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.
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!
Today I faced a fear that I have with dealing with this disease, the increase of prednisone, the most common steroid for lupus treatment. It has several side effects, insomnia, nausea, weight gain, moo face appearance, hair loss, headaches, and high BP among many others. My IV was 500 mg, to put this in perspective, a high dose by mouth is anything over 20mg a day. My daily dose has been increased from 25mg a day to 60mg until the end of April. I’ve gained about 40lbs since March of 2015 and have not had a chance to lose any of it so far so I am praying that I have self discipline over the next few months to keep my weight under control. I am aware that the main issue should be saving my kidneys from failing and not how much weight I may or may not gain, but I guess I’m a bit vain in that aspect. I am completely aware of what impact this medicine will have on my overall life expectancy and I will do whatever it takes to live the fullest life possible. I will have 2 more days of 500 mg of steroids and that will be it, I felt out of sorts after the treatment and had a metallic type taste in my mouth that subsided quickly. It wasn’t bad at all. I hope I’m able to have a good nights rest. I also had an issue with my BP when arriving, it was 240/124, this was a huge concern and it had been running high over the past few weeks but not nearly this high. It was taken a total of 3x and by the time I left it was 145/109, I went to my primary doc later in the day and he started me on an additional BP pill. I currently take 5 BP meds and they all have been increased to their capacity. I am having a major headache as I type but I can bare it. It was hilarious that on the new drug side effect the first thing listed was headache/pounding…lol, all I could do was laugh as I swallowed it. This is the beginning of a new journey for me that I hope ends very well for me. Here is a picture of me as I was getting my infusion today. God bless you all for following and joining me in this journey.
Can I really complain about being single when I am doing absolutely nothing to change the situation? I haven’t dated since my boyfriend passed away April of 2011 and I guess I didn’t want to disrespect his memory, but I feel it’s time to get back out there. So much has changed in my life this past year. I lost my job of 15 years with Duke Energy, due to illness, I had to move in with my parents and on top of that I tore my right knee acl. Now tell me what man is going to dig a chick with all that and a limp. It is really frustrating to see women my age successful, independent, and able to rock a pair of high heels and have to compete with that. It is a losing battle. Don’t get me wrong I have been told I am attractive but, that only goes so far. Yes, I am intelligent, humorous, outgoing, giving, motivated, etc, but if I am slow moving, sometimes with a cane, will there be a guy to look past that to get to know all of my amazing attributes..lol. I think that is why before my previous boyfriend I hadn’t dated in 4 years, fear of rejection for being sick. But, you know what fuck that (excuse my french) I am who I am and I have lupus. I am also beautiful, wonderful, loving, giving, nurturing and most importantly I am ready and the man that is fortunate to call me his is a very lucky man.
My health has been declining since mid July. I could feel it and I am normally correct. I had been nauseated for weeks with body aches and fever. Obviously I assumed it was lupus but nausea was a new symptom for me. I tried to avoid going to the doctor because I had an appointment already scheduled coming up. So the normal tests were run in addition to some others to see what was going on. I received a call that I needed to have an ultrasound of my pancreas and gall bladder immediately. After that I got a call that I needed another test done as soon as possible. I was diagnosed with pancreatitis, which I have had before, but the rush with the tests is due to me specifically. After going 3 weeks barely eating or drinking I suffer from low kidney function so I was very close to kidney failure, which has happened before. So I was admitted to the hospital and stayed there for 3 days being re-hydrated with fluids to bring my kidneys back to my normal. I still feel pretty crappy but not as crappy as I did 4 weeks ago. I am so lucky I have the family that I do to be there for me no questions asked. I am grateful grateful grateful.
My nickname used to be social butterfly, I loved to be out and about and I could ease my way through any social situation. Unfortunately, this personality trait is on hiatus or it actually may be retired. I rarely go out at all, but after having a recent pity party, my sister was determined to get me out of the house. She and her co-workers convinced me to hang out for a little while. This should seem almost a no brainer, but alot of thought goes into any outing with me these days. I knew that I would get tired and need to rest, this is not an issue when it’s just my sis and me. In some way I feel like a burden everywhere I go and I don’t want to inconvenience anyone. On top of that, I have to know exactly where we are going and the parking situation. Honestly, after going through all this in my mind I am too tired to go. But, Friday night I made the decision to release my hermit role for one night and socialize. It actually went very well, I was able to sit when I needed to and didn’t hold up shopping progress. Then there was dinner and despite it being 30 below 0 in the restaurant, I survived…or so I thought. Saturday morning reminded me of why I choose to stay in and how I lost my butterfly title, and at times I truly believe to get out and be amongst the living is not worth the pain that follows.
Well, the answer is yes for today. Today was a very bad day, but thanks to love from my mother, father, sister, and doggy nephew…..I’m good.
I have been suffering from insomnia for quite awhile, despite taking ambiem at night, I am normally up until 4am. This started before I lost my job but is definately happening more frequently. In the past 10 months I have gone no where except on sister dates. So sad, but it’s my life. I haven’t met any new people or come in contact with people except when going to doctor’s appointments and they are all elderly. My life is pretty depressing and I feel I need a change of scenery to get me motivated again. I am anxious about what is to come and making decisions on my own. I am starting to look at apartments locally now and depending on what happens later on this summer I may be looking elsewhere. I am sooooooo excited and this is the first time in a long time. It feels good. The only thing I am concerned about is when I spoke to my lawyer for disability he was pleased that I lived at home so I will let him know my plans and hopefully that won’t in anyway affect me getting disability. I do need alot of assistance day to day, but I also know that I need to learn to navigate myself through certain situations because sooner or later I will be alone. Reality is scary and it hurts but it’s real.
At this point, I know I’m moving I just don’t know where. I am thinking about moving south while I wait on my disability decision, but then again I want to stay closer to my parents, who are my security blanket. It’s time to let the blanket go, don’t ya think??? With my illness it’s scary as hell to think of getting sick without my parents to comfort me, but it must be done. Literally, as I am typing I am shaking just thinking about not being close to my family. I have to live my life, I have to learn to deal with being sick by myself and depending on myself when I am sick. I know I can do it, I just haven’t had to up to this point. Do it girl……O LORD help me.