-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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payne
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posted
Lamentations 3:22-23
The steadfast love of the Lord never ceases;
his mercies never come to an end;
they are new every morning;
great is your faithfulness.
Sammy Recieve !
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
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Dekrator48
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posted
Prayers for you and your Mom, sammy.
May you feel the absolute love, comfort, peace and hope of God as we celebrate the birth of our Saviour, Jesus Christ this week.
Big hugs!!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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sammy
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posted
Merry Christmas friends!
Last week was busy for us. Mom saw her oncologist and her surgeon.
She has neuroendocrine pancreatic cancer stage 2b. It does not respond well to chemo so must be surgically removed for best survival chances.
Mom needs another test to see if a spot on her liver is cancer too. She will have a filter put in before surgery to prevent blood clots from traveling from her legs to her lungs.
The surgery will be ASAP in Jan. it will be extensive as they have to remove a large portion of the tail of her pancreas, her spleen, and her lymph nodes. She will be in the hospital for several days (5-7).
Surgery is extra risky as she still has the pulmonary embolisms and the clotting disorder along with an atrial aneurism.
It all feels overwhelming to think about. I'm not doing well trusting others to care for my mom. She's my best friend.
I'm also worried that I will not be able to take good enough care of her afterwards as I can barely care for myself. I'm trying to have faith.
Thank you friends for sticking with me through this. It means the world to me.
Bless you!!!
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randibear
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Sammy. Please know I am thinking and praying for both of you. If there is anything you need please let me know.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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momindeep
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Thanks for taking the time to bring us up to speed Sammy.Our prayers continue for you sweet girl...and your mom too. Sounds like she is getting sterling care.
Hope your mind and body can rest...just know we are all here for you. Hope that Christ's birth gently reminds you just how much you mean to Him.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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Sammi
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posted
sammy, I am praying that the cancer has not spread and that your mom's surgery and recovery go well.
You must be so exhausted and worried. Please know that we all continue to pray for you and your mom. Do you have friends who could help you out with her care?
Your mom is very lucky to have your support.
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Dogsandcats
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It is so important to have someone helping with your care when ill. Your Mom is so blessed to have you at her side.
How precious to have each other's as BFF's!
I will be praying for God's healing hand upon both of you.
Enjoy the time together tomorrow!
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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lax mom
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Thinking of your mom and of you, Sammy. Love and healing wishes for your mom's surgery. Posts: 431 | From New England | Registered: Dec 2011
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posted
Sammy... if she has to have pancreatic cancer, that is the BEST kind to have!!! The survival rate is VERY GOOD!
I have a friend who had that surgery 17 yrs ago and is doing well. She takes really good care of herself.
I have another friend who just went thru the surgery less than 2 months ago. She's doing well!
I hope that gives you HOPE!!!
I prayed for you tonight at church and I pray for you and your mom every chance I get!! TAKE CARE and keep up the hope!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Rumigirl
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posted
sammy, I'm so glad to finally have an update again.
Lymetoo, that is very hopeful!
sammy, can your sister come and help out some? I know she has her baby/toddler to care for, and she lives at a distance. But it sounds like she will really be needed, unless there is someone from church, or someone else who can help out.
I pray that the tests and the surgery go really well, and that you have more answers soon, too.
Please, please find someone to help besides yourself. YOU need care, too! Don't let your own care go down while taking care of your mom.
Have a blessed Christmas with your dear mom. This is precious time together.
Posts: 3792 | From around | Registered: Mar 2008
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dbpei
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posted
Please be good to yourself in any way you can at this difficult time. Reaching out to your sister sounds like a good idea.
Have a blessed and peaceful Christmas with your beloved mother.
Sending prayers and hugs for successful surgery and good recovery, Sammy. Posts: 2387 | From New England | Registered: Aug 2011
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Dekrator48
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posted
Praying for you and your Mom for a good surgery outcome, long and healthy lives, strength, and total peace.
Love to you!!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Sammi
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Lymetoo, thank you SO much for sharing this! It gives great hope!
I am happy your friends are doing well.
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Ellen101
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sammy
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posted
Sadly, my sister does not want to be involved. She has her own life now. (She stays home and takes care of the baby).
When my mom was in the hospital with the pulmonary embolisms, she called my sister, asking them to please come with the baby (16mo) to visit. Mom was very scared and didn't know if she was going to make it through at that point because her diagnosis was life threatening.
My sister simply said "no".
She never comes to visit us. If we want to see her and the baby, we have to go there. She knows we will come. Which she also knows is exhausting for me.
