My entire world is about to implode, and I feel like there isn’t a damn thing I can do about it. I have no idea how to feel. Half my body has little feeling today. My legs are throbbing, and my feet feel broken. I can barely walk, and my insides feel like they are balloons too full of air. My head is pounding, and I can’t stop crying. The edema is out of control today, and I am insanely emotional. This flare is awful, and I can’t figure out what to do for it. I am going to lay here and feel sorry for myself, as there is really no other choice. I took the meds I can take, and I don’t dare take the pain meds, as my children are running around insane. I need to at least be awake to give them direction. Today I am miserable. I have no idea what to do with myself.
It has been a rough week for me, and I can’t even begin to explain everything I have felt. There are so many things that have run through my head, and so many emotions, I am exhausted from turmoil and relief at the same time. When you are in the diagnosis process for illnesses that seem to be one thing, but turn out to be another, it is such a frustrating thing to endure. Last week I had blood drawn for an ANA test, considering I have multiple symptoms for the disease lupus. Come Monday morning, I was informed that all tests were negative, and my immune system is actually looking pretty great right now. The Dr requested that I come back in and have my treatments readdressed. He would like to discuss a few more things with me that have not been gone over previously. I was unsure of what he meant, but I assume that he was going to look at other diseases and illnesses that I might possibly have. Safe and accurate assumption.
Once I was in the office, my Dr looked at me with distress. He reviewed the blood tests, and let me know that they have improved quite a bit over the last few months, and he might eventually start weaning me off some of the meds to see if my body can handle that. However, he is concerned about the body wide pain, and the edema, so he doesn’t want to distress my body again. We went over some of the possibilities, including that perhaps there is another hidden type of auto immunity, as the ANA did not rule out the possibility of additional rheumatic illnesses. Again.. however.. he does not think that is what it is. With a sigh and slump he started to go into an explanation of how the brain perceives pain, and how the nerves work. He explained the relation of nerves to bone pain, and additional joint pain. Confirmed that the arthritis in my knees is going to cause me to need surgery one day, and there is little I can do to stop it, though I can slow the process down, as previously discussed. At the end of the explanation, he recommended that we start treatment for, but do not diagnose me yet, fibromyalgia. He put me on a new medication, and explained that this was something that should help with the pain if it is neurological. We are going to start off with 350mg, and go up to 1200 over the next 5 weeks. If it seems to be helping, I will then be referred to a neurologist, and he will begin the process of diagnostics for fibro. If it does not work, we will take steps for other diagnostics.
As for the edema that I tend to suffer almost daily, he has no explanation for that. Everyone’s body reacts differently to stress, and it may be that this is how my body is reacting to the pain I am suffering. Since I increased my salt intake, my sodium levels have evened out, and are looking fantastic. There should not be edema from sodium issues. My kidneys are looking good, and I have general normal functionality of all my organs at this time. I simply need to keep taking in as much salt as I can in general, and increase it when I see additional edema on top of my unexplained edema. If this does not work, we will look into other ways to address my edema, but he also wants to keep me on the current diuretic I am on, as it seems to be helping.
I know that to some this seems like good news. At least it is not lupus, and I am not going to suffer the additional ailments that would come along with such a serious autoimmune disease. Trust me, I am very relieved. But the relief was very brief, as the possibility that this will be a pain that will likely never subside, but continuously affect me over time. It is still a lifelong illness, and still a pain that is going to add to the already effective pain from my arthritis. Fibro is very unpredictable, much like autoimmune diseases, and the pain can fluctuate with the weather as well. This would explain the deep bone pains, the aching, the fatigue, headaches, muscle sensitivity, etc. There are so many different illnesses that all have the same symptoms, it is quite a frustrating and painful process to find not only what is causing these ailments, but also how to treat them. It is not only exhausting as well, but so very expensive! As a single mother, I am having the hardest time keeping up with all of the bills I am acquiring and receiving. I can’t recall which bill was for which hospital, or which Doctor. What bills to look over for errors, and which have been paid already. I am doing this all by myself, and over the last month, it has become overwhelming. I have no idea how I am going to keep this up. How long do I have to do this?
