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It's been an adventure...I think...maybe...I'm starting to feel better.

Feb 12, 2009 - 1 comments

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It's been an adventure....I started tx on Friday June 13, 2008. I had just started getting over a cold or some upper respiratory funk so I had a cough. The cough lasted for a couple of months into tx and the NP told me it was because of the Riba…I thought it would stay through the whole tx but I started using Rockers virgin coconut oil to take my Riba and to my surprise it killed the cough.

My job ended in July, which I was thankful for after my HGB dropped. It was really hard to be outside in the heat and not able to breathe. I took a Riba reduction and my HGB started to rise slowly. I also started to notice some apathy so I started taking AD's...I'm sure they helped but I didn't notice much. I had a couple of insignificant temper outbursts...but in all I think the sx were very kind to me.

On Labor Day weekend Hubby and I went on vacation to Put-in-Bay with family and friends. I almost didn't go...I thought I would only be a drag on everyone else since I wasn't myself but Hubby insisted and it was a good time. I got to see some great sights even if I couldn’t keep up with everyone.

Then the holidays came...I didn't cook Thanksgiving dinner for the first time in more than a decade. My Grammy couldn't make the hour long drive to my house from the coast so we went to her. It started out to be a hectic day, the oven broke but luckily we had the oven in the RV and the cousins live close by so we were able to pull it off.  We all had a great time.

Thanksgiving Day was officially the end of tx for me....funny how that works...start on Friday the 13th and end on a day of Thanks to God. I've never been superstitious so starting on Friday the 13th was no big deal...but ending on Thanksgiving Day has great significance.

I thought I felt better within two days of ending the meds but then started to feel tired and every day for a couple of days I was feeling more and more run down...then I started a sore throat that ended up turning into bronchitis...I had to go to a Dr and get antibiotics for that. I have never had anything like it before...and it lasted for several weeks. It didn’t help that my HGB did a little nose dive as well.

Christmas came and we went back to the coast to celebrate with my Grammy....what a great holiday. The house was a revolving door of family. The weather was beautiful. Everyone had a great time. My bronchitis was gone but I still had a bit of a nagging cough and the cough meds made me feel groggy.

Two days after Christmas Grammy went into intensive care with pneumonia…she required 100% oxygen and even after the pneumonia cleared she didn’t regain the lung capacity to come off the 100% oxygen...She went straight to Hospice…they kept her comfortable until she passed on January 8th. I moved the RV back to the coast and stayed there so I could be close to her and help my mother. It was difficult to visit Grammy in Hospice…She said she wanted to come home but her oxygen machine at home wasn’t capable of putting out the capacity that she needed. We all spent many hours with her till she passed peacefully.

I think it was harder for me to see her in Hospice than it was when she passed.  The first time I drove to see her I could feel the tightness in my stomach and a lump in my throat…almost choking me...the closer I got to the hospital the worse it was. When I walked into Hospice I had my arms full of things for her…Big frames full of family photos to hang on the walls, her nice soft blanket to keep her warm, a pair of pearl earrings that she liked, some flameless candles and some nice smelling lotions but I couldn’t walk into her room. I just stood in the hall outside, tears and snot running down my face. A couple of the nurses brought me some tissues and a chair. They offered to take the things into the room but I didn’t want Grammy to know I was there till I could go in without letting her see me in tears. Mom said “no tears”….it was hard to dry up but I finally did.

I stayed at the coast for weeks and helped my mom with the house…in those weeks, my daughter “the Princess” moved out of my house and in with her brother!!! Yay! She got mad at me over a hair clippie thing while she was at the coast. She threw a temper tantrum, went home, packed (some of) her stuff and moved to her brothers house. Now she does everything there that she wouldn’t do at my house (dishes, floors, clean bathroom) and pays her brother rent on top of it!!! HaHa!!! I packed everything she left and brought it over there for her…she wasn’t happy about that…oh well….

I got sick again. Nastiest head cold I ever had in my life it lasted for a month…My nose is still a bit snotty. The whole family got “it” but they all got over it quicker than me. I hope to regain y immunities soon also.

I am now starting to feel better…thank God!....In the last two weeks I have been very productive…it’s Race Week and we usually have a house full from up north come and stay. I spent two weeks just trying to get the dust out of my house. I should have hired a house keeper while I was taking the tx meds…but I thought I could handle it. I still don’t feel as good as I was expecting to feel and maybe I never will but I have more drive to do things now than I did even before tx. I can also organize my thoughts better…I had noticed, over the last few years, a decline in my ability to organize things in my head…sometimes I couldn’t even muster a grocery list…but I feel as if my brain is coming back…maybe it will come back all the way, maybe just a little? Who knows but I’ll take what I can get and pray for the best. I even feel more energetic…it’s hard to describe but I feel more pulled together…mind and body. I had started to become reclusive…not wanting to leave the house for anything but now I am getting out more and feeling good.

Yesterday we set up our RV on the beach in Flagler county just a few miles north of my mom's house. It was a beautiful day, 84 and sunny. Today I got to see the sunrise on the ocean for the first time in a very long time. The race week crowd is here and the guys have gone to the Duel ...I'm going to take my motorcycle for a little ride through Tomoka State Park...

Looks like my life may be returning so some sort of "normal"...




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by susan400, Feb 12, 2009
I'm glad to hear that you are starting to feel semi-sort of better.  Missed you when Lady Lauri and I met, but I understand.  I've been on a mission to 'work-out' as much as I can stand.  I want to get this bod of mine in as strong as shape as possible before I have the opportunity to attack the virus again with yet another round of treatment.  Nothing else is new really, other than that.

Susan400 a.k.a. Libby

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