Thursday, October 1, 2009

Back from Vacation

Well the picture says it all. I set out on a 25th anniversary trip for 10 days with my husband and friends. I really tried to pace myself giving some time to down days, just for resting, where I knew I could spare the time to prepare for the next stop. I haven't flown in quite a while and the airplane ride from Oregon to Orlando was very very tasking on my legs. Fortunately we had an evening to rest before boarding the cruise ship on Saturday. The fun began quite quickly and the ship was very big and overwhelming to me. I knew the amount of walking that I would have to do was overwhelming. Recently the breathing specialist explained how I needed to compensate the pace of my steps to coincide with my breathing. I wasn't in a hurry, so I moved quite slowly. The heat in Orlando was sweltering and I swelled up like a balloon. I thought that it wouldn't matter because I would be mainly be inside, but I was wrong. Heat and Lupus does not mix (there goes the retirement home in Miami). We were at sea Saturday and Sunday, so it was easy to relax, but Monday we landed on Cozumel. I braved the temperature and went off ship to see the area. I have never felt more tired and extremely exhausted than I did this day. I could barely make it back to the ship when the clamminess of my skin, chills, and fever took over. Well Tuesday was a day in bed for me (all day). I had to get myself together for the days to come. My husband was amazing and he managed to still enjoy his self and continuously checked in on me to be sure that I had everything that I needed. Mostly I appreciated his patience and non-judgmental attitude toward me. He never made me feel pushed to do anything that I couldn't do and never made me feel guilty when I said I couldn't. Thank you! The rest of the week was kind of a blur. I managed to do one excursion in Costa Maya to see a Mayan Ruin, which was so amazing and well worth the effort that it took to get to the location. It was quite humbling to see it and be there to witness the daily life of the Mayans today. We ate dinner with a local family and watched them as they demonstrated their daily activities. This took everything out of me and this was now Thursday. Needless to say that evening I started getting sick. I managed to catch an upper respitory bug, which I am still fighting. Friday we were to spend the day all together at Atlantis and I couldn't go. So, I visited the infirmary early Friday morning and went to bed. Saturday we left the ship and I stayed in bed at the hotel until we left on Tuesday to return home. I didn't think I was going to be able to fly, but the airlines didn't have any other seats available to move my reservation until late in the week. I put on my mask and traveled home. I started with another bladder infection in the mix of the bug that I had picked up on Sunday. The bottom line is that through all the obstacles of fever, joint paint, swelling, aches, and pains...I had a fabulous time. I have thought long and hard throughout the week and had a couple of breakdowns with tears when I had to stay in my room while my shipmates were able to go and explore the ports. However, I had to realize that if I hadn't have gone I would have missed the things that I was able to do and see. Yes, I moved slower and needed to pace myself and taking photos of myself wasn't high on my list of things to do, but I smiled and took the photos because this is who I am and this is my life now. I want to be remembered as I am and still have the photos for my family. Going on this trip was very good for me emotionally to reach my limits and learn that even though I have this disease it doesn't have me. I am not going to stop doing things! I have so much left to see and do. Maybe now that I am doing them a little slower than before I am actually spending the time to enjoy them and appreciate them more. Thank you to my friends and family for their support and understanding. You are the best!


Nicole Scholz said...

I am so glad to hear that you had a good time!!!! Although it was tiring it was good for you physically & mentally.

For the last couple weeks I have been in bed myself. For the last 9yrs I have been hell bent on finding a pattern of why I go into flares. By now you would think I would learn, Lupus has no pattern. lol I am very fortunate to not have any internal problems, with the exception of bouts with Pleurisy, & chronic diaherrah. I have the weird rashes mainly on my arms & hands, RA in all joints, crippling muscle pain, neurological problems including 4 strokes, fevers mine are not what I would consider low grade, crippling migraines, light sensitivity sunlight included, heat sensitivity those are the everyday ones minus the strokes. I have been in bed since Sunday with migraines,fever, & general achiness, the migraines are so crippling that I have to go in my room where I have it blacked out like night all the time. This disease is all over the place with symptoms. No pattern, no warnings, it just comes out of the blue & pulls the rug out from under us all. After 9yrs I am as baffled as I was when this first hit me. lol

I am glad to hear you had a good time despite all the walking & heat. the change of scenery had to be awesome if nothing else!!
Hang in there! if you want to chat, or email let me know I am always laying around bored LOL

Judy Lewis said...

Thank You for sharing. I am 61 and suffering for years,but finally got the diagnosis recently. Sores in my mouth, butterfly rash, all over rash, head and nose sores, so tired I can hardly move, walk like a crippled woman, gaining weight daily, full of fluid, memory is going, light sensitivity (especially florescent), but I am praying and believing that God will take care of me. Cant get disability, hardly any insurance, hmmm wish I was 65 for Medicare. God please help us all. Blessings to you, Judy