After I left the office, I went to the pharmacy (where they happen to know me by first name now) and picked up my new medication. The look on the face of my pharmacist was the same look I got the last time we added to my meds. He has learned not to crack any jokes, or make any comments, as he will get a snippy/sarcastic response from the already irritated woman in front of him. When I arrive for refills, there is a pleasant exchange of words, however NOT when I am picking something new. Is it sad that is also known by him? I feel like it is. I shouldn’t dwell on things like that, however I cannot help it. Once I got home, I walked through the door, up the stairs and laid on my bed, face down. I slipped out of my pants, and slid a long cotton skirt over my tired legs. This is something I have gotten into the habit of lately. I either slip into a pair of cotton pajama shorts, or a skirt, depending on my mood. That day I was already feeling exposed, and I needed a sense of comfort. My oldest daughter was home and noticed that I was not so pleased. She offered to walk the 5 blocks to the daycare where my two younger kids were still playing and bring them home. I nodded my head, and without saying a word, she left on her errand to fetch the babies. I hate crying about things when my kids are around, and I hate feeling sorry for myself, however I could not help it. Once again, I was feeling like we took a few steps forward, but one step back. I think I shall refer to this as the “Diagnosis Dance”. A painful waltz where you are never the leader, and have no choice but to stand on the feet of your illness, be spun around, dipped, and thrown about in ways that turn your stomach. I don’t want to dance anymore. I just want to sit this one out, and rest my body. I am so tired of dancing.
For those of you who read my blog (or read my last post at least) you are aware that I recently had an MRI, which was a horrible experience! I awaited the results, and actually got them back on Thursday, the day after, but I haven’t had time to post about them. I also decided to talk to my PCP about the results on Friday, as I had an apt with him anyway. Here is a summary of the problems:
Right Knee: Hematopoietic red marrow of the metaphysis. Mildly increased signal in the distal aspect of the posterior cruciate ligament, consistent with chronic spraining. There is no joint effusion.
Left Knee: Focal high-grade thinning of the articular cartilage on the weight bearing surface of the lateral femoral condyle. Hematopoietic red marrow of the metaphysis. Cystic degeneration versus chronic delaminating intrasubstance partial-thickness tearing of the anterior cruciate ligament. Mildly increased signal in the distal aspect of the cruciate ligament, consistent with chronic sprain. Intermediate signal and thickening of the lateral collateral ligament particularly proximally. There is small joint effusion.
Now, I pretty much have no idea what this means, except that it is not surgical, and I was told to take it easy. No bearing any extra weight while bending the knees. No bending the knees while standing to/or past a 90 degree angle. No running. No jumping. No activities that require weight bearing, fast joint movement. Basically.. I can walk around, sit, and stand. No weight bearing activities for long periods of time. So short walks are the only kind of walks I can do. The only exercise I am allowed to do with my legs is stationary bike riding, however not meeting or exceeding a 90 degree angle, swimming, and very short spurts on the eliptical. However, if pain occurs, I am to immediately stop and ice my knees. Also, I need to lose weight.
Now, let me tell you a little bit about my weight. I have increased in size over the last 6 months by 50 lbs. FIFTY pounds. No diet change. In fact, I eat more fruits and veggies now than I did before. I can not eat any type of breads or other such carbs, as I have celiac disease. If anything, I should be losing weight, and my Dr can’t explain why I am gaining weight. Talking with my sister (who has lupus) this morning, she explained that she has had severe unexplained weight gain and loss. Mostly weight loss, but that was when her lupus was at it’s worst, and she has yet to gain the weight back. In one month she gained 30 lbs, unexplained, no appetite changes, and no edema. She also lost all the weight, and then some, in about 6 months. No change in appetite or diet. Nothing. Just another sign and symptom of lupus. Now, I am not saying that diet and exercise is not going to help, because I am aware that it will in general, but I am saying that this is a bit ridiculous when I have limited abilities to exercise. I am a single mom of three kids, work full time, have RA, and likely at least one form of lupus or other illness. (I do get my blood tests back either tomorrow or Tuesday) I have mild to severe flare ups at least once a week, and I barely have enough energy to handle my life right now. I can’t have energy drinks, as they make me sick, and for the last week and a half I have violently expelled over 90% of the food I eat, vomiting within the hour of consuming it. When I do get it to stay down, and it exits the way it is supposed to, it tends to also also have a bit of blood with it. I have gained seven pounds. I have no idea how this has happened, but I assume my body is trying to hold onto everything it gets, though it is the one who rejects it. I would much rather hold my food down. How am I supposed to lose weight? Please tell me, because I would LOVE to know.