At Christmas, they did not ask either of us how we are doing, or what's going on, or if we needed help, or prayer, or anything.
They talked in great length about how they are helping a friend who had a baby, bringing her meals and stuff. That they've been taking care of some children of a family whose husband had a concussion and is now possibly being diagnosed with cancer. How horrible that is!!!
And yet, no comfort for my mom going through the very thing that they fear for their church friend. It's like they are blind. I wanted to shake them.
I don't know what my sister is thinking but it breaks my heart. She didn't want to spend time with us and it was clear. She just wanted presents and she wanted her Christmas obligation to be over.
It breaks my heart because I don't know how to fix it. I love her terribly.
Posts: 5237 | From here | Registered: Nov 2007
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randibear
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posted
Sammy. I dont know if you read my post about my family but my two sisters are having to live with their regrets. They never visited mom or did anything for her. I would fly up from texas which isnt cheap and take care of her.
My advice...leave your sister to her life. You have enough on your plate. Obviously she doesnt care.
But one day she will and it will be too late.
Cruel I know but you need to concentrate on your mom.
I wish you much love and support. Believe me ive been there.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Sammi
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posted
sammy, it is heartbreaking the way your sister is acting and very hard to understand. It is sad, but right now you and your mom need positive support.
Do you have any friends, other family members, or people from church who could help out? Do you know if there are any cancer support groups in the area? These are usually great places for help of all kinds.
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Dekrator48
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posted
sammy,
I understand family issues all too well and how we would like to fix them, but we can't.
We should pray unceasingly and allow God to work.
He is the only one who can change people.
As Sammi wrote above, it would be good to look into caring community members who would be willing to help you and your Mom in any possible way.
Continuing to pray for you, your Mom and also your sister.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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poppy
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posted
Sorry about your sister. Don't know if it is any comfort, but this is not rare. Relatives go off on foreign mission trips, but can't inquire about illnesses in their own kin. Inventing things to be mad about so as to create distance, and no obligation to care about sick relatives. Taking care of in laws, friends, ignoring kin. The list goes on and on. If you go to support group meetings, you might hear a few stories, but most patients are embarrassed to admit their families won't help. People might think it was their own fault. That is, people who don't have lyme. We do understand, however.
Makes a person very disillusioned about human nature.
Posts: 2888 | From USA | Registered: Mar 2004
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Rumigirl
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Oh, sammy, this is heart-breaking on top of everything else!!! I know how much your sister and niece have meant to you. What a slap in the face.
I've been through the same thing personally with my brothers. They can't be bothered to ask how I am, reach out to me, care anything about what I am going through, etc. This has been true my entire adult life.
People, family especially, often act out in their own selfish, uncomprehending ways, that are unbelievably difficult to understand and endure.
I am so sorry to hear about this cruel situation on top of everything else both you and your mom are enduring.
For now, if I were you, I would ignore your sister, as you have enough to do to be there for your mom and yourself.
But please, please reach out to friends, church members, support groups, anywhere else you can find. Also, look into whether a nurse, social worker, etc. can be paid for by Medicare or insurance, Medicaid, whatever. You are not made of steel!! Far from it.
Please don't let your own care go down in this most difficult situation. It is really heart-breaking. As if you haven't had enough heart-break already.
I wish that I had the power to come there and do something myself. Since I can't, what I can do is send love and prayers.
And if you can ask any church members support group members, etc. to help to figure out if some help can be covered or volunteered, please do so. You can only do so much, before you break yourself.
Love and prayers to both of you. May God's love surround and comfort both of you in your time of need.
Posts: 3792 | From around | Registered: Mar 2008
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momindeep
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Sammy...I will ask the Lord to send you some reliable help that you are comfortable with.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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momindeep
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Still praying.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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Dekrator48
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posted
Also still praying,sammy.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Sammi
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posted
Me too sammy.
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2roads
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posted
Sammy, praying here in Indiana for you and your family.
God is in control. Everyday I remind myself of that too.
No matter what happens, he will not fail us.
Peace, Wisdom and Strength-
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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randibear
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posted
Sammy am hoping that 2014 will bring the Lords blessing for you and your mother.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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sammy
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posted
** Update 1/7/14 **
Thank you for all of your prayers and ideas expressed here. Everything is greatly appreciated.
Right after the holidays we struggled with an upper respiratory infection that was stressful and a setback in terms of getting things done. I still feel beat and am needing naps daily.
