Old sdloopy posts – Another Fun Filled Lupus Day


Another Fun Filled Lupus Day

Yesterday was another day of battling my Lupus flare. It was somewhat manageable in the morning as I helped clean my sister’s place. I was doing ok but not after too long, the fatigue and pain had let me know they were here to stay for the day. Soon, each individual step was hard to take. I plopped down on the couch and let my head fall back. I have completely no energy. Even the easiest task of keeping my head up was exhausting. I mentally debated if I should go to my friend’s wedding reception that night. This would be my third wedding missed in a row due to my Lupus.

I wish for a cloudy, stormy day. This heat and sun only make me feel worse. Which is ironic because it is usually opposite for everyone else.

Storm looks at me with her big, brown, puppy-dog eyes, asking if I will play just one more time. But she already knows the answer. I get on the floor to lay down, curling up next to her and try to take a nap. It’s funny how as child, that is the last thing you want to do but once you’re an adult, you want to take them all the time. Well, it’s that way for me anyway. The nap is a failure and I become agitated.

I called my mom to vent and began to cry (while making a mental note to see my therapist next week). I cant decide if I should put myself through the extra pain and exhaustion for the reception. I feel guilty and feel like a bad friend.

“I’m sure they understand,” she stated. Which made me think, ‘But do they really?’

She helps me see past some of the denial and I now see (and know) that I should stay home and take care of myself.

I start wondering what I will have for supper. The only thing I am craving is a turkey sub from Mr. Goodcents but I have no idea how I will get one. My small meal isn’t worth having them deliver it to me. I start to ponder if I could ask Mel to go or if she would even go for me. I throw that idea out the window and begin to start talking to myself, pointing out that the trip would only take a couple of minutes.

Motivating myself does not work which means cooking something is clear out of the picture. I realize I need to figure something out since I never had any lunch. So, I open a can of fruit cocktail and wait for tomorrow to enjoy a meal.

I haven’t lost all hope that I have to miss the reception and try to nap a second time. And I finally fell asleep! I still have my symptoms but they seem to be giving me a break. E comes to pick me up and we go to the reception, or so I thought.

We arrive at the Japanese Gardens and listen to its’ silence. We expected to hear music, people talking, and laughter so we figure it must be further into the garden. We walked all around and didn’t find anyone. I texted the groom where the reception was but didn’t think he would reply. But I tried just in case. E brings me back to my temporary home, at my sister’s, and we spend the rest of the night listening to E tell high school stories.

When getting ready for bed after E left, I noticed a text from the groom. By this time I knew there was no possible way to make it while trying to stay awake and driving at the same time (sorry Shane!!).

I have to learn to stop trying to please everyone and take care of myself first. I need to realize on my bad days, not to keep pushing myself and stop being such an overachiever.

Sometimes in the back of my head I wonder if I have “fully” accepted my Lupus, or just think I have…


19 thoughts on “Old sdloopy posts – Another Fun Filled Lupus Day

  1. With chronic illness, it’s so difficult to find balance in your life. It’s a constant readjustment, based on your physical (and emotional!) condition, which can vary so much from day to day. Don’t be too hard on yourself!

    1. Thank you so much, I will try to get to it when I am able. I have my good and bad days. Just have to learn to take one day at a time (which I’m STILL learning.Lol!).

  2. I have been diagnosed with so many different auto immune versions of connective tissue disease that I don’t even give it a name anymore (1994 or 5). A few days ago I knew a flare was staring. I blame the accidental gluten that crept into my lunch at the Deli on Saturday. Always starts the same place, my right wrist, then the knees, the ankles, and everywhere tissue holds me together. Non-chronic pain people don’t understand that you can’t always push through. Eating is important though and you need to have more food on hand. I know because I make bad food choices (too much sugar) and I suffer. Have to have cataract surgery in a few weeks (thanks to the prednisone for years) and I am feeling blue. The dogs force me to get moving and walk most days, they are a gift. The cats keep me amused. Be gentle with yourself. It does not matter what others think when you are taking care of yourself. You can do this. You are doing this. Contact me anytime. – Lorian of DogDaz Zoo

