My Life with Lupus07/14/2008 05:07:18
I am sharing a summary of entries over the past few days to allow you to have an idea of what my life is like.
Wednesday, July 2nd - (4:00 a.m.) I wake to dress for dialysis. (4:30 a.m.) . I am in the chair (after weighing myself) waiting for a technician to come and insert 2 large gauge needles in my arm. I am very sleepy because I didn't go to sleep until 1am. I make myself as comfortable as possible and hope that Donnie is the next technician available; I prefer him to insert my needles. "Hallelujah!!, Donnie is walking over here! The chance that I won't experience too much pain goes down." Donnie did a good job...it didn't hurt that much. Now, I can relax and try to go back to sleep. I feel like going back to sleep will be easy--I'll be here for 3 hours. (7:30 a.m.) The alarm on the dialysis machine wakes me. My treatment is over. I slept the entire time. I am still a little sleepy. I can feel my muscles slightly twitching ; I had 9 lbs of fluid removed today. Donnie takes my final sitting blood pressure, removes one needle and bandages the site with a small ball of gauze and several pieces of tightly applied tape. I feel like a raisin and I am still sleepy. I weigh myself and write the amount on the sign-out sheet and drive myself home. (8 a.m.) I am home. I lay on the couch a few minutes to recover from walking from the car. My cat comes to greet me. After resting a while, I make some breakfast and go back to bed for a couple hours. I have an appointment with my rheumatologist. (12: 30 p.m.) I driving to Kaiser. I have my list of items to discuss. I am hoping to get something to relieve my joint pain because I feel like I've been run over by a car almost every morning. (1:50 p.m.) I am in the room waiting to see the doctor. She enters shortly after I settle on the table. I tell her the problems I have had recently with my joints and get my list from my purse. She explains that she would like me to take Plaquenil for my joints. She also explains how my condition can worsen during the summer months and explains some precautions that I must take--protect myself from the sun and wear sunscreen. She even shows me the sun damage she has had (without lupus). I discuss my need for a sunscreen to wear on my face because my skin is sensitive. She pulls up several on the computer that I can try. I tell her about my increased fatigue and she reviews my most recent labs. She recommends that I take DHEA to help with my energy level. Exercise is the next item...I tried to start exercising and did too much or the wrong type of workout. She suggested yoga, pilates, swimming and walking and strength training with light weights. (2:30) I am waiting for my new prescription to be filled and praying it's not too expensive--another day in the life of lupus.
July 3rd - (12-4 p.m.) - I go to
July 4th - (3:00 a.m) I wake to dress for dialysis. Today we must go in an hour earlier because the staff requested us to do so for the holiday (8 a.m.) I'm home. I go straight to my recliner to rest a moment because I tire quickly as I walk from the car. I eat a bagel (I don't have the energy to prepare a full breakfast today) and take my morning medication. I go back to bed to rest and allow my body to adjust to the weight change. (11:30) I wake because my leg is cramping. I need to eat and give my body some nutrition. I have an invitation to join some friends for a barbeque, but I don't have the energy to shower and dress. They planned to gather starting at noon. Also, they will be outside. I've decided that I will relax at home alone for the holiday. It is too hot and it is not safe for me to be out in the sun all day. (9 p.m.) I am feeling stronger. I stayed inside with all the blinds shut because it is sunny and warmer than ususal. I want to get out for a moment to celebrate a little. I drive to Chili's to pick up some food for a late dinner and head to the beach near me to hopefully see some fireworks. (9:20 p.m.) I can't find a place to park and I would have to walk too far from my car to get there in time in time for the beginning. I drive in a little closer; the traffic is packed so I watch the firework show from my car. Luckily, I was close enough and the cars in front of me stopped to watch. (10 p.m.) I drive home. That's all I feel like doing. (10:30 p.m.) I eat dinner, watch TV and work on the computer before going to bed.
July 5th - (9:30 a.m.) I wake up feeling like I've been run over. Every bone in my body is hurting. I do some writing and try to take care of some paperwork I need to mail.
July 6th - I've decided to go to the evening service at church. My new medication is making me dizzy.
July 7th - REALLY bad day...was in bed most of the day/
July 8th - Lunch with a friend is cancelled. She has lupus also and isn't having a good day today. I am feeling better today, so I decide to go grocery shopping and do some errands. (5 pm) I am finally home and exhausted. I had to make several trips to bring the groceries in. Yomorrow is dialysis. So, I push through and cook something for dinner. I really won't have the energy tomorrow.
July 9th - Ok day today. Was fatigued. I felt like I was walking backwards.
July 10th - Great day. I volunteered for my lupus organization. I helped with the mass mailing for the upcoming benefit.
July 11th - Dialysis this morning. I am a little tired, but happy that I am free until Monday. I am going to rest so I can go to a movie with a friend later. I need to have fun for a moment.
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