This is what I have decided to tell all of my friends that want to come see me. I can’t remain in a bubble and not allow myself the pleasure of socializing. I’m tired of hiding behind fear. I told myself that 2016 was going to,be different and so far I haven’t changed from 2015. I’m letting fear run my life and hiding behind lupus. I’ve started a FB page dedicated to my lupus journey and giving updates as they occur as well as daily activities in my life. I truly doubt anyone is interested but I’ve had close to 30 of my friends join and like the page so we will see. My sissy told me I need to make my posts shorter and not articles so I will work on that. My first visitor is my bff from junior and HS and I can’t wait to see her. Love.
Sometimes I ask myself, why me? Then I think is that selfish of me to ask that question? I think it’s only human and God understands. I’ve been in the hospital a lot lately and after not having been in there but once a year or so lately, it’s a reminder of just how sick lupus can make me. My appearance has changed, I’ve gained weight, and my mood and personality is altered as well. I find myself snapping at my mom all of the time and she is the one that takes care of me. She prepares my meals and makes sure I’m following my renal diet, low carb diet, and low fat diet. I’m preparing my body for when I may need a kidney transplant because being overweight is an issue that will put you lower on the list to receive one.its frustrating because I’ve been on this diet for about 2 months and I haven’t lost a pound. I have a lot of bloating and swelling in my feet so that keeps me “heavy” in a sense. I’m not even cheating…lol. I just expect to see results on the scale. My BP is great and my blood sugar is stable, it’s still high but, not as high as it had been. All of this is due to my eating habits. It has been hard to kick my candy habit. I do chew a piece of bubble gum at night while my mom sleeps, we sleep together. I had to kick my dad out and I don’t want to be in my old bedroom because I’m so unsteady on my feet I need to in here with her. Also, since I fainted she really wants to be with me. I’m getting better day by day and I’m hoping to be back home next week, thank you Jesus!!!!! I want to be home in my bed with my things, my kitchen, my couch and just my life. It’s difficult because even though my sister is there she is on her side of the house and we rarely see each other except in the kitchen most times. She says she will help me so it should work out. I’m just terrified of fainting again. I also want to be back to myself when I return home and I know I won’t be and my parents will be over everyday checking on me. I’m such a baby because if they don’t think I’m ready I will probably stay a little longer. But, my home has no stairs so I’ll be able to get around easily as long as I take my time. Moving to another subject, I have an appointment with my kidney doc Wednesday and I’m curious as to what our next steps are and what my most recent labs showed. I’m praying my creatinine is still lowering and my function is increasing. In most cases it’s a waiting game for results and it drives me crazy, waiting by the phone to ring with good or bad news. Lately it’s been more bad than good. I had a ERD I think that is what it’s called. A long tube with a camera goes down my throat and it views my pancreas but while down there I had lesions on my stomach so biopsies were taken of them so I’m anxiously awaiting those results. I got a call today on my voicemail from a doc office I’m not familiar with stating I’ll need to schedule a EUS or EUD to go back down my throat, no one mentioned this to me in the hospital and the docs name wasn’t someone I knew, I’ll call tomorrow to get clarification. It is 3:33am and this is the second night of no sleep for me. My mom says just close your eyes and fall asleep, if only it were that simple. I still don’t think she fully understands insomnia. If you can sleep during the day why can’t you sleep at night, is what she says. I really don’t get it myself but, it’s real and I’ve read definitions online but, her questions throw me off and I have no answers. She’s laying beside me silently sleeping and I am so happy I still have her here to love on me and I know the time will come when our roles change in each other’s lives. Yes, I will find my energy and do whatever needs to be done along with my sister to make sure she and my dad have every single thing they need well into their 100’s, yes I’m claiming it, that I will have them both that long. I’m just cherishing the time I have now. I stare at both of them a lot as if I don’t want to forget what they look like…lol. Hart to Hart is on tv right now, I love it, along with Matlock and Columbo, that was random. Well that is all for now, I will post again when I get results or get proper clarification of the new procedure, or just want to type. Take care all of my followers and thank you so much for simply being interested in my life. Love.
Recently I’ve had two childhood friends want to visit me. One that lives out of town and the other is local. I am hesitant because I feel as though I have nothing to contribute as far as conversation except my failing medical condition and that is highly boring. My mom is telling me that I should see them and just talk and catch up and if nothing else listen to them talk about their life and how it is. This would be great if I were close to having what I thought I would have at this time in my life and I do not. My life is depressing and sad and to hear someone talk about what I thought I would have at 42 is further depressing. I am happy for my friends having spouses and children but, I do not and I won’t because of this disease that has robbed me of everything. I know it could be much worse but what it is is pretty bad to say the least. I feel like I don’t want to be seen by anyone with the exception of family and my sister friend, whom I will see next weekend and I am so so so excited. The plan is for her to come up from or over from Indy and Saturday we will get together early go to lunch and just spend the day together talking, me venting to her and just having a come to Jesus session Which I really need right now, I wish my sis could be there but she’s going to a wedding of a coworker. I’m not sure if we will chill at my moms house because that is where I’m staying right now or my house. I think my house would be better. I will also have to convince her to talk a selfie and ,et me post it on FB, for some reason it makes me feel human and that I’m doing something besides sitting in the house but, I will respect her wishes if she says no and simply have her take my pic saying I’m out with my sister friend…lol!! I told my sis about the outing and her response through text seemed a bit different. I skied her if she felt left out and she said no but I sensed something different. She has been looking forward to this wedding for awhile and I had forgotten and I asked her if she wanted me to go with her but, her hubby is going. It’s hard to read my sis and then trying though text is damn near impossible. At this point I can only go by what she has typed me. So now an update on my health. It’s not great. My kidney biosy went ok but while they were in there they injured my kidney causing a tiny bleed. I then had very bad back pain afterwards and was told it was because of laying flat for 24 hours after the procedure. I’ve since been hospitalized for it and after X-rays was to,d it was probably muscle or skeletol issues not the bleed from the injury. I also had other issues as far as my creatinine being high and my BUN which deals with the kidneys being very high and my iron being extremely low. I was watched for a few days and then let go. It looks like I will be starting dialysis a lot sooner than we had initially anticipated, which is totally scary on a whole other level. I was told that I would be placed at the top of the list but, would be told I need to lose weight to put me even higher on the list. I am hoping my sister is a match for me but, you never know. Ice also had several of my high s hold friends offer to be donors if they match, which blew my mind. I to,d them as we get closer to that I would keep them informed on what they would need to do. I see the love that others have for me and it’s truly overwhelming. They are telling me that they want to see me or simply come over and sit with me to talk to cry or whatever, it’s just so nice of them. I don’t ask for help ever and they are waiting for me to. I have everything I need from my parents and I’m well taken of. I tell them that but, I guess companionship from friends is what I do need because it is missing in my life. Back to health, to get my weight down I may have to have the sleeve operation and after losing weight from that my doc doesn’t think it will be long before I am matched because I will go even further up on the list. It’s all very scary and at the same time I hope it works in my favor. It’s 5:10 am and I haven’t been to sleep yet. It happens this way sometimes, despite taking my sleep aid and pain meds I’m up all night because of my insomnia. I am thinking my friend from ,out of town I will visit with but, the local friend I may ponder that a bit and the reason is the relationships were completely different. Any advice is welcome. A bit more info is that the out of town friend is a female that I’ve know since I was about 7 or 8 years old the other I met as a teen and he is a male who I got very close to for years after. That is all I will say so figure it out..lol. It would be a very innocent meeting between us since he’s married now but he has a very big heart when it comes to those he cares about. I will keep,you updated.
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!