc. These were specialized medically necessary services that were referred and not available locally. 

Monday your husband and Dad can do their own work:
Your husband can research this site  ;)  for help with meds costs.  Some, but not all are income based, some are coupons....let DH be part of the loop, maybe Dad can help. My Dad had Cadio bypasses and when he was in the donut his cardio gave him samples. So if that is where your dad is have  HIM/DAD  call and ask for samples, if not there may be a program from the Pharmaceutical that provides the meds. 
http://www.needymeds.org/drug_list.taf?_function=list&letter=L



« Last Edit: June 17, 2012, 01:09:06 PM by quietdynamics »
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

iraisin

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Re: New Topic: Information Update on Sass
« Reply #52 on: June 17, 2012, 12:28:54 PM »
We care very much for you Sass.

Ranting can be a healthy thing. I swear my mouth is more of a pressure relief valve than an orifice for nutrition. this place is freedom for us. Don't be afraid of that. Sometimes our rants expose issues that need to be met and just need some objective thought from those not deep in the situation and biased by deep emotions due to illness and/or circumstances.

Trust me, you guys will see it from me from time-to-time. I'll need you to help be get back on track and in a logical, less emotional frame of mind.

Quiet, you've done some research. I'm going to start creating a resource file - you're post will be in it. Thanks.

Gayle

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Re: New Topic: Information Update on Sass
« Reply #53 on: June 17, 2012, 02:36:58 PM »
SASS!!!!!

Okay, first, don't ever feel you need to apologize for ranting.. Otherwise none of us could and we all need to.

 Second, you make us all feel normal with your open ability!

Third, Keep the book moving forward.

Forth - I am waiting for the list to be worked on, let me know what I can do! If it were someone else on here needing a call made or just a hug, you know you would be in line!

I am ready! You're doing GREAT!!! Keep going forward with your expectations of miracles! They are ready to lay on you softly and boldly!

Gayle

sass

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Re: New Topic: Information Update on Sass
« Reply #54 on: June 17, 2012, 08:43:40 PM »
Gayle.

Have never had someone wanting to help do my phone errands.  I will have one for you tomorrow.  I read this too late and am tired.   


Gee, I feel strange to have someone there.

~sass~


Gayle

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Re: New Topic: Information Update on Sass
« Reply #55 on: June 18, 2012, 04:09:35 AM »
Morning Sass,

Silly Sass, I know it is strange but here I am. :)