sunflowery's Diaryland Diary


Moving On

I'm so glad it's Saturday. Not much is planned for this weekend. Mostly hanging out, some grocery shopping, maybe a bike ride, and some DVD watching. Oh, also, tomorrow we are having to be at church because it's our Sunday for alter team.

The other day I was flipping channels and stopped on VH1. They were doing a show about Hulk Hogan's daughter, Brooke, launching her own music career. It was kind of a cute little show. Brooke is 15 but looks 25 and looks exactally like her mom. What was cute was to see Hulk Hogan when Brooke performed. He would get all teary and would mist up and cry with joy for her. Nothing melts my heart faster than watching a daddy fall in love with his daughter. So cute! But Hulk was also fiercely protective of Brooke and that was endearing as well. Any boy that got within 5 feet of her was met with, "You know she's 15 right? RIGHT?" Hee.

My brother and his family are in California right now. My oldest nephew Pete was so excited. I called him the evening before they left and he was wound tighter than any watch. "This will be my first time on a plane, in California, at the ocean, at Disneyland, camping, waterskiing, and seeing famous people. I can't wait!" Then he made me promise that I would set a date to come and visit him and his family in September. I can't wait.

Yesterday at work the receptionist asked me if I'd been losing weight. I'm not sure where she's been, but I told her I had had the gastric bypass surgery in May, so yes, I have been losing weight. She said she had been considering it, but was scared to death of the surgery so she's been trying to live life as though she had had the surgery. She asked me how much food I eat a day and I said I eat 3 meals per day and at each meal, I eat 2 -3 tablespoons of food tops. Plus I have vitamins and 1 protein drink to make sure I am getting enough. She seemed surprised by how little I actually eat. I showed her the diagram of how little my new stomach is and explained how it only holds a tiny amount of food at a time. I don't feel physical hunger or physical fullness, so it's difficult to gage how much to eat at meal time. I really have to stay true to the 2 -3 tablespoon measurements. As we parted, she thanked me for telling her what it's like and said if it weren't for the actual surgery, she would do it.

Today I weighed myself and on our non-digital scale, I now weigh 290 even. That's 71 pounds gone forever. Sometimes I can't even fathom that. I feel so much better about my body. It's not thin, but it's thinner. I feel bones I haven't felt before. I feel muscle and leanness. My husband tells me how skinny I'm getting. He laments me getting too skinny because he likes BIG women. But I don't think I will ever be stick stickly. Bob can wrap his fingers around my wrist. I can't do that, but he can. And when we hug now, he can wrap both his arms around me. I cried when he noticed it. He can wrap his arms around me and hold me. It's a wonderful, wonderful gift. He gets so excited about these changes too. We get giddy together.

*************************************** A Year Ago Today: August 07, 2003; The View is Amazing From Here The view from the 13th floor is just amazing. I still canít get used to it. Itís weird, but even at this height, and while sitting inside, you can still hear the noise of the traffic outside on the interstate highway. Still, the view is amazing.

Things are going well here at my new job. Iím still training. Reading lots of new material and getting to know lots of new people. I have new email and a new desk. Itís all so new. I hope it continues to go well. Iím kind of nervous. I've been doing all this self training and reading...I donít know if I will be able to put it all together right away once I get on the phones. Iím sure I will pick it up, but that fear is still lurking there. Itís one thing to read about payment protection insurance and another thing entirely to explain it and help someone gain product knowledge of it. I hope they are patient here.

Bob is off to see his Muscular Dystrophy doctor today. (I call him his MD MD) I hope they can tell him what is causing all his pain and how to better manage it. Heís really struggling right now. Heís not sleeping well and he mostly just sits in front of the computer playing Yahtzee right now. I know heís in a lot of pain. I donít understand how it feels or what heís living with, but I sometimes get frustrated at his lack of get up and go. I have head knowledge, but no real life experience to gage it by. But I feel so badly for him. I hope his MD MD can help him today.

I am having the worst sinus headache right now. Pain over my right eye and on the right side of my nose. My eyes are watering and my nose is running. I donít know what it is, maybe allergies. I never really had them before, but there is a first time for everything.

Speaking of which, I've been a walking zombie lately. I think Itís the change of schedule and routine. Itís not like I am working different hours yet. I was always at my old job by 8am and I am at my new job by 8am. Itís just a different routine. Thankfully, I am getting more exercise too. I park in the parking garage and walk to the main building. I pick up a bagel and some juice in the cafeteria and then head up to the 12th floor where I drop off my lunch and pick up some water. Then I walk up to the 13th floor and to my cube. At lunch I walk back down to 12 and after Itís back up to 13. Good stuff.

More later...thanks for reading.

August 07, 2003; Itís Not Fair; Remember when you were little and someone took your spot in line and when you cried about it to your mom or dad, instead of really sympathizing with you when you said, "Itís NOT fair!" they said something like this instead, "Well, life isnít fair my dear."

Well, Itís true life isnít fair. I just got off the phone with my husband. My wonderful, strong, passionate, kind-hearted, generous husband. He went to see his MD MD today. (He only gets to see this doctor once a year.) When I called him to ask him how it went, he said he didnít want to talk about it, that he was waiting until I got home to talk about it. Well, that just plain scared me. He said it wasnít life threatening, he just didnít want to go over it with me right now.

