sunflowery's Diaryland Diary


Why I was gone so long

Hey All!

I just have to write and say thank you so much for all your prayers, care and concern as far as my health is concerned. It turns out that my health issues were actually quite severe. The endoscopy on Monday did fix the stricture in my stomach, but unknown to us at the time, I was so severely dehydrated that my kidneys had started to fail. This was causing trama to my body which manifested itself as wretching and heaving uncontrolably. This was all discovered first things Wednesday morning at the hospital where I was once again biding some time. I was admitted immediately and put on IV fluids right away. While this was helpful for my kidneys, it did little to ease the horrible wretching. On Thursday, my doctor had a pickline or catheter put up my shoulder and I was put on TPN, which is a fancy way of saying liquid IV nutrition. Apparently what had happened is that I had lost too much weight too quickly with my bypass surgery in May. This caused the stricture in the stomach which caused the dehydration which caused the wretching. Once I was put on the TPN nutrition, the wretching stopped and I began to feel more myself. With each passing day, I began to feel better until I was released from the hospital this afternoon. I am still a little weak, but feeling much more myself. I still have the pick-line/catheter in my arm and have to hook myself up to the TPN every night before bed. I have a visiting nurse company on call and they come daily for the next 3 to 4 days and then weekly after that until my weight and nutrition levels are back to normal. If any of you have had surgery or anything medically serious in nature, believe me, there is a reason people say, "Call your surgeon!"

I have heard it said that the 3 month mark is the magic number. I joked with my surgeon this morning that he owes me some easy street time from now on. He says I'm his golden child. I think that's just because I'm keeping his kids in braces and single handedly paying their college tuition. But really, he's amazing. I am learning a lot about how I feel and how it relates to nutrition. This morning he came into my room and asked how I was feeling and I said I felt a tad nauseous but was craving apples and bananas. He looked over my chart and noted that I was low on potassium which explains my nauseua and my craving. He said apple sauce is a good source of potassium, as of course, are bananas. He sent me home with a supplement to help. While I'm on this TPN, I can still eat regular meals and he recommended that if I have a craving I would be OK to follow it at this point because it is most likely my body needing something. I laughed and said, "Oh, then that chocolate cake I've been craving is ok too?" He wasn't so easy to win over on that one.

So I am home and doing well today. I am on a temporary medical leave from work. For at least as long as I am on the TPN nutrition which they figure to be at least 2 weeks or more. I see my surgeon on Thursday for another checkup.

While I am doing better, may I please ask for your prayers for my brother's wife and her family? My brother's wife is called Belle here in this journal. Belle's has a brother named Dennis. His wife Amie was jogging Thursday night when she was struck from behind by a truck and killed instantly. She leaves behind Dennis and 2 little boys, ages 6 and 4. My sister in law has been helping Dennis care for his boys while also helping my brother and their boys move from the home they have lived in the past 8 years to a brand new home. So, if you are a believer in God and prayer, could you pass some along their way? The funeral is Monday. Thanks.

God bless you and much love to all

-------------------------------------- A Year Ago Today: August 28, 2003: More on MD

Only 3 days until the Labor Day MDA Telethon starts. Do not forget to check it out.

My husband is an amazing man. Yesterday he worked a 10-hour day at the Amoco across the alley from our apartment. He got up at 5:30 am in order to be there to open at 6. He worked until 4pm. He unloaded groceries and rang up gas and goods at the cash register. He said it felt so good working with people again and doing the heavy manual labor. He said he felt like a human being with a purpose again. He loaded groceries onto his scooter and scooted them to the place where they belonged and put them away. His boss had high praise and compliments for him. He came home feeling very happy and content.

