Changes I'm Making

[LadyCarrie]

I'm thankful you were able to have all those tests also, Kay. You definitely needed to have that baseline.

I've thought often since Jerry became so sick in 2013 that I'm glad he had the tests and all the care needed before the laws changed. The hospital had begun to get set up for the changes just as he was being discharged. As a result, we received a huge bill that we were to pay as our part, because of the new laws.

Jerry and I didn't know anything about laws (he was just trying to survive), so we prepared to pay what we were told we owed. Amberly looked at the statement, and said basically, "Whoa up and wait a minute here. Not so fast. You don't owe this." She called the hospital, and said as much, nicely, of course, to the person who answered. The person she talked with explained the new law to Amberly. Amberly told her that the law did not apply yet, and that if she used a particular code number, the hospital would be paid in full. The person said that she could see that, and thanked Amberly for pointing that code out to her. Amberly used to do medical billing. Whew! That was close. She said this often happens to unsuspecting people, and that the elderly are the ones most apt to just pay whatever they're told they owe. We would have done just that, for we thought we owed it. From this, we learned that if the hospital and some doctors' offices can get the patient to pay, they get the full amount charged rather than what an insurance company will pay for the same service. We surely are glad we sent that girl to school!

Carrie

[enna]

I just want to acknowledge your post and thank you and Amberly for the information you gave me, Carrie. I do agree with Amberly that when we are dealing with specialists they are very slow to make any comments until they get all the facts. As hard as it is for the patient to wait I do understand. We would be so quick to condemn if what was said in a hurry was inaccurate. I have been told that it is necessary for me to continue the Cipro even though I worry about taking antibiotics this long. Even my urologist isn’t sure what is going on at this time. I guess by process of elimination we will get a diagnosis.

Once my neurologist explained to me that the tests they ordered all have to do with the symptoms going on, I could see the need to follow through. I am fortunate that they are communicating with each other. The MRI scheduled for next week is part of the reason I had the brain MRI and the biopsies. Somewhere along my spinal column is the answer!

So many people are experiencing difficulty with insurance companies today. I have not had a problem yet, but I am also paying dearly for my secondary insurance!

I do not understand the logic behind scheduling only one test at a time.

I love Corrie ten Boom’s quote, "Worry does not empty tomorrow of its sorrow. It empties today of its strength.” How true. I’m about as good at not worrying as I am at not eating chocolate.

Thank you for your kindness. We are so lucky to have such a caring place to come to. And I do agree with Kay that it is good we have a baseline to go on.

Anne

[kayc]

Well if they only tend to one thing at a time, they get more copays out of us, less for the insurance to pay!

[enna]

I went to bed early and now am awake for awhile. I do this more often than not since Jim died. One the 25th it will be thirty-four months since he left this earth. In one breath, it seems like yesterday and then again it seems like forever! I miss him every day. I am in a better place than I was early on in my grief. Grief indeed does change us.

[kayc]

Just this morning I had to deal with the feelings of George leaving me...as if it was a choice he made! It goes to show we're never quite done with this and at any given moment we have to deal with it again. Yes, like days when we want to share something with them. Hugs to you, Anne!

[Queeniemary]

Oh Anne, sending you many many hugs. It just sounds like a roller coaster that you are on concerning all the tests. It does sound to me like your doctor's are at least somewhat working together. I know you are so tired of all this. The amazing thing to me is your humor that still rears it wonderful head, even in the midst of all this. I am not on here as often right now, so much going on, no excuse, just life. However, you are always in my mind and in my heart! I love the pictures of AZ that you post on FB, makes me long to be there. We had storms, tornado warning, etc last night...all we really got was hail...afraid to look at my car..is always parked outside! Sassy and I even went to the basement for a bit. I love the thunder, however. Anne, carrying you in my heart always. Have you had the MRI scheduled for this week yet?

QMary

[kayc]

QMary,

I bet Sassy is glad that is over! Dogs do NOT like thunder, hail. At least she had her mommy with her!

Anne,

Thinking of you and wondering how you're doing. I spent ten hours in the kitchen yesterday, food preparation. I find the key to healthy eating/dieting is having the right things on hand. After ten hours on a marble floor, I was beat last night!

[Queeniemary]

Kay, you are right, the way to healthy eating/dieting is having the right foods on hand. I am following the "full plate" diet, which is basically a fiber rich diet. I eat lots of sweet potatoes!! They are a super fiber food. I have lost only 9 pounds on this, since Jan. 26, but that is 9 pounds I have not gained, and I am very rarely hungry. Eat lots of beans too (much fiber), sometimes I may not be pleasant to be around. I am partly doing this to lose weight, and partly because my doctor says I must have more fiber due to the polyps found on colonoscopy in January. I have another one in July....sigh.