The damage to my knees has been accounted to the rheumatoid disease, and though there is nothing they can do about it right now, it will eventually destroy my knees and I will need to have surgery to correct the issues one day. That is, unless I never use my legs again, and then the chances that I will need surgery one day goes down quit a bit. Maybe I will invest in a jazzy and never walk again. HA! That would be funny. But I digress. My body is slowly falling apart, and though this may not seem to be a big deal, it is a big deal to me. I am aware that it COULD be worse, but the fact that it is this painful already, and it is only going to get worse is a bit hard for me to swallow. I have muscle spasms, locking of the joints, problems walking at times, and pretty bad pain. I have to treat my pain daily with pain medication, and I would much rather not. I would much rather be able to be a normal 28 year old, and not have to think about my legs’ functionality. It’s quite discouraging.
I am not going to pretend like I am ok, or that I am traumatized. I am just.. sad. I am upset, and that is ok. I had a terrible flare on Friday night, and was having the hardest time even moving. I was able to work a full day, and make it home. As soon as I was home, I changed into pajama pants and laid on my bed. My legs throbbed with pain, and I was on the verge of tears. The thought of what is going to happen to my legs, regardless of what I do, was nothing short of heart breaking. I called my sister, who watches my girls from time to time, and begged her to come get them. I explained I was stuck in bed, my girls were fighting and screaming none stop, and that it was likely that not only did I need a break from them, they likely needed a break from me. I know that regardless of how old my children are, when mommy is sick, it stresses them out as well. They know when mommy is upstairs in her bed when it is not bedtime, that I am not just hurting, but I am hurting very much. She agreed, and headed down to pick my girls up. It was a HUGE relief.
Once she arrived, I felt comfortable enough to take pain meds, and a muscle relaxer. I knew it would make me loopy, and I didn’t want to have my kids running around “unsupervised” for hours on end, so I waited until I knew they were leaving. Once they were out of the house, I let it slip. I sat in my bed, and I sobbed. I cursed the universe, and I cursed my body. I looked around my bedroom. My messy, messy bedroom. Clothing all over the floor. Dirty.. clean. Mixed together. I used to be the cleanest person, and now I don’t even have the energy to fold my laundry, hang it, or even put it away. I have to keep my children’s laundry in my bedroom as well, as they love to play dress up and WILL do it daily if they have access to their clothes. I thought of my bathroom. My kitchen. My basement. I remembered the words Jeff spoke to me; “I hope any guys you meet like hearing your kids scream all the time, and hanging out in your disgusting house!” I sobbed even harder. My knees are ruined, and I am not able to clean my home now, how will I be able to do it in the future? How am I going to do any of this? My body is slowly falling apart, is only going to get worse, and I can barely function enough to support my family now. What is going to happen to me and my kids when I am too ill to work? I posted a blog last week labeled “When Not If” keeping myself positive about my brother, his move, and his illnesses he suffers. Today “when, not if” means something totally different. Today it feels hopeless. It feels like inevitable doom and chaos. When I am too sick, because I will be. When I am not able to walk, because I won’t be. When my hands not only slightly shake and ache, but are almost completely unable to function.
