Memorial Day

I am drawing a blank and that is pretty sad as an American. My dad is a veteran but, I thought memorial meant to memorialize and my dad is alive and well ( knocking on wood). My grandfather served and he’s passed away so I celebrate him today along with my Uncle Snap and Uncle LC.

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Huh???

May 16th, the  Cleveland Clinic. Purpose: to get a second opinion on my failing kidneys. Dr Wong, young, handsome, witty, extremely intelligent, and very impressive. It was a trip well worth the 8 hours. Since I have been a child, I have loved road trips, especially family trips. Even though my sis was absent, I loved the time with my parents in the car with my pillows and blanket cuddled in the back and them in the front. It takes me back to my childhood and I love it. We will be returning Wednesday for my biopsy. I’m not looking forward to the procedure itself but, the trip up and down, absolutely. At times I wish I was still a child, I wish I could do my life all over. High school, college, my professional life absolutely everything, in order to have a different outcome. To be an achiever, someone that makes her parents proud and doesn’t fail at every single thing in life, including maintaining reasonably good health. I just can’t get anything right.! I feel like a failure all of the time. My family tells me I’m not but of course I don’t see it that way at all. I’m jumping all around in this post by the way. I’m writing this from a hospital bed, my body is  falling apart and I don’t know what to do, the docs don’t know what to do, it’s scary. To hear the words “our backs are up against the wall” as far as treatments go for improving my health is definitely scary but, it’s my reality at this moment and I’m going to roll with it until the tires fall off. I’ve gotten some good news while in the hospital, my creatinine, which is the waste that should not be in your kidneys has decreased since I’ve been here, so that is very good news. Mind you the level should be under 1.1 and my GREAT low level is 3.4 but, we are rolling with it. The funny thing is I’m happy or should I say, I feel a need to be happy and put myself in extremely pleasant situations. I’ve told my mom and sister I want to go out, besides docs appointments, I laughed and told my sis I want to lunch, I want to be a “luncher” lol! My mom and I went to lunch the other day and I loved it, we sat and ate and talked and people watched and I had the time of my life. To eat out isn’t the healthiest choice of cuisine all of the time but to limit yourself to grilled meat on lettuce is a winner every time. It’s 1:01am Thursday and I’m hoping I’ll get out today, if I do my sis and I will go to dinner Friday for a makeup bday.! We haven’t had a sissy date in so long and I’m really excited. I need to go to sleep so the morning will come and I can, fingers crossed, eat regular food for breakfast or lunch and be home by 5pm!!! It’s so funny I’ve been at this hospital so many times I know my favorite meal to order. Grilled chicken sandwich with lettuce tomato pickles onion baked fries garden salad a milk and dessert (gotta have the milk bc the fries are spicy). And I’m excited to be eating it tomorrow, yep, I’m claiming it. It will be on a tray in my face maybe even for breakfast…lol!!! I’m finished for now. I hope all are well and beginning to enjoy Summer, wherever you are!

Pain pain go away and come back….uhhhhhh….never!

I’m sitting here at 11:43pm waiting on my pain meds to kick in and watching John Wick, if you haven’t seen it and are a fan of action and a lot of guns plus Keanu Reeves look it up. I’ve always wondered why my meds kick in immediately sometimes and sometimes they just don’t. I guess my body maybe at a different balance or level of something that causes the meds to not absorb as quickly every single time. I wish I knew what it was so I could have everything in a line when it’s time to take them. I am having a surprise bridal shower for a friend on Saturday and I’m kind of excited because I haven’t seen my friends in awhile, one in particular in probably 6 or 7 years. I consider her one of my closest girlfriends but we just don’t see each other or really talk that often but, if I were to call her and need something she would be here for me in a heartbeat. I need advice on something, I may have mentioned in a previous post. Since becoming sick with lupus I have alienated myself from all of my friends. When I am sick or in the hospital none of them knows and therefore can’t visit. Now that I’m spending more time in the hospital and undergoing treatments I would like visitors. Should I ask them to visit me or call them when I’m in the hospital to let them know and then let them decide whether or not they will visit? I’m lost because I don’t want to come off as needy or begging but, I miss them and seeing them when I’m sick will lift my spirits. I’ve gone without them for so long and granted this is my doing and I want to reverse this. My mom told me if I make myself more present and frequent in their lives they will notice if they haven’t heard from me and therefore know something must be wrong. This makes sense. I also am going to tell them that I would like to start getting together at least once a month if their schedules allow. I’m really not a phone talker but to text frequently wouldn’t be an issue either. My health is so unpredictable and I never know from minute to minute how I’m going to feel, I cancel a lot and this is the most frustrating part of lupus. I have so many plans in my head and at times I can’t execute them. I will be constantly apologizing to them I am sure but,,I will do my best to push myself if plans have been made. I told myself even if I am flaring with a fever on Saturday, I am not cancelling this get together, I will just get medicated up wrapped in my favorite robe and be amongst the party. It actually seems that when I’m with someone talking and focusing on something else I deal with the flare a lot better. I guess this makes sense because your mind is on something else and not the pain. When alone all you think about is the pain you are in. Case in point, right now, alone and all I can think about is this pain. The typing is helping slightly but, not really. I wish I could call my mom but it’s to late and she has an early appointment before we go out to get everything for my party tomorrow. She came over here today and completely cleaned my bathroom for me. She has dusted my furniture and cleaned my carpet and vacuumed. She’s also going to help me clean off my counters in my kitchen. I would think my sister would help me but, she’s busy with school and just life in general.  I wanted to clean out my fridge because it is so unorganized, just in case my guests go in to get something but, I’ve decided to have an ice chest out with the drinks in it so there will be no need to go in the fridge at all. I am having sushi, cocktail shrimp, meatballs, chicken wings, pasta salad, a vegetable tray and cake with ice cream. Along with soda, water, wine and the brides favorite drink, Jack Daniels and 7UP. It should be fun, it’s a small group just 4 of us and we had a bet many years ago that Frances, the bride, should be married by a certain year and if her boyfriend at the time didn’t propose she should move on. I’m not sure if she signed the agreement or not but, I think she did. Needless to say it was well past the date on the paper that they finally got married. I’m sure the year was more than 10 years ago on the paper. This is hilarious to me and it will be brought up for sure.  My fingers are cramping so I must stop or now. Be blessed.