This morning though is another story. Before I left for work, I reached down to rub his sleeping body. He woke up and told me that he was in soooo much pain. He said the work yesterday felt so good but the pain he felt today was soooo not worth it. Now he realizes why he has to take it easy and not over do thing. He said he had pain spasms from his lower back to his knees. That it felt like nerves were damaged. This would make sense. If his muscles go, his nerves go too. I so hate to see him in pain. Thatís the worst of this disease. Watching my husband struggle with pain is agony on me. I wish I could take it away from him or that it was me instead of him. I say this every time, but it is true.

I am so tired today. I could not keep my eyes open last night and went to bed at 10pm. I woke up at the dawn cracking hour of 8am this morning. You would think that would be enough sleep, no? I would think so, but apparently not. I have not stopped yawning all day. And I keep thinking itís Friday, only to be smacked with the realization that no, Friday is still one more day away. Sheesh!

One of Sweet Babooís sisters told me about the MD Family Foundation. A non-profit organization offers financial support to families with MD. I just sent off an application to them in order to get a lift for SBís truck. There are many hoops to jump through, but if it all works out in the end, it will be so totally worth it. The MDA helps with some expenses. Like, they offer $2,000 every 5 years towards a power wheelchair. That sounds like a lot doesnít it? I thought so too until I found out that power wheelchairs can cost anywhere from $10,000 to $30,000! MDA also gives $500 in repairs every year. That comes in handy for batteries, replacement wheels, and such. They will also pay any medical bills incurred that are MD related after submitting them through our insurance company. Therefore, they are a super resource to have on hand. (This is also why we want to donate some time answering phones at the telethon. They do so much for us; we want to give back a little in gratitude.) However, the Foundation will pay over and above what MDA covers, once they get all the paperwork and see the need. I do not know how long the whole process takes, but I am sure we forgot something they needed and will have to send more info in the near future. As long as they have our application on hand, we can apply for financial help with wheelchairs, ramps, adding accessibility to our home, etc. All of it has to be justified and applied for in writing, which will keep up busy, but it keeps them aware of the needs out there and helps them screen anyone who may be trying to pull the wool over their eyes.

I also sent in a request to day for Sweet Baboo to be put on Medical Assistance. I do not think he will qualify, but the Family Foundation requires that all other means of assistance be looked at and applied for before they will step in and help.

I still have not heard from that Disability Defense place about our case. I will have to have SB call a couple of lawyers near here. Our deadline is rapidly approaching. It would be a shame to lose just because we missed the deadline.

One of my biggest frustrations is that SB will not do a lot of this paperwork himself. He says he hates being on the phone and being on hold and then being transferred and then being on hold again only to have to call another different place. Well who does like that? However, that is part of getting what you want. Or at least finding out who can help you get what you want. So many times, I end up filling out all the paperwork and just letting him sign it. If I do not keep up with the deadlines of stuff, he just misses out because he will not take the initiative. I know itís busy work and I hate it as much as the next guy, but it has to be done. In addition, where I work now, I cannot make a bunch of phone calls trying to track stuff down. So, I have to look over everything he gets, strip it down to its most basic components and leave a detailed note about how he can handle it. Either that, or do it myself. It gets a little tiring, but it has to be done.

I just got off the phone with my Sweet Love. He sounded so sad and depressed. I told him I thought he was amazing and he said, ďwhateverí. He said he is not amazing and does not feel amazing and will not ever be amazing. I told him it does not matter what he feels, it is the truth whether he feels it or not. He just sat quietly. I hate this part of what he is going through too. Nothing I can do to make him see how special and wonderful he is. He says he feels so naughty just putting stuff off, but he says he cannot help it sometimes. It just takes too much energy. I guess I understand that. Plus, almost everything reminds him again of his limitations and disability.

Before we knew what this was, people would stare at him because he walked funny. I would feel sort of self conscious and embarrassed for him. I donít know what changed once his condition had a name, but now I stand taller and walk proudly beside my amazing husband. He is a testimony of hard work and of never giving up or letting something get the best of you. He is a fighter and as long as we are together, we will fight together.

Thanks for reading.

6:52 p.m. - Saturday, Aug. 28, 2004


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