Once the pain meds kicked in, I decided to enjoy my night off. I grabbed some icecream bars, candy, and popcorn and I sat myself in front of my tv. I stripped down to a loose cotton skirt and tank top (as my legs were too swollen for pants), and started to grub. After about 30 minutes, I got a text from my friend Ryan, and we decided he should join me in my self destructive quest to fatness. As depressed and upset as I was, and honestly still am, I decided I needed to enjoy my weekend. I allowed myself another good cry in the shower, but told myself that I had to stop when I got out. I sobbed and sobbed while I washed my body. I choked on my tears while I washed my hair, scrubbed my face. I sucked it up when I got out of the shower, and held back my my emotion as I applied my topical treatment for what is likely discoid lupus. A sticky steroid ointment, and some antibacterial cream that was prescribed to me the previous day. I stared at my bloated body and thought about my 4 am awakening, and hour that followed of me both on and in front of the toilet. Remember, my body refuses to accept food right now. I stepped on the scale, and scoffed at the number. Gained another three pounds.. over night. I did not cry. I blow dried my hair. I did not cry. I stared at the butterfly rash on my face, and tried to convince myself that it was from the tears I shed earlier and not the possible lupus. I did not cry.
Packing up my pills, and clothes for the sleepover visit I was having with my sisters that night, my knees ached and both legs were too swollen for all of my pants, but one pair. I forced myself to wear them, and told myself that I was going to have a GOOD, normal day, regardless. I was NOT going to take pain meds until the pain was unbearable, and I was stationary for the night. I had a long day of picking up my kids, going to a birthday party, visiting my mom and grandma, and then driving out to my brother and sister’s house. (My brother helps my sister Mary by letting her rent out a room in the basement) I told myself that I was going to eat like I was fine, and not let myself get upset when I throw it up. I told myself that I would fight to keep my food down, and I would force myself to move around as much as possible. I would ignore the swelling as much as possible, and just push through the day. WHEN I am unable to do all of these things, I will be grateful that I made myself do them when I still could. I will love myself for trying. Love myself for not giving up, and not only letting this illness kill me, but letting it kill my spirit. I SHOULD allow myself to cry, but then I should allow myself to also be strong. And I did. And I had a GREAT day! I vomited twice, and I was in a lot of pain, but I had fun. I very much enjoyed myself, and when I was finally able to give myself my pain meds, I was not only relieved, but I was proud of myself.
I spent today sitting with Mary and discussing our illnesses. I love having my “built in support system” (to quite a wise and lovely lady), though I hate that she is sick. I love being able to have her understand, and not think I am a hypochondriac. Before I was ill, I tried to be as supportive of Mary as possible. Mary and I have this special bond, and for some reason we always have. We have had multiple siblings get jealous and frustrated with us, not understanding why this special love only exists for each other. It is not that I love her more than any of them, as I don’t, there has always just been this.. way about being around Mary. She is my best friend, and my sister. I have always understood her, and she understands me. Now we understand each other on a whole new level, and as much as I don’t want my sisters to feel more left out, they do. I can’t help but want to spend every minute with Mary talking about what I am going to deal with in the future. She examined my sores. Felt my cysts under my skin, and told me about how they progressed for her. She told me how she made dealing with the pain easier, and how she managed to keep going in general. I did not cry. I know my body is falling apart, and I know I will be great at time, and I will be awful at times. I know I am going to have hurdles I won’t know how to handle, and I am going to fall down. A lot. I am going to struggle. I am going to cry. I am going to feel hopeless and alone, and I am going to want things to be different. I am also going to get back up. I am going to laugh. I am going to get through it, because that is what I do! Because I am a mom. Because I am a sister! Because I have birthday parties to take my kids to! I have family to visit! I have games to play, and pictures to take, and I have a life to live. I know it is going to be hard, but it will also be wonderful. I just have to keep going.
Just keep letting it wear down.
Anyone who has a rheumatic illness knows that one day your PCP is going to recommend you also start seeing a Rheumatologist. Yesterday was my day. I have had a pretty intense week, and I plan on filling you all in on this post, but I must preface something. I am very VERY sick today, and have many plans with family that I am going to try to keep, so I am going to go into my MRI today, and my results/Dr appointment tomorrow.
