People with autoimmune diseases sometimes refer to them as spoonies. I’m sure people on my social media pages are probably like what the heck is that?!? It’s pretty simple for me to explain to someone what a flare up feels like…at least for me. But it’s quite difficult to explain what life with an autoimmune disease is like on a day to day basis. Here’s where the spoon theory comes in. Thankfully Christine from butyoudontlooksick.com gave us this great way of explaining it.
The theory goes as follows:
Her friend wanted to know what it was like. Christine grabbed all the spoons from the table and handed them to her. 12 spoons in total. She explained that having Lupus meant using a spoon for all of the days activities. So you wake up-spoon, make breakfast to take medication-spoon, take a shower-spoon, get dressed-spoon, you guys get the point. Before the day is up you’ve already used all your spoons. If you push yourself and “borrow spoons” from tomorrow, than you just asking for a flare up. This is why if you push yourself one day your paying for it for like three days.
Hopefully this can help more people understand Lupus 💜
My doctor told me back in January that I needed to work out. I gave her the yea ok face! I explained that walking to my son’s school was a work out in its own. She suggested I run it instead of walking. Again ummmm no! Walking had me out of breath, I couldn’t imagine running. And hello I push a stroller!!! This week I decided to do something a little different. I started doing Zumba on my Xbox. Let me tell you…. That workout is hard lol. I’m doing the short class at medium intensity. It’s basically 7 songs in 20 min. But let’s remember that I don’t ever work out. The first day I was only able to do 3 songs. My heart felt like it was going to jump out of my chest. I couldn’t breath. I really felt as if I was in distress lol. That was Monday. I did the same routine on Tuesday. On Wednesday I decided to push musk and add another song. Four on Thursday and today I pushed myself to six songs. These routines workout every part of your body. Yesterday, while going on an errand, I took the train. My train station has three flight of stairs. I did it with the stroller in one hand and holding my littlest one’s hand in the other. At the top, I could still breathe! I mean I wasn’t 100% but it was different than the past. Before I would feel as if I was going to pass out. I was just telling my husband today that I feel better. I have more energy, my pain level has decreased and for the first time since before I got pregnant I feel as if I’m closer to remission. I know it’s only been a week, I’m not an idiot lol. But I feel stronger and healthier. Whether it’s really working or its my mind playing tricks on me, I don’t care…I’ll take it!
For this post I decided to tell you guys a little story. I remembered it from a post someone wrote on FB. I breastfed both my boys. For my oldest I did cheat a little lol. I was doing both boob and formula. For my youngest I wanted just to breastfeed. It was important to me, especially since he was a “premie”. Now I’m not one of those people that tells everyone they have to breastfeed. It’s totally up to each individual. Some people are lucky and can eat whatever they want. My baby however was sensitive so I had to be on a bland diet, just not to mess with his belly.
I wasn’t pumping enough to store. I was able to get him to latch on and then pump a few ounces for me to be able to sleep through the next feeding. One night, maybe two weeks into it, I feed him and put him down. All I wanted to do was sleep. But I had to pump. I needed to get my milk supply up and I knew this would help. So I sat on the couch and pumped. Next thing I know, my husband is waking me up. He’s getting ready for work and the baby is crying. I dozed off!!!! I was drenched! Covered in milk! What I had pumped spilled and my boobs leaked. I wanted to cry so bad. Actually I did cry! I spilled liquid gold!
This isn’t just another lupus story. It’s a story that all new moms can relate to. I don’t know if my fatigue was made worst because I had lupus but I definitely felt like a walking zombie for the first 2 months.
Brain fog is a big symptom in Lupus. If you know me, then you know that I suffer from this bad!!! However no matter what I forget or what I say wrong I always bounce back pretty quickly. This was not the case on Saturday. I went out shopping for some house things, and was on the phone with my sister. It was actually nice to walk around the store and be on the phone because I didn’t have any of the kids with me. As our conversation progressed, I got stuck. Not tongue tied, but stuck! My brain knew what I wanted to say but it’s like my brain and my mouth had no connection. I ended up finding a corner in K-mart and just squatting down behind my cart. The whole time my sister thought I got distracted looking at something. After a couple of minutes I could actually speak. It was the most scared I’ve been in a long time…and I don’t scare easy (I ain’t no punk lol).