At one point, a few things in the house needed done and my mom expressed to me her fears that I am not going to be able to take care of her after the surgery. Basically she had a panic attack and I could not even calm her down. I felt so bad, so inadequate.
I'll be honest, it's going to be hard. We will need God's grace to get by but I know that we will. The house will not be perfect, we may not eat glamorous meals, but my mom will be cared for. That is what matters.
I just learned today that my IVIG has been denied. Last year when I had to go off of it for testing I was bedridden for the 6mo due to constant infections. I need to trust and pray that God will provide for us this time around knowing how much I need it due to my severe immune deficiency.
I cannot allow myself to think about the alternative that if I do not get my IVIG approved this week, I will not be well enough to care for my mom. And I am no longer on IV antibiotics, I am on orals only.
So, today and tomorrow my mom has a special nuclear med test to see if the cancer has spread anywhere else like the liver. Please pray that it will not spread but if it has already that they will find it so that it can be taken out during surgery.
Mom's surgery is scheduled for January 23rd at 8:30am, her surgeon is Dr. Ouellette.
Thank you all for walking with us through this. *Hugs*
Posts: 5237 | From here | Registered: Nov 2007
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randibear
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posted
Sammy bless your heart. How in home care like a nurse to come in or something?
Are you doing ok for money? Need gift cards or something??
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Sammi
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posted
sammy, I cannot believe that with everything you have going on that your IVIG was denied again! You need this more than anyone I know. What reason did they give? What recourse do you have? The timing could not be any worse. I am so sorry.
Do you have any other family members, people from church, or friends who could help out? You cannot do this alone. Do you know if there are cancer support groups in your area? These support groups can provide rides to and from treatment and may be able to help with a lot of other things also.
sammy, if I can help by researching support groups for you or do anything else at all, please let me know. You have so much on your plate right now, and you need help.
I am praying that your IVIG is approved immediately, that your mom's cancer has not spread, and that her surgery is a complete success. I am also praying for strength for you and your mom during this difficult time.
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Dekrator48
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posted
So sorry, sammy, for all that you and your Mom are going through.
I am praying fervently for both of you, and trusting that God will provide all that you both need.
Also trusting that you both will get all the treatments you need and will be healed.
Love and hugs!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Dogsandcats
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posted
Bless your heart Sammy. You have had enough challenges for a lifetime.
Please let us know if there is anything we can do to help.
Will continue to lift you and your mom up in prayer.
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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susank
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posted
Oh Sammy. I pray for you and your mom daily.
Who has denied your IVIG? Medicare? A Medicare Advantage plan?
On what basis? You are awaiting some kind of approval this week?? You have appealed?
When was your last treatment?
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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sammy
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posted
I was wondering why it was so cold in the house yesterday...
The furnace quit working! The warmest it got was -15 wind chill outside!!! So my mom came home from her tests and said that it was almost as cold inside as it was outside
We had Duke energy come to make sure that our gas had enough power to make the flame (not sure if I am explaining the technical correctly here). Everything was OK so we had to wait for our neighbor to get off work before he could come fix our furnace.
Thank God our heat was restored last night!!!
So mom proceeds to tell me that she'd been feeling short of breath all day, chest heavy, and like her heart was racing. She didn't know if it was stress or symptoms of more clots and had considered going to the ER earlier...
This was like 9pm. So now I'm worried. She didn't want to go to the ER so I tried to get her to relax and we watched a couple funny shows together. She said she felt a little better before going to bed.
She's going to have the neighbor check her blood sugar if she still feels bad this afternoon because she thinks that maybe her pancreas is making her sugars imbalanced.
So please pray that she will feel better and that things will calm down so that she will have less stress. She's having a hard time coping. Anyone in her situation would.
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sammy
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About the IVIG...
I just got a call from my doctor's office. They did a doctor to doctor appeal over the phone today. Thank God our request for IVIG was approved!!! What a huge blessing!
I was in such a huge state of shock that it was denied since yesterday. I called the office and did everything that I needed to do and have been trusting that God would take care of it. It was way out of my hands to handle this.
The nurse was so nice, she has no idea how important this coverage was to me. This means that I can care for my mom. Or really, I can care for my mom without losing my life.
What a relief and huge weight off my shoulders.
Thank you all for praying this through. You are carrying us.