Let’s start off with Wednesday’s MRI. I have been vomiting at least twice a day since last Thursday, and Wednesday wasn’t any different. An apple, skittles, coffee, poweraid, and a banana all decided to jump ship that day and come back up anywhere between 5 minutes to an hour after being consumed. Needless to say, I was weak, tired, and sore. Arriving at the imaging center at 5pm, I walked in to an empty office, the sound of people laughing in the distance. I stood there for about 30 seconds before I called out to them. No answer. I had never been to this imaging center, and the waiting room seemed a bit small. Maybe I went in the wrong door. I exited the building and limped my way around to the other side. No door. Going back in the sliding doors, I could hear a woman laughing. I decided to venture behind the counter and peek down the hall I could hear the noise from, by thing time being about 5 minutes after I had arrived. “HELLO?” I called out while I turned the corner. There, sitting in chairs was male nurse, and the receptionist. Laughing. Hanging out. How professional.
We are going to skip the registration, and changing into the scrubs I needed for the MRI. Once inside the room the sweet faced technician helped me onto the bed and explained the procedure to me. She cracked a few jokes, obviously to make me feel more comfortable. Stuffing pillows all around me, and asking what music I wanted to listen to during the procedure, I realized she was such a pretty woman. Maybe about 32 or so. The look in her eyes made me feel as though she was a mother, as most people in this world can’t get that twinkle in their eye until they have felt the unconditional love for a child. This was very comforting. Slowly sliding into the MRI machine, the music came on. Not exactly what I was expecting from “Rock”, as it sounded more country, but ok. I was very comfortable, my left knee strapped inside a little box that would keep it from moving allow for the MRI to do it’s job.
I closed my eyes. Everyone I had talked to about getting an MRI said that it was relaxing, and they were actually able to fall asleep. I figured it would give me an hour or so without my babies to take a nap, and rest my poor tired bones. I heard the loud throbbing of the machine, and the vibrations begun. To my surprise I could actually feel the magnetism inside my legs, especially the one strapped down. Odd. I didn’t know you actually felt it. I closed my eyes again and tried to relax my body. I couldn’t. Opening my eyes I tensed my muscles. Nothing happened. I relaxed my muscles. Nothing. What the hell is going on? I felt the throbbing of the machine slowly moving up and down my body, the vibrations slightly shaking me, and that is when it hit me. The movement and magnate are making it so my muscles won’t relax. My muscles have been increasingly sensitive lately, to the point they have been often seizing up on me. I figuring laying here wouldn’t be problem. I sleep after all, right? What’s the difference? Movement. When you sleep and you need to move your muscles due to pain or irritation, your sleeping body will often adjust itself to relieve the pain and keep you sleeping. I am know to move in my sleep a lot due to this lovely thing happening inside my body. When I sit at my desk, or anywhere else, I often move my legs around to keep them from hurting. Realizing that I can only sit for so long without shooting pain, it hit me. I am laying in a vibrating magnate and I have to hold completely still for an hour. Shit.
Closing my eyes again, I tried to take my mind off the discomfort by listening to the music. I didn’t know the song playing in my ears, and I found it to be more irritating than relaxing. I felt my hands tense up and my arms begin to ache. Moving my arms from laying across my chest to above my head, this relieved the pain. Suddenly there was something I didn’t expect. Shooting pains. Through both my legs! My eyes shot open, and I gasped. I could feel my heart rate increase as the pain shoots through both legs. From my toes, to my knees, up to my hips and vibrating through my lower back, it felt like something was cutting through my bones, my veins, the tissue of my legs. They suddenly felt very heavy, as though they were dead, I had no control and no feeling except the stinging pain that burned inside me. I took a deep breath through my nose, and let it out slowly through my mouth. I moved my hands, clasping them together over my face. Breath. Just breath. It is just in your head. You are fine! They said you could nap. Just nap. Ignore the sensation. It’s not pain, just different. You are fine. As much as I tried to pep talk myself, nothing helped. I used the breathing techniques I learned when I was in labor with my children. I pushed through each wave of pain. Each knife through my legs. I want to say that I was strong! That I did a great job, and I never faltered, but that would be a lie. I fought back tears. My body was so tired and achy, and now I was paying over $1500 out of my pocket for this torture. With each wave, the pain increased. A few tears fell from my eyes, and my heart rate thumped faster and faster. I could feel the panic inside me, and realized that I, 28 years old who has been through hell and back, was having a mini panic attack inside an MRI machine. How terribly embarrassing. My mind ran across squeezing the button she gave me to stop the MRI, and take a break, but I was too stubborn. I needed to get through this!! I CAN GET THROUGH THIS!! Such a stubborn woman, I am.
