Info on Funeral and visitation for Brayden

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Our little Brayden is resting in our Lord's arms.

And I know this in my heart. What a blessing Brayden has been to us. Still, my heart is broken. And I wonder, why with all my health issues, am I out-living my grandson. It doesn't seem fair at all. But my faith is strong, and I know the Lord only meant us to have him for just this short while. And I am comforted in knowing he was not in pain, and did not suffer. With his breathing difficulty, his little heart gave out. If you recall, He had open heart surgery and had two valves replaced, so I knew this would be an issue in the future.

His poor body just couldn't fight anymore. And I knew in my brain that the prognosis was not a good one for him to live a long healthy life, because of his chromosome disorder (charge syndrome) but it was my heart that couldn't accept that.  He is still my little angel, but now he has his wings. I was able to hold him for a long while and say goodbye. I traced my fingers along his face to memorize his features. And I cried. And I hugged and kissed him and told him to say hi to his great oma and opa (my parents) for me. And I told him that one day his Oma (me) will be there to hold him once again. And I prayed that the Lord will hold him for me until I can do it again.

Please pray for Joey. He is devastated. He was such a great dad. He loved his little man more than life itself. He was always taking care of Brayden. Always. Their home-care nurses always told me what a fantastic dad he is.

Tomorrow they will make the funeral arrangements. I worry how they'll pay for all the medical and funeral costs. And I think I will try to raise some money for them. I will get a large set of my candy wrapper sets I designed and offer them up for a donation. All money raised will go to paying medical and funeral costs. I will post more info tomorrow.

Please keep our family in your prayers.   XOXOXOXOX

New Addition to Our Fur Baby Family

His name is Bo and he is a Welsh Pembroke Corgi. He's a cutie, but a handful right now. He was an outside dog that spent his life in a small fenced kennel all by himself. Not a nice thing to do to a dog of his breed. They need to have room to run. After all, he was bred to be a herding dog! But the owner used  him to make money, and that's what a dog breeder does I suppose. But, I have always loved Corgis, and Greg knew I would love to own one. We have another dog as well, and Buddy is half corgi half rat terrier. So far, they are tolerating each other.The cats are tolerating him as well, however, he is not tolerating them very well. But, if he wants to be part of this household, he's gonna have to get over that. After all, the cats allow us to share their home. And if you are a cat parent, you know what I'm talking about.

So, we have had to step back the training a bit. Have to think of him as a puppy since he does not know how to behave indoors, and how to behave around other animals aside from the one he is breeding with. So I imagine another male dog AND 5 cats were alot to take in for him. So, we will do baby steps.

Greg called our vet and asked him if he knew of someone who might like Bo, as he is worried I might get hurt if I have to break up a fight or something, and he's worried about the kitties, but, I have thought about it and I really think we need to give him a chance. All of our other rescues came around, and the ones that didn't get along with our furbabies, we were able to find a home for with the help of our vet. So we'll see how it goes. :)

Have a wonderful weekend!  XOXOXOX

Sorry for the major vent yesterday.

Wow. That was quite the post, huh? That is why when I am feeling at my worst I stay away from writing. ;)  But I did feel much better afterwards, hehehe. ;)

This morning I went to see Diana, my primary care nurse practitioner. And we had a long discussion. About my falling down twice in one day and breaking the fall with my forehead, about my knee surgeries, etc. And here is what we have decided. I am to resume the lymph edema treatment, but this time it is with the goal of easing the pain and swelling in my legs, and not the goal of the surgeries. We have agreed that the surgery will most likely kill me. And so, that goal for the knee replacements is over with. And in a way, I feel relieved as the idea of having such a major surgery after the fiasco last year just scared me to death.

 Diana said to me " Marlene, one of the things you will have to come to grips with is the fact that you are a beautiful, wonderful person, and you still have alot to offer to people. Your legs are not Marlene. They are a component of Marlene, but not all of you. And there is so much of you to offer to your friends and family and it doesn't matter if your legs work or not." She said alot more and I fought tears and couldn't even look at Greg, cause I knew I'd lose it for sure. I understand what she is saying. Really I do. But I still struggle every day with my growing list of limitations. It's really hard to swallow and she knows that I have fought hard and long with my circulation issues and the arthritis. Being in a wheelchair just doesn't make me happy. But it will help my pain level and keep me from falling and cracking my skull! So, I promised Diana I will work on that. What a wonderful friend she is.

