There was a woman walking from a Bible study group a few homes away from my parents home maybe 6 months ago. She called out my dog by name, yet didn’t know his name, she asked my mom if she was the owner and mom told her no, that i was. She walked up to my mom and said, I pray for your daughter’s health and I see cancer and was using her hand to go in a circular motion in front of her stomach. My mom told her I didn’t have cancer but I had lupus and kidney involvement so she assumed she was referring to that. We were blown away by this woman but really didn’t think any more of the cancer until a few weeks ago when i was diagnosed. i wish i could talk to her, maybe she was an angel just meant to inform my mom of what was to come. whatever or whoever she was i am grateful for her.
Moo It’s been awhile since I have been in here and I really don’t think anyone follows me, but it is therapeutic to write down what I’m going through. I didn’t look at my last post to see what it was about, so this would be a continuation. So I will just start. My kidneys have been up and down as far as function % goes and for now I’m in stage 4 renal failure. Talks of dialysis is still on the table,but thankfully I don’t need it as of now. My doctors also found tumors on my stomach called carcinoid tumors and they were malignant stage 1 cancer. The prognosis is nearly 100% in all patients so my doctor removed the three with no problem. About a month ago he went back to make sure he had gotten them all and unfortunately found two more and removed them successfully as well. I will have to have a repeat surgery in 6 months to check for recurrence. In addition to this, I pave had warts on my backside for about 3 months and I was told because my higher dose of steroids it would not heal and I just had to deal with it. Well, the steroids went down and the warts didn’t get better. I went to a dermatologist and he froze the area and was planning on doing several rounds of freezing over several months. When I returned after a month for the second freezing I told him the area was no better and it was actually worse than before the freezing. At that point he suggested that the best bet would be to just have it removed, it’s a cluster of warts. So he referred me to a colorectal surgeon to get his opinion and he advised me that th needed to be removed and tested. Unfortunately, the hospital he is affiliated with isn’t in my network for my insurance so he couldn’t do,it. He then referred me to a general surgeon and he is going to perform the surgery in about a week or so, I will finally have this issue taken care of. It’s so weird that it seems like every part of my body has something wrong with it. Lupus affects my joints and my skin, I where issues with my scalp, my ears, my hands, my feet and ankles, my stomach, my vajj, and now my butt. It sucks to hurt literally everywhere. Also on top of that I had an argument with my sister and I have learned from talking to my bible study mentor that we are sisters and the bottom line is we love each other. We will argue we will yell and we will shout but we love each other and I had forgotten about that. I will be seeing her this weekend. I’ve also been staying with my parents for awhile. This hasn’t set well with my sister but the truth is I feel more comfortable here especially when I’m sick. My mom also prefers for me to be here because she doesn’t want to have to come back and forth from her house and my house to help me. And I have company when I am at home I’m alone and I don’t even have my dog because I can’t take care of him properly. I’ve asked my mom if she’s ready for me to go or if I’ve over stayed my welcome. She says I’m her child and there is no way I could over stay anything, I’m always welcome here. I love my mom. My lupus has been ok, I think it’s pretty stable and it’s time for my re evaluation for disability and I got a call that based on the information thus far they couldn’t determine if I was still disabled. So I went to see their psychiatrist for a evaluation, I. Not sure if it helped or not but I also had my PCP do a physical so I’m hoping this will help me. If,they deny me my lawyer will step in to assist me once again. It’s scary becaus I have bought a home and all of the bills that come along with that. So I depend on my disability to keep my independence. I know with all of my heart I couldn’t hold down a job working a typical 8hr day 5days a weEk. I would need the company to make several exceptions for me during my shift and this is actually what lead me to getting fired from my last job. 15 years I gave to that place and fired because of something I can’t control. I’m sleepy people night.
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.
Ok, this is a blast from the way back past, but my definition is very different from Fresh Prince AKA Will Smith’s original version. He was a teenage boy wanting to gain freedoms that were well beyond what his years could handle. From his perspective, he wanted what he wanted when he wanted it and if his parents didn’t agree they simply didn’t understand. Well, fast forward 20+ years to a 38 year old woman in an awkwardly similar situation. I want to be able to re-introduce myself to society and start experiencing new things again, sounds wonderful right?? It would be except my parents are hesitant to let me. Their rationale is not my age or even my inexperience it’s because “they” don’t feel comfortable with it. So me regaining my independence and freedom depends on their comfort level, really?? Yes, there are times when I literally can’t bathe myself, I can’t cook for myself, I need rides to doctors and yes most recently needed them to be by my side in the hospital. But I am still a living 38 year young woman that wants and more importantly deserves freedom. My parents have raised 2 wonderful daughters, are we perfect, far from it, but we are loving, smart, make good decisions, are compassionate, giving and have never given my parents real trouble. We have never been arrested, we did not have to have to say the dreaded words that so many teenage girls do, we never were involved in drugs, just good girls. Even with all this it is as if they think I am so incapable that I can’t function without them. I will have set backs and I will need them but Lord I just want “MY” parents to understand.