I was back to normal talking shit and went on about my shopping. Once I was done I went to go get the kids some lunch. As I waited for my order in McDonald’s, one guy that worked there asked me what type of sauce I wanted for my nuggets. I said duck sauce and soy sauce. He looked at me weird. In my mind I’m like wtf is he looking at? The sauce is over there not on my face! The he said umm would you like bbq? I thought damn that’s what I said. Then I mentally replayed the conversation and realized that I made a slip up. I apologized and asked for the right sauces. I felt so embarrassed! Not because of this exact slip up but because I knew it was going to happen more often. I have now downloaded a bunch of brain games, lol. I need to work out my brain. I’m too young to let my brain turn to mush!
I recently read an article about Lupus health. In this article the author was giving some tips on living a better life with Lupus. One of her tips was to be a good patient. This got me thinking. I’ve always been a good patient. Even before I was diagnosed. I always went to the doctor for regular check ups, I always took any medications given to me and I always followed my doctors instructions. However after being diagnosed, you get into doctor overload. I mean at least it was like that for me. At first you’re seeing your rheumatologist every month at least, plus your pcp add onto that eye doctors, any pt, chiropractors…. The lost can continue. Of course this all depends on your individual case but you get the point. At first I was on point with everything. I never missed an appt. I never missed a dosage, no matter how sick the medicine made me. Then I had my son and had a really big problem breastfeeding. This had all been discussed with my doctors, his doctor and even the pharmaceutical company. Even one was certain that it was safe. However I wasn’t producing as much milk as I would like. I was making just enough but nothing to store. Which was a problem because if I took to long lets say grocery shopping then what was the baby going to eat…my husband couldn’t breastfeed him. My son needed a procedure ad since I had just moved to another state, I called my kids old pediatrician to ask for his advice regarding the test. During that conversation he mentioned that maybe my medicine was giving me the problem making the milk. I mean with my oldest I was a freaking cow. I didn’t bother doing any research or thinking logically and putting him on formula (which I was already giving him from time to time). My mind went straight to getting off the medicine. Obviously I didn’t tell anyone. I don’t even think my husband knew. Needless to say this wasn’t my brightest moment. Whatever reason I wasn’t producing all the milk I wanted really had nothing to do with the medicine. All I did was create a worse environment for my body. I definitely wasn’t being a good patient. Although we may not feel like att this damn medicine is doing anything, it actually is. When your off of it, our body goes completely out of whack. Two years later and I am still dealing with it. I haven’t been able to get into remission yet. So I currently am on my best behavior. Its still hard sometimes because my mind goes to “whats the point? Why do I even bother? Lupus is already attacking my lungs, whats stopping it from attacking my other organs?” During these times I have to remind myself that the medication I’m on is my best course of treatment for now. I have to have faith in my medical team. Anything other than that is letting Lupus win.
Today was D-Day!!! Disability Hearing Day that is. I can not begin to tell you how nervous I’ve been all week. It can be very nerve recking for someone else to decide what they feel you may be fit for. I know I’m being honest about everything. I know that what I live with is life changing however what if it’s not considered “bad” enough for the judge. Well today was the day! I came into the room, my lawyer was there along with the court reporter. And there she was on the screen. The judge seemed very nice and my nerves were immediately calmed. This is my story! My struggle! I was ready to put it all out there. The whole process moved fairly quickly. My lawyer explained that although I’m only 30, I suffer from arthritis all over my body. He then asked me to explain what Lupus does to me. I told her how I feel on a daily basis. How I feel when I have flare ups. I even explained how simple things like tying my shoe laces can be very difficult when I wake up with my hands stiff.
She felt that I fit the criteria for disability. The only thing she needed was my most up to date medical records just to match up my symptoms with what my doctor has. She put a subpoena for those records. She said that as long as it matched up that she has no problem approving my case!!!!!!! So all thats left is for her to receive those records. Im so relieved that this whole process is almost over. I finally see the light at the end of the tunnel.
As little girls we watched all of the princess stories. They all ended one way…she married the prince and they lived happily ever after. What they should show is what happens five years later when the prince is off doing prince business and Cinderella is left to take care of the kids, clean the house and cook. Marriage is beyond complicated. It takes work, patience and a lot of alcohol. Just kidding, it takes a lot of understanding. Throw in kids, daily obligations and one spouse being sick…oh boy! You take your vows and you repeat the in sickness and health part but you always assume its going to be when we’re 70, and its going to be him first, lol. I got dx five years into our marriage and its definitely been a roller coaster ride.