As she walked Greg and I out, she told me her new office doesn't have any CHRISTmas decor for this year. The doc that left the practice took it all. (Last year for CHRISTmas I gave her and the other gals in the office one of my pine cone trees, so she knows I do floral stuff) So I said, that I can do! So in a few days when the pain from the falls has eased a bit, I will work on a few trees, garlands, and swags for the office. It will feel good to get designing again. And I know very well that she did that on purpose to get my mind off our conversation about the surgery.

And so my fibrofriends and fellow chronic babes, I say to you- your illness is not who you are either. It is a part of you, but not all of you. You too have lots to offer the world. We all need to work on that. Let's do it together, shall we?  Love and gentle hugs.   M

How do you cope???

This question goes out to all my fibrofriends and other chronic babes. How do you cope when people don't get it? How do you cope when people don't understand that lots of days your pain is so bad that just moving to pick something up makes you want to cry???? Or getting in and out of a car a few times when you are in a flare is enough to put you in bed for 2 or 3 days???  And how do you get people to understand that when you have to say no to going to see your grandson, or for dinner, or shopping, or a party, it's because you are in pain and haven't slept for nearly a week, and not because you are making excuses??? And when and if they have told you that you are making excuses to get out of doing things, how did you handle it?

I know it's not nice to wish illness on anyone, but there are alot of days when I wish sometimes people who act like this could walk in my shoes for a month or two. Perhaps then, they would understand how hard it is to say no. That we cry when we can't see family and friends when we are invited. That we would like nothing more than to spend time doing fun things like we used to. I've been told that I have changed over the years. That's what chronic illness does. It changes us. We no longer can jump in a car for a quick shopping trip or visit. We have to conserve energy so that we can make a meal, or take a shower or do the dishes. We have to say no when we want to say yes. We can't be all about our grown children or spouses or girlfriends anymore. We can no longer take care of everyone else anymore, because we have to take care of ourselves. It has to be all about ourselves when we are chronically ill. We have to make sure that what we do doesn't make us more sick than we already are. We have to walk away from the bullshit that drains every drop of joy from us. If we don't, it consumes us. And then comes the flare! I always think a flare cannot get worse than the current one, but they do. Sometimes the pain is so intense that my words get slurred and I can't think straight. Some days I am so weak that I can hardly carry a cup of coffee let alone hold on to a 20+ pound baby. The last time I did, it was so hard I stiffened my arms to hold him as I was afraid to loosen my grip-and that- only that-holding my grandson put me in a worse flare because of what I had to do to my muscles to hold him. And I cried for days because I am so weak, I am afraid to hold him. Again, I ask you, how do YOU cope.

How do you cope when the doctors give you a choice of knee surgeries or wheelchair, but you can't have the surgery because the cardiologist didn't clear you, and neither will the other doctor because the lymph-edema in your legs has reached new highs- or when they say you need spine surgery because of the scoliosis and the ruptured/torn disks, but you are scared to death, so you suffer with the back pain and sleep in the chair many nights? How do you cope knowing you need these procedures done, and then your hiatal hernia is now so bad that your esophagus isn't closing and stomach acid is burning your throat and mouth and now you need surgery for that too? How do you cope with not being able to do things around the house without the fear of falling down and injuring yourself again? (yesterday I fell twice. Once because of knee, once I passed out and hit my head on the table leg- Greg was home) How do you all cope when you have this much on your plate, and people don't get it?

I really need some advice here. Really. I know I am not alone, as I have read many articles on some of the forums I am members of. But I would like advice from my friends that know and understand what it's like to be chronically ill. Tell me how you cope with all of this. Or, even if you are not ill, but understand the ones that are.

1st Treatment today!

Well, today was the 1st lymphedema treatment for both my legs. It feels very much like a Tens Unit does, but in a bigger scale. I have to go for 1 hour, 3 days a week for the next 9 weeks. Please please say a prayer for me that it helps get the fluid out of my legs. If it doesn't, the orthopedic doc will not do my knee replacements.

I am at a critical state as my knee on the right side keeps giving out causing me to fall. And with my osteoporsis, that is NOT a god thing. I fell a few days ago and hurt my right shoulder again. This is the same shoulder I had surgery on a few years ago and have a screw in. I see the orthopedic doc next week to see how bad I screwed it up. The really bad part is, now that my shoulder is in such bad shape, I cannot use my cane. UGH!!! 

This morning I had a really hard time in the shower and being stable I told Greg it's time to get a shower / tub seat. So my doc writes the prescription, and we go to the med supply store only to find out my insurance won't pay for it and it's $120.00 for the one to fit my tub. Their reason is a tub/shower seat is not considered medical equipment. But they will pay thousands of $$$ for an emergency room visit when I fall in the shower again like I did in december. Doesn't make much sense really. I also saw a walker at the med supply store that I thought would be better for me. It's the kind with a seat, so when I get tired or dizzy I can sit down. And the insurance will pay for the expensive walker. Go figure, they feel it's important for me to be mobile, but not important for me to take care of daily hygene. Something wrong with that picture!