    1. Thank you kindly for the nice words! Yes, I know how important it is to eat healthy. Unfortunately being on Soc Sec, you’re not able to purchase a lot of healthy food. I also enjoy my sugar. Lol! I’m sorry you have to have cataract surgery! 😦 Prednisone is so nasty, I would rather suffer than go back on that stuff. I’m not sure if it’s same thing but one of my Lupus friends had to go off that because she is now half blind from it?? Yes, those darn dogs–haha! When you are depressed, it’s even more difficult to take them out or play. That’s how I know when I’m really bad, when I don’t even care about making Storm happy. 😦 Well, know that I am thinking of you! Maybe one of these days I might take you up on your offer! 🙂 Be forewarned though, I will probably need to vent! Lol!

  3. I know all too well, about chronic illness and chronic pain. I have a very long list of diseases and conditions. I’m told I have an auto-immune disease, but they just don’t know which one. The one common denominator in every one of my diseases, that’s pops up in every search I do, is “Lupus” So many doctor’s, so many body systems involved. No one wants to put it all together, and look at the big picture. They each want to focus, only on their specialty, at the expense of my health.
    Nutrition is important. I have a feeding tube because one of my lovely diseases is Gastroparesis.
    It’s aggravating, always feeling like no one really believes that doing something as simple as going up and down the stairs to do 2 loads of laundry will cause a flare, or if I’m already in a flare, it only makes it worse. Something, so simple to the average “joe” can put me out of commission for days, weeks, and even months…………..I find a lot of support, right here, at WordPress……………so many other’s, like me……………..Take care. I hope today was a “better” day for you. xx 🙂

    1. Thank you for the wishes, unfortunately I have been in a flare for about a week now. But at least it’s pain I can somewhat tolerate. I might take some Percoset to try and stop the pain cycle.

      It sounds like you need different doctors! Although to the doctor’s credit, Lupus is VERY difficult to diagnosed and most patients get diagnosed for years. Thankfully, my doctor had an idea right away so I didn’t have to go through that hassle. Hmm do you see a Rheumatologist?

      Hmmm so will the Gastroparesis ever get better enough to where you can eat food again? I don’t know anything about the disease.

      It is VERY frustrating how the simplest things take so much out of us. It helps to have a good support system. I have family help but my so called “friends” have proved how much I actually mean to them. So I really no longer have anyone to hang out with. But I have also found supportive people on WP. 🙂 It’s nice to find someone who can truly understand what you go through. Take care and I am sending pain-free juju your way! 🙂 xx