I know that the sweet woman noticed that I was having a hard time, as she started to pipe in, and I heard her through my headphones. Thirty seconds on this one, and then five minutes on the next. Two more sessions to go before we switch legs. Oh thank god! I counted in my head as the throbbing and stabbing took over my senses. Stared at the tiles on the ceiling, and forced myself not to move. I wanted to kick my legs and scream. Kick the knives out my bones! Get all those tiny little blades out of me, and cry. But I didn’t. I stuck through it. I made it. I cannot describe the relief when I heard the machine shut off and her voice come over the fading music. All done with this leg! YES! Dear lord, that was hell. She came back into the room, and seeing the concern on her face, I could tell she was worried about the next session. I realized that it had been about 40 minutes since I entered the machine, which means she was giving me longer breaks than expected between scans. I wasn’t sure to be grateful or to be irritated that it was going to take so long, and she should have just pushed through it faster. I knew she was nervous about putting me back in as she removed all of the padding around me, and the torture box from my leg. I smiled at her.
“That was much more intense than I expected. I need to get up and walk around. I am sorry, I am having an RA flare today, so that was actually quite painful. Do you mind giving me a few minutes to recover before we go again?”
She smiled at me and assured me that we could take as long as I needed for anything. That we could even take a break after 15 minutes. Or longer between scans. I asked her for more upbeat music, as when a few of them came on, I had an easier time focusing because the beat moved in tune with the machine. I think if I felt like maybe music was flowing through me instead, maybe I could handle it better. I stretched my legs, the extra large scrubs bagging off me, making my feet look as though they belonged to a small child. After a few deep breathes, I got back on the table. LET’S DO THIS SHIT! I thought to myself. She slid me back into the machine, and turned on the music. UPBEAT music that I knew the words to. Soooo much better. The pain was just as severe, but my ability to handle went up ten fold when I could sing along to the pain inside my body. Never had much faith in love or miracles! Never wanted to put my heart on the liiine! I told myself I was dancing inside. I love to dance, but have lost the ability to do so since my knees got so bad about 5 months ago. I can do a little knee bending and hip shaking, but only for so long before it hurts, and I always suffer the consequences later. I find that stupid.
After the MRI was over, I got dressed and headed back home to get ready for my date with Ryan (who ended up canceling because someone side swiped his car earlier, and he was very shaken up and vehicle free). I limped my way to the car, pain shooting through my legs with each step. Pushing in the clutch, pain shot through my body. I sat in the parking lot for a moment, and looked at the time. 7:08. I had arrived at 4:55 pm. Over two hours.. I did the math and realized that it took 1 hour and 45 minutes to do the actual MRI, which was supposed to take approx an hour. Realizing that my MRI technician was watching me suffer, and giving me as many breaks between scans that I needed comforted me. Knowing she was concerned about me, and didn’t want me to have a panic attack (though that would be bad for her as well) was very comforting. Though I thought to myself that I NEVER wanted another MRI, and I am going to yell at my co-workers who implied I could sleep through it, I knew that if I ever needed anything like this again, I would want the smiling mother to take care of it for me. If I ever had to put myself back into one of those terrible modern day torture devices, I will absolutely come back to this location.
MRI: Modern Day Torture Device.
I am not even sure if I am going to be able to complete this post. I found out this morning that my very ill brother David is much worse off than anyone was letting on. He hasn’t been able to keep anything down for weeks, is extremely frail, covered in sores, his arms are legs are inflamed, and has been denied from every Dr in his area because he is jobless (He can’t work in that condition), and has no insurance. He applied for assistance from the state, but was also denied because he has not had a specialist diagnose him. He cannot get a proper diagnosis because he cannot get into a Dr. He cannot get into a Dr because he does not have insurance or a job. What. The. FUCK??? His wife is due with their second child, and was recently put on bed rest due to complications in her pregnancy. My older brother Eric, who lives right down the street from David, has been assisting in taking care of their 5 year old daughter, all the while helping support my ill sister Mary, and running his own company. Needless to say, when it comes to genetics, my family got the short end of the stick. Well, at least all of my dad’s kids.