I have been trying to express myself better lately. I realized that I was getting angry with him for not doing certain things, however I never expressed that I wanted these things done. I just figured it was common sense. For example, if the little one has his toys all over the place and you know that I pick them all up at night, then wouldn’t it be smart to maybe do me the favor and pick then up while I’m in the shower. I wouldn’t say anything and then I would come out all pissed off because I felt as if it was a no brainer. Well men are built different from us. They need to be asked to do things. So now instead of screaming like a lunatic and cussing all over the place, I have decided to ask him. I told him just the other day the things I feel I needed from him. I explained that this isn’t a “normal” marriage. I’m sick. I can’t help that. I wish I had an erase button but I don’t. So we have to play the cards we’ve been dealt. I told him how sometimes he says things that I feel are a little insensitive. And ladies and gents he actually listened to me. I had to take the big boy to the dentist today and when I got back home my house was nice and clean. Now don’t get me wrong, my house is usually clean, but the baby can make a mess so sometimes its in a bit of disarray. Not today!!!! Holy Shit! The toys were all organized, the kitchen was clean and he even vacuumed! I guess my talking actually was heard, rather than my yelling. I know none of this is easy for him either but I’m happy that he’s trying. Maybe they should show that on one of these fairy tales!
One of the hardest things that I have to deal with when it comes to Lupus, has to be the sleeping problems. It’s like all day long all I can think about is going to bed. And I can probably doze off if the baby takes a nap. But at night my torture begins. I try to be completely ready to go to bed when the kids go down. But for some reason I don’t actually fall asleep until about 2am. Then I have to wake up at 6:30 to take Vida to school. The minute I lay down, it’s as if all if the days efforts and weighing me down. I feel the pain that I had already been feeling during the day magnified. Everything bothers me. I’m restless and it’s the worst feeling in the world. In the a.m nothing works. Coffee doesn’t even give me a wake up buzz. So I’m left the whole day in a bad mood, tired and annoyed. All I want is a good night’s rest but it seems that that’s going to be impossible…at least without any sleeping aids.
I have come to realize that how people react to you isn’t necessarily how they feel but more dependent on their fears. Since I was diagnosed I have always been upfront with everyone around me about Lupus. Upfront in a sense of telling them about the disease and what it means for my life. Some people who are close to me stood close. They support me. They help me. They ask questions and understand the disease and its complexities. One example of this is my cousin. We were at a gathering in her sister’s house and she was sitting next to the radiator. When she got up I took her seat and she asked me “oh, do you feel cold?” It was freezing out and one of the windows was open. Right away she caught herself and said “oh duh, like Im one of the few people that doesn’t need to ask you that!” She is one of the few people who doesn’t shy away from the subject and who knows exactly what Lupus does to me. She knows that I suffer from Raynuads and that feeling cold isn’t a good feeling for me. Then there are people who may or may not have been close to me and don’t really understand the disease, but they don’t really feel like they have to since its not affecting them or someone close to them. Then there are people who are close to me but may not want to know all the messy details. I realized my aunt is in this category. This particular aunt, is like a second mother to me. She has gone to appointments with me, constantly calls me and even see’s me at least once a week. But I feel like she had a break through yesterday. She was telling me about how her and a co-worker were talking about their families. The co-worker mentioned that her parents had both died…one from a car crash and one from Lupus. At this point my aunt’s eyes looked glassy. Ok, time to calm her down. I explained to her that it means that she died from Lupus related complications. So if she had a heart attack, the heart attack killed her but the heart was probably weak due to the Lupus attacking it. Hence she had Lupus complications. Later on that day I was showing my mom a letter that my doctor had written stating all my symptoms and when my aunt heard arthritis, she said “you have that too?!” lol Yes I have arthritis all over my body. This isn’t new. But I get that she is there for me but it might be too much to fully understand the what could be’s and the what are’s. I mean after all she does look at me like a daughter. So she probably didn’t want to fully get it. Because then your mind goes to what can happen. Either way, I have a large support group and I am extremely grateful for that.