I guess my fear, given way to silence, must have scared him because he began to give me the low-down.

His degeneration is going faster now for some reason. The pain is normal and to be expected. Some it is because of his walking and how he sits when he rides his scooter. For this reason, they are setting him up on an appointment to talk to someone about a power wheelchair. That meeting is in October, which is good because all our insurance info will be changing September 1. His posture when walking and riding his scooter is setting his back, neck and shoulders off. If he is in a power wheelchair, he will be sitting in the correct posture for maximum health and minimum pain.

He is also going to see a home therapy team and someone re: orthopedics for his feet for when he does walk.

We need to get back on that adjustable bed track as well. He needs a bed where he can adjust the head and neck and up and down as well.

Bob is sooooo depressed. He hated this news. He hates this life right now and the prison his body is to him. He wonders why I stay with him and how I can possibly love him. I tell him his body is just his wrapper. Itís only temporary anyway. I fell in love with whatís inside the wrapper and that will never change. I canít imagine his pain. His sadness. His lost hopes and dreams. His spirit seems crushed right now. He says he wishes someone would wake him up from this nightmare and that he could run and jump again. So much has been taken from him in such a short amount of time.

I still think his diagnosis and everything that came with it was timed perfectly by God. I think we are together for a reason and that we are stronger and better as a team than we would each be alone.

Life isnít fair. But we have always known that. We continue to plug away and march on this path weíve landed on. We are not alone. We have each other and we have God, who gives every perfect gift and makes ALL THINGS work together for good for us who love Him. And we do, so He will. We have faith. Itís just a little dusty right now.

Thanks for reading. ************************************** A Year Ago Tomorrow: August 08, 2003; More Life Isnít Fair; Bob and I talked some more last night. It seems the muscles in his hands are affected as well and they will eventually claw up on him. They kind of do that now when heís not using them. Someone called attention to it one day and Bob didnít know why they did that. Itís just one more thing thatís happening to his body.

He feels so helpless. I feel so helpless. I wish I could take it all away from him. I wish it was me instead of him.

He looks down the road and sees the man he will become...he sees a withered, helpless, shell of a man who canít do anything anymore.

I look ahead and wonder how much time we will have together. How much can we do now while we still can? How much should we do while we still can?

We wonder about kids again. Should we even consider adopting? Will caring for Bob take over our lives?

He doesnít want a power chair. But it will mean mobility and some form of freedom for him. Right now he gets so testy when we do simple things like go to the movies. If the movie theater our show is in is at the far end of the hallway, he gets so tired and achy from the walk. Sometimes he wants to go to a movie, but we donít because he fears having to walk a long way from the ticket booth to the theater.

I cried last night. At one point, Bob got on the floor and laid his head in my lap. He wanted to cry, but the tears wouldnít come. I just stroked his hair and loved on him. Later on, I laid my head on his chest and cried and cried. My heart was so sad and so heavy. It hurts to see this man I love so much in so much pain. To see him struggle with the easiest tasks. To see him hurt from just walking from the car to the apartment.

His MD MD did say that he is a mystery in several aspects. First, that whole thing he went through this spring re: his blood gas and blood oxygen levels...that should not be a result of sleep apnea. He is going to request all the records and labs, go over them and will be in contact with Bob about them.

Also, Bob has severe muscle pain in the mornings. When he wakes up, itís like his whole body is in a charlie horse. Once he gets up and moves around and stretches, it usually lets up. His doctor did not know what that was about either.

There was some good news. Bob's muscle strength in the muscles he does have is amazing. The fact that he walks as much as he does and doesnít fall down had the doctor floored as well. Also, the fact that he walks as much as he does really impressed his doctor too. So we do have a lot to be thankful for. Itís just so hard right now. What about our dreams? What about starting a family? Now we know that any home we buy or build has to be accessible and that can be a pricey endeavor.

Oh! We did get more bad news yesterday as well. Bob got a letter from the MN Department of Human Rights and they have finally finished looking over his case against his former employers. Remember them? The employers who fired him after his Muscular Dystrophy diagnosis because they didnít want to be liable for any injury he might incur on the job. Well, the DHR found in their favor. That's right. They get to get away with treating Bob like human garbage. If we want to fight this in court, we have 45 days to find an attorney and file. We have 10 days to file an appeal with the DHR. Weíre not sure what to do. Bob is livid! He is so angry. He said his first instinct was to just run away. But that wouldnít solve anything because it wouldnít change the fact that he still has muscular dystrophy and no job. I just canít believe that they could look over all the evidence and find in favor of Bob's former employer. He was a faithful employee for 8 years! He worked his way up from cashier to manager. He was so hard working and such a great manager. This has really gotten him down...more so, I think than the visit to the MD MD.

So, that was our day yesterday. I hope things go better for us over the weekend. At least things at my job are going well. Yay! But I will admit Itís hard being the main breadwinner. So much is riding on me and my job now. Itís a heavy burden and I never wanted to carry it. I wonder what God's purpose is in all of this? Wait and see along with us as we travel this road together. Thanks for reading.

10:28 a.m. - Saturday, Aug. 07, 2004


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