But, I guess I really shouldn't complain as Humana has been very good to me over the past few years. And aside from a very expensive arthritis drug, this is the only other thing they wouldn't pay for. So if you are on medicare and looking into a medicare replacement policy I really suggest you look into Humana. I pay a bit extra each month for the policy I have, but it's worth every dime. ( I have the Humana Choice PPO policy)

I also got fitted for ankle braces today. With my knees being so unstable my ankles are giving me trouble. They cast my feet and ankles, and the braces will be specially made for me. They will be made out of leather and will be able to fit in my shoes, so since I live in pants/jeans, no one will be able to see them. I like that! :)

The arthritis is starting to deform my feet as well, and doc said I will probably have to look into specially made shoes. She gave me a catalog and I was shocked! They are really nice-normal looking shoes! But hopefully I can wait a while with those....

So I bored you enough with my med update, so I'll sign off for now. Wanna bake some brownies to take to doc's office tomorrow. Have a great day, and stay cool! ;)

Happy Monday everyone!

I was struggling about a phone call I knew I needed to make today. It is the one year anniversary of our dear friend Mary's death, and I needed to call George (her husband) and check on him and see how he is. He puts on a good front most days, but I knew today would be tough for him. Greg talks to him often, but I don't see him much. I was dreading the call. Mary was so good to me and treated me like a daughter. And Papa George is family to us. So instead of stressing I just made the call. And I am so glad I did. We had a long conversation and he is doing better than I expected today. He spoke alot about Greg as they have known each other for a long time. Over 20 years. And Papa George is thrilled that we are getting married. He has promised he will come for dinner and visit our kitties (they adore him), and I look forward to that.

Greg just arrived home. Strange for him to come at lunch time. He has shut down for today, and sent his help home. The cedar mill is closed because of the heat, so Greg will not be taking a load to the mill tomorrow as planned. It is 100 degrees now at 12:10 pm and heat index is 108. Way too hot to be working outside and wrestling with trees and logs. He is exhausted and over-heated, and I'm so thrilled he has come home early and not pushed himself as he is known to do.

He brought home a yummy surprise for me. 12 bottles of DaVinci Syrups. If you love coffee, you know DaVinci. Coffee shops put these syrups in the coffee to flavor them. Now, I have seen the small bottle for sale at close to 9.00 each. These are the 25 oz bottles. And he bought them for 3.54 each. We have a salvage grocery store here in town and we love it. They get stuff that is a little outdated, or maybe a few cans in the case were dented so the whole case gets marked down really low. Many things are imported stuff from Europe, and I love that. But you have to stock up when they have it as they rarely get the same thing in twice. Anyway, a couple weeks ago they had Irish Cream and English Toffee and I picked up those. Then they had blackberry, mango, orange, strawberry, and cinnamon. I tried some of the blackberry in my iced tea and wow it was yummy. So, Greg bought all they had. Then I tried some mango and it was yummy in my tea as well. So, Greg bought 9 bottles (all that they had left) of the mango one cinnamon, one strawberry syrup and one orange to try. I was thinking combining the strawberry and the mango together would be yummy in iced tea. But strawberry added to hot chocolate or even cinnamon added to hot chocolate would be awesome. Adding the strawberry may remind me of chocolate covered strawberries. Mmmmmmmmm.
Would like to try them in baking or in my candy making as well. I will let you know how my experiments turn out. ;0)

My sweetie spoils me, doesn't he? So, I have lots of yummy syrups for coffee or tea for my friends and family when they visit. :)  The tea is brewed and chilling, and the coffee pot is on, so c'mon over!

I have been busy working on Christmas projects that will go up on Etsy and Artfire soon. I have gravitated back to floral/natural designing which is my first love. I am still designing craft printables, but I have lost interest at the moment. I HATE loading the files to my website as it is quite the project to get my mind around when fibrofog is telling me yeah right! You want to do what???? I like the designing part. I HATE
the website stuff. I have a website for the floral stuff as well, but what a pain in the ass that is too. I'm thinking I need to look into a different program aside from Zencart. But until then, I will be using other ways to sell (hopefully) my wares. I'll be posting photos soon. Let me know what you think please! Now I have got to get my but in my craft room and get some stuff done. Have a happy day!  Love and xoxoxoxo   M