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randibear
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posted
Sammy what hospital are you going to? Im familar with all of them. Stay away from good sam. Ketterin is fabulous and so is the new one in beavercreek. Greene memorial is ok so is miami valley.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Prayers answered. Will keep praying and trusting our Lord to work everything out.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Dogsandcats
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posted
Thank you keeping us updated! It is so exciting when the Lord's handiwork can be seen-Praise God! Glad your furnace is working and you had a neighbor who could help!
Now- keep praying your IV will go well and your mom will get better. May God continue to bless you with strength and endurance.
WOOF!
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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Sammi
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posted
quote:Originally posted by sammy: About the IVIG...
I just got a call from my doctor's office. They did a doctor to doctor appeal over the phone today. Thank God our request for IVIG was approved!!! What a huge blessing!
sammy, what a huge blessing indeed! I am SO happy for you!
With your mom's clotting history, she should go to the ER when she has these symptoms. Prayers continue for you and your mom.
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map1131
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posted
Wow, great news on your side sammy. Now get mom to accept help and not let symptoms go for too long before going to dr office or ER.
Sometimes we know we've worked ourselves in a tizzy and caused anxiety sx in our bodies. I hope mom knows there is a difference and when there is a difference.
When your body speaks...listen. Lyme patients become experts on waiting to see if this symptom too shall pass. If we went every time there was a change in our bodies, we'd live in doc office or ER.
We try to avoid stupid questions from non-lyme docs at all costs.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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Rumigirl
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posted
OMG, sammy, I just saw the new posts. Thank God that your IVIG was approved!!! That is essential.
Please, please see about getting a visiting nurse/aide to help your mom after surgery. NOt that you won't help her, but to help you to help her without you going down with the ship.
If that isn't possible, please do let someone help you to find volunteers to help out. YOu can only do so much without jeopardizing your own health.
And please take your mom to the ER if necessary. I hear that it is hard to tell what is anxiety, and what is a clotting problem. It sounds like she could use anti-anxiety meds to get her through this terribly stressful time.
I pray that the tests show that the cancer has not spread.
I'm sending love and prayers to both of you.
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Rumigirl
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sammy, I'm thinking about you both, as I'm sure many of us are. How are things progressing?
Please do get help, so it isn't only you supporting your mom after her surgery.
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sammy
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posted
**Update 1/14**
Thank you all for your continued love and prayers
I spoke with my mom last night about when she will be coming home after surgery and what she will be expecting.
Basically, she does not want any outside help like a home care nurse. She thinks that we will be fine on our own, just the 2 of us.
I asked her if any of her close friends or the church had offered to make meals or do anything during that week to help out and she said "no" that "we'll be fine."
She said that she'll get some freezer dinners that I can pop in easily. And I can ask the neighbor to make something one day, she's very nice and is always willing to help.
A good friend of mine (My only non-lyme friend) has offered to help with a meal but she lives over an hour away from my house so that is hard when she works long hours every day. Her parents may help out with one too?
I've kinda been waiting for people to step up and ask but no one is. It's like they don't realize the gravity, the severity of this surgery and how sick I am to have to care for my mom afterwards...
The pastor (and maybe his wife?) is going to come over to our house to talk sometime this week. I think that will be good for my mom. To help her cope with some things before surgery.
By God's grace, we'll get through this together. If mom can be strong and make it through the surgery then I ask for God's strength and endurance to help me care for her as she heals afterward.
Thank you for continuing to pray for us both. I am still in shock that this situation is really real. Having a hard time coping with it myself so I know my mom is too.
I'm also sick right now, upper respiratory + sinus symptoms, seem to be getting worse instead of better. Please pray with me that my body can fight it off without having to go to the doctor for antibiotics.
*Hugs*
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Sammi
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posted
sammy, I continue to pray for you and your mom as I am sure everyone here also continues to pray. I am sure you are completely exhausted in every way.
I am glad your pastor will be visiting. Is there any way you could speak with him about your concerns (even if it is before he visits)? Maybe when he knows the situation he can rally volunteers.
I just think it is a lot for you to do alone when you are so sick. If people know you need help, they will want to help. Your mom should not feel like it is a burden to have people help. Maybe she would reconsider if you tell her that having help would also help you?
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momindeep
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posted
I pray for you everyday...I agree with sammi...tell your pastor the deal...sometimes people just don't realize and if mentioned turns things around...there is no shame asking people for help...none at all.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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posted
PLEASE ask your church for help!! They sometimes don't know you need help unless you ask. They know people are "proud" (sounds like your mama) and may not want to push it.
So .. let the minister know you could use help. I'm sure he will ask about that when he comes to see you.
Praying for you daily.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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