I spoke with Mary earlier, and she updated me on what was going on. David is moving to Arizona TODAY, in fact has already left, and is driving a Uhaul 12 hours to get there. My sick brother. Who has sores all over his feet. A flare of what is obviously discoid lupus, as well as systematic lupus, and possibly rheumatoid arthritis as well; He is expected to drive his home packed in a giant box on wheels, his wife, and his 5 yr old daughter 12 hours to AZ without dying. Needless to say, we are all terrified. We are terrified he will pass out while driving. That his joint will lock up, and he will lose control of the vehicle. That he will have a severe flare, a seizure, or even die while in motion. I keep telling myself and Mary that when he makes it to AZ, he will have the help he needs and he will recover. He will stabilize. He has been running a fever of 102 for three days, but refused to go to the ER and get stabilized before attempting this drive. He said that they would just keep him for hours on end, then release him with little to no relief. He might as well take the drive so that he can rest when he gets there. It’s only 12 hours, right? I keep thinking about myself in that MRI machine last night, and how the pain of the vibrations caused a flare, multiple mini panic attacks, and my whole body to tense up. I can’t stop thinking of him having to control such a large vehicle, the shaking, the movement, and everything that comes long with it and fear for his safety. For their safety. I am in wrecks.
Yet here I sit at the front desk, answering phones and auditing accounts. What else can I do? Go home and cry? I can do that tonight. It would be a very expensive cry, and I can’t afford it. I simply need to keep it together and tell myself that my brother, my stubborn bullheaded brother, can do this. That he will make it, and that he will arrive safely. But then what? His body is shutting down. He has a green color to his skin according to Mary, and he can barely move. Well, on the bright side, he is not jaundiced, so at least his kidneys are working ok, right? But what causes that to happen? I did a search and I found a few things, but this sounded like the most applicable.
Hypochromic anemia, once commonly known as chlorosis, is one potential cause of green skin. This condition results in the red blood cells lacking the normal level of hemoglobin that normally gives them their red color. Consequently, people with hypochromic anemia sometimes exhibit a green pallor to their skin. Other symptoms of the condition can include shortness of breath, headaches, and a lack of appetite, while potential causes include B6 deficiency, low iron absorption, certain types of infections, or even lead poisoning.
I am terrified for him. I cannot imagine losing my brother. I have not seen him in months, as I live almost an hour away, and when I do go to visit my sister and brother, David has always been somewhere else, or too sick to see me. He has been very ill, and not getting any better for the last 3 months. When I spoke with Mary today, she emphasized multiple times that he looked like he was going to die just from standing up and walking. That his body is shutting down, and she is scared that even if he wasn’t driving a Uhaul he would end up passing in the next day or two. I am trying to stay focused, but I needed to get this off my chest and share. It always makes me feel better to share. SO.. Now I am going to get back to work, and try not to think about the “ifs”. I want to think about the “whens”. When he makes it to AZ. When he gets into a Dr. When he gets into a specialist. When he starts recovery. When I can see him again. WHEN his baby is born.
WHEN… not if.
It’s MRI day, and I am going in less than an hour. I have a date tonight as well, so my day is pretty full. I have to admit that I am a bit anxious, as I have been vomiting all day, and couldn’t even keep a banana down. I don’t want to end up puking on myself, a nurse, or the machine. It’s a bit nerve racking as well because I have never had an MRI. I know things will go fine, but I am just a bit… ugh.
I also made an appointment this morning to go get blood work on Friday to test for additional autoimmune diseases, focusing on Lupus. I am sure I will feel just as anxious then, and will post again. Wish me luck?