Anne, thinking of you,

QMary

[kayc]

I eat vegetable, vegetables, vegetables! I eat beans and peanut butter too, not much meat. I have gout and you aren't supposed to eat red meat and beans. But I have to have some protein! I'm allergic to fish so mostly I have chicken or beans, moderate amounts. I find variety is key too, I eat an egg once a week in addition to what I cook with...I find a dozen eggs lasts me a month, easily. I have lots of greens but find it helps to have all colors vegetables. I also have two servings of fruit a day, yogurt, and Dave's Killer Bread (lots of whole grains, seeds, organic). I try to stay low carb, low fat, 18-25 grams of fat per day. My blood sugar is better than it's been in years! I can't wait to see my next A1C! I would think my cholesterol would be better too but I know it doesn't work like that, it adjusts itself so with my genetics it could still be high, in spite of how I'm eating.

You're losing a pound a week, which is good! I'm down 33 lbs, but it's slowed down to about 1/4-1/2 lb./wk. That's painstakingly slow, being as I would still like to lose another 27 lbs. but it will be what it will be, I will keep being faithful to healthy living.

I'm sorry you have to go through another colonoscopy so soon. I didn't mind the colonoscopy but I hated the preparation! I drank that nasty stuff they make you drink to the point of vomiting! It is ridiculous trying to get that much down in that short a time. Their amounts and directions are the same for a tiny woman as a 400 lb. man! I find that ludicrous! Good luck with your next one, I hope it's polyp free. I know I had one borderline sized one, can't remember if it was one or two.

[enna]

What we are doing in our pursuit of Living with Loss ~

Mourning is a learning process.

[Wifflesnook]

That sums it up, Anne

[kayc]

For me I answer that question by trying to take care of myself, value myself, be kind to myself, and try to find purpose in life...that has been the toughest one. I've worked on trying to make a life for myself that is tolerable and has bits of joy or good in it. In the early days I hated the word "acceptance". I heard a lot about it but didn't understand how I could "accept" what happened, I couldn't wrap my head around it. I finally realized acceptance is a realization of what has happened, we have to process it, it takes time to do that. We have to process all that that means to our world, and that takes even longer. It doesn't mean we have to like it. It doesn't mean we agree with it or wish it happened, that'd be ludicrous! But acceptance as I came to realize it seemed to be one of the first steps towards living with this loss.

[Wifflesnook]

It's a lovely morning here in England and I dreamed of Pete last night, one of those weird dreams where we have a row about something small but when I woke it was unresolved. Still good to dream about him nevertheless. I opened my eyes and thought about my plans for the day. I thought that I had things to do. That I wasn't ready to die yet (neither was Pete as he was so active and full of enthusiasm for life when the stroke struck him down). But I thought Jan you have things you want to complete and indeed some you want to start. You need to use the time you have left. You are needed by your daughter and her littlies. So onward and upward. Sounds so positive doesn't it? But it sits upon a ground of deep deep sadness and longing for my beloved Pete. Life is so different now he isn't near me. No Kay I don't like acceptance either, but,like you I suppose I have accepted my life now has to be lived alongside the loss.

[feralfae]

Somewhere, I read the term "reconciliation" applied to the grief process. We slowly reconcile to (understand) the reality of our present lives. We adjust. We adapt. I think enthusiasm and inspiration will come, but patience is necessary to survive and to learn to carry this loss with balance and grace. In my mind's eye, I can see a dancer, jumping and leaping, and occasionally, a weight is added to one of her arms or legs, but she adjusts and keeps on dancing. A much heavier weight is added to her shoulders, heart, head, and entire body. At the same time, she feels an emptiness within her center of being.

It takes a long time to adjust to this much change. Not to "get over" it, but to live with it and still find a way to embrace life and open our hearts to the beauty and energy of life again. And I think it will simply take as long as it takes.

I made a mistake and had some caffeine coffee at noon, and so although I must get up early to be a birding guide, I am not at all sleepy. So I will wander over and natter a while.

But Anne, thank you for those wise words. They sum up where I am most succinctly.

*<twinkles>*

fae

[enna]

This is a shout out for all who acknowledge the pain each one of us who come here are in and especially to Kay.

Hi Kay,

I would just like to take a minute and thank you for all you do here on our forum. Your wise wisdom and comforting words are always present here helping all of us as we move through our grief journeys.

There are times when we come here and all we can do is read and so many of us are encouraged by your constant presence.