      1. I’m so sorry you’ve been in a flare. I’ve actually been flare free for a few days, now. I’ve been trying to get up and do some stuff around here, so I know what’s waiting, right around the corner, for me. I’m used to it. Still sucks………..I do have a rheumatologist. She’s one in the top 5 in the world. All of my doctor’s are good doctor’s, finally. It took forever to end up with this team of doctor’s…..Trust me, I’ve been to hell and back. I’ve been to the Mayo Clinic, in Rochester. Big waste of money and time, of which I had neither. The problem is, I have so many disease processes going on, involving so many different body systems. Most doctor’s only focus on their body system. I just wish I could get the rheumatologist to look at the big picture. To put it all together. Not everyone tests postive to the Lupus markers. Most people do not, in fact, because there is no REAL test for Lupus. If you have these markers, it makes it a whole hell of a lot easier to get the diagnosis. I did test positive to one, can’t remember what it is called, but I had to be re-tested 90 days later, I believe it was, and had to get 2 positive readings before getting the official diagnosis of LUPUS. My body is attacking itself, organ, by organ. The butterfly rash is across my cheeks and the bridge of my nose, more days than not. I’ve really been noticing it a lot, lately. I have all the classic symptoms……trust me, I do not want to have Lupus. What I want is a proper diagnosis, so I can start getting the proper treatment and have doctor’s taking certain symptoms serious, like they do. They all say and agree that I do have an autoimmune disease, they just can’t pinpoint exactly which one. Okay, look up every one of my diseases and see if you can be as smart as me and see that the one common denominator, always present, LUPUS! It’s very, very frustrating…………I’ll probably get diagnosed on the autopsy table………it is what it is. Maybe, just maybe, one day, a light bulb will light up inside one of these doctor’s heads and they will put it all together.
        The gastroparesis will not go away. It kind of goes into remission, kinda like, for short periods of time, from time to time. Just when I think it’s gone for good, it reappears with a vengeance. I can eat small amounts of food by mouth. I can tolerate softer foods much better. Ice cream, yogurt, soups, pasta, stuff like that. I cannot have most fresh vegetables, they must be cooked, and softened up. I must have low fiber…..another thing I have is IBS. This is really difficult because the gastroparesis diet is the complete opposite from the IBS diet. Hmmmm kinda in a bind. My entire digestive system is diseased. Starting with my esophagus. I have esophageal motility disorder, gastroparesis (paralyzed stomach), low motility in the intestines. Constipation, mostly, because of the gastrointestinal problems and the pain medications. If I’m not having that issue, which is horrible, by the way. I’ve gone 3 weeks, without going to the bathroom before. I get so distended and end up in the ER. You talk about being miserable. now, if I don’t have that problem, I have diarrhea…..just gets better all the time. LOL that’s not a good thing to have when you are out in public and cannot get to the bathroom fast enough. there’s no holding it in. There is no in between. With gastroparesis, the vagus nerve in the stomach is paralyzed. The vagus nerve is responsible for motility. it’s what moves the food out of the stomach and into the small intestine. Say I were to get up in the morning and eat a small meal. Lunch would be next, and I’d go to eat another small meal, and take just a few bites before feeling so full and bloated and nauseated………….It causes delayed emptying. The food sits in my stomach for 6 or more hours before emptying into the small intestine. A normal person’s food will exit the stomach and be in the small intestine within 90 minutes of eating…………..So, I do tube feedings, mostly. I try to eat yogurt, ice cream, soup, just something, sometimes because I don’t want my stomach to get totally paralyzed. It probably will anyway, but the use it or lose it rule is usually pretty accurate and I do not want to have to go to Georgia, as one doctor suggested, to have my stomach, completely removed. he said they would make me a small stomach with part of my small intestine. It would be a very radical surgery, I was told. And, that doctor said that he believes that this one hospital in Georgia has the best team of GI doctors in the country. When I got my first feeding tube in 2010, I almost died just from that surgery. I really don’t think I would survive any radical surgeries. now, if I had stomach cancer or something, it would maybe be worth the risk, I really don’t know, even then……………I’ve had this feeding tube since July, 2014. I’m assuming I’ll have it forever…………..without it, I’m always dehydrated and malnourished, in and out of the hospital, so……………………………..and that’s only one of my problem’s. Ain’t life grand?????
        I completely understand what you mean about the so called wonderful friends that are, now, nowhere to be found. It’s sad because I’ve always been a very social butterfly. Friends, talking to people, is my livlihood. I do still have a few, very, very good friends, but they aren’t always available for me and they don’t live right around the corner, either. They work full time jobs. I’m permanently disabled and have been for about 5 years now. I loved getting up, every day M-F, going to work, and being around my “work family” I get so tired of hearing people tell me how lucky I am that I don’t have to get up early every morning and go to work. I tell them, I will trade places with them any day. I will give them all my diseases and pain, and they can lie in bed all day, most day, and pretty much only get out to go to all the doctor’s visits I have each and every week, and I’ll happily get up every morning and go to work. Done deal…..I wish……………I think the next person that has the nerve to say that to me, just might get punched in the face. I’m not a violent person, no worries, it is just so very difficult, as you already know, all of this…………one thing that I can tell you, is I do have so many awesome FRIENDS, right here, at WP. I skype with some of them. Australia, Scotland, all over the united states. And, they all understand me and I understand them. Best support system, next to family. Blogging turned out to be one of the best things I’ve ever done. If I hadn’t started a blog, I hate to see what might have become of me because I cannot just be here, by myself, all the time, with no interaction from other humans………………………….Thanks for the pain free juju………………….I received it and it’s working. Now, I’m going to send you a ton of really good, strong, healing energy………….I have a friend in Australia that always sends me an abundance, so today, I share it with you. I hope it works. Take care. I look forward to talking with you some more……….hope you get to feeling better…………….. hang in there, you aren’t alone…………………….I know, it still sucks…………………Peace. XXX 🙂 🙂

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