From the beginning of my grief journey, I have always said that it was important to me to have my journey validated. It has been for me. I wish there were words to pass on to those who are new and let them know that the deep pain they are in will not always be this strong. Yes, we will always miss those we love, but those of us who have been here for a while are proof that we do survive.

I am amazed at how generous everyone is as they acknowledge the pain of others while in their own sadness.

If there was ever a reason needed to keep this forum going this is it.

Anne

[MartyT]

♥

[kayc]

♥

[Queeniemary]

Yes Anne, agreed!

[Wifflesnook]

Yes, validated is just the right word. As we pass through our lives surrounded by people who don't have a clue what it's like to lose the person who was the centre of our world it's good to be able to come here and know that we will be understood. And Kay is our matriarch (not to say you are old, Kay, just wise)

[feralfae]

Agreed.

We are so fortunate to have each other to be our compassionate mirrors and caring listeners.

fae

[kayc]

[enna]

A few have been asking about my health in different threads and I will share with you what I know at this time. Anyone who has gone through many tests will understand my frustration with our medical field.

This health journey I’ve been on since October has just about brought me to my wits end! I am seeing four specialists at the present time. They are in communication with one another ~ I think. I began this journey when I started to have back pain to where I needed both a walker and a cane in the house as well as out. After seeing a neurologist, a spine surgeon, a urologist, and my heart doctor I am still undergoing tests. They are looking for the cause of a few things that are going on in my 72 year young body. I have had over twenty-four (I lost count) Physical Therapy sessions since October and some of the pain has dissipated to the point where I no longer use a walker and only use my cane when I’m out. My angry bladder (as the urologist called it) has become less angry but I’m still on Cipro and the issue has not been resolved as yet. After two cystoscopies and biopsies, I have one more test on Friday (What would have been Jim’s birthday) with the urologist. They are closed lips about telling me anything until all tests are in. I sort of understand this, but it would help my psychic if they would tell me something! Today, I head to Valley Radiology for the two MRIs on the spine they will be doing ~ cervical and thoracic sections with and without contrast (dye that lights things up). I think they are zeroing in on signals sent from either the brain or the thoracic section of the spine that are not reaching sections of this marvelous body of ours!

After these last tests, I am going to push hard for some information from all of these knowledgeable doctors! I’m at the point where I’m ready to say, “Body, heal yourself.” I did it with my heart so why not everything else. There have been times when I feel like I am my own doctor.

I’ve talked to my son-in-law who is an OBGYN surgeon and he told me that when dealing with specialists they want to wait until all tests are completed so they don’t give the patient false hope or scare them into thinking the worst. To me, it’s like saying they just don’t know what’s going on.

Next week I see my neurologist and my Primary doctor for test results on the last tests I will have completed. Then I’m done(cooked) finished!

I'm off to having pictures taken with my favorite radiologist! I have to remember not to think of Jim because then I start crying.

[feralfae]

Dearest Anne,
I can hear the frustration as well as the patience in your words.
I hope you have answers soon!

{{{{{{{{{HUGS}}}}}}}}} and

*<fairy dust>* in huge, heaping measures.

namaste
fae

[MartyT]

Oh my dear Anne, I can only imagine your frustration. While I understand completely the physicians' need to wait until all results are in before offering their considered and professional opinion, it also seems to me that a doctor's care ought to be tailored to the needs of the patient. You are one of those patients (as am I) who wants and needs to know what is going on and where you stand. When I go in for a diagnostic test, I want the results immediately if not sooner. After all, you are making the effort to get yourself to all these testing centers, and you (or your insurance company) are paying to get the tests completed. You do have a right to know the results ASAP, whether those results are inconclusive or not. (Have you read about the Gimme My Damn Data movement?!) I am so sorry to think that you are being put through all of this

[Here "e-patient Dave" covers] not just the cancer story but a broader review of what “e-patient” is about, the opportunity to transform healthcare through participatory medicine and through IT, and the sorry state of affairs we face today regarding patients’ access to their data. (Whose data is it, anyway?) Gimme my damn data, so I can help! http://www.medicine20congress.com/ocs/index.php/med/med2014/podcast/media/267/267-72-1-SP.m4v

[Wifflesnook]

Anne, thank you for the update, though for those of us who have learnt to love you, it doesn't make happy reading. You are in a no man's land and it must be awful, and, as we know, without your beloved Jim going with you to appointments, being there to off load one, hugging you. Oh Anne I so hope you will get news that will help your indomitable spirit to help to heal yourself.

And having an appointment on Jim's birthday too? All I can say is I hope you can feel him near you. What a lucky man Jim was (and is) to have you for his wife! Everything I've heard tells me that he knew it. And we are fortunate to have you amongst us, and we will be near you on Friday (somehow).