We all use it as a standard greeting, and it has become a polite way to interact with someone a bit further than a “Hello”. Generally people are going to answer with a, “Fine.” – “Good.” – “Great!” – “Not too bad!” – Always followed with a return of the question, and the same response from the other party. “How are you?” But when you have an autoimmune disease, chronic pain, and are continuously going through both painful and exhausting diagnostics, to answer that question with any of the above would be a total lie. I am not really one who likes to sugar coat things, or lie to people, however I have begun to feel like an asshole when people ask how I am, and I actually tell them. “My legs hurt pretty bad, I just spent 20 minutes in the men’s bathroom vomiting while the receptionist watched the door because the women’s bathroom is out of order, my head is killing me, and I can’t stop shaking. How about you?” Is that what they want to hear? Is that awkward and rude of me to answer honestly, or should I just respond with a standard ‘lie’?
Today I am obviously ill, and weak. I have been sick since last week off and on, and most everyone is aware of it. My butterfly rash is almost gone, and the remaining visuals of it have been covered with makeup today. But it is hard to miss me limping around, and I am almost positive that each woman who works in this office has walked in on me expelling the small amounts of food I was able to take in earlier. By the way, Skittles look and taste AWFUL coming up. Just learned that today. Not a pleasant thing to discover. Anyway, it is common knowledge in my office that I am often sick, though some people are very unaware of what it is I have, just think I am an over dramatic hypochondriac, and like to harass me from time to time about my missing work. I just sarcastically laugh, and walk away. What else can you do? Those are also the people I lie to when asked how I am doing. They aren’t worth the effort or interaction. Please keep walking, you douche.
So back to the issue of how society pushes off, and makes people with chronic illnesses feel awkward and discarded on a regular basis. “How are you?” – You don’t really want to know how I am, so why are you asking? I understand that it is polite to ask, but I am tired of giving polite answers. I am tired of looking run down, exhausted, and beat to hell, then have someone pleasantly ask me how I am. I can tell when someone is genuinely asking me how I am because they care. Those are the people, who with their friendly faces and caring eyes, make me feel like it is ok to come to work, even when I look and feel like death. Those are the people who make me feel as though I am not inconveniencing anyone with my illness. I hate the glares, the looks, and the whispers I get from a small handful of people I work with, and I almost feel guilty for making my way through the office for the 50th time that day, no shoes on, mismatched socks, random bits of child goo on my clothing, and likely very little make up on with messy hair.. off to the bathroom just in case the apple I ate decides it wants to jump ship. “How are you?” Why are you asking me that? You don’t care. You have no concern, and if I answered you honestly, you would whisper off in the distance about my dramatic, and pitiful ways.
As much as society in general would like to deny, this is very common in other parts of life. I have gained 50 lbs this year alone simply because I am too tired, exhausted, etc to workout, or even move much. I have to eat foods high in salt, as my body has a sodium deviancy, and I slowly limp around most days. There are many times I have difficulties getting out of my little Saturn, as it is low to the ground, and my body hurts from the manual operation it requires. I have seen people stare more than a few times, and glare at me in disgust as I try to heave my over weight (full figured?) body out of my vehicle. It is very apparent that they assume my health issues stem from eating non stop hamburgers, ice cream, pie, cake, and GOD knows what else! They see me as someone with little self control, and even NO self respect! They have no idea that my intestines are swollen inside, I can’t even have anything of the sort because I can’t process gluten, and I have barely been able to keep food down for almost a week. I can’t stand the judgement that is passed on me so quick, and the looks on their faces. I know I should just let it roll off my shoulders, and keep my head held high, but lately it just makes me so angry!
The last week or so, when I get these looks from the skinny little women at the grocery store, I just want to shake them and say, “I AM FUCKING SICK! STOP JUDGING ME!” – However, the idea of incarceration isn’t exactly inviting. I wish I could walk around with a sign on me that says, “My medications cause weight gain, and we are going through diagnostics to see how much damage has been done to my knees from my degenerative auto immune disease. Have a nice day!” I know that most times I don’t want the general public to know I am ill, and I much prefer an invisible illness most times. However right now, with the rash on my face and chest, the limp, the look of disgust, black eyes, and my overall look of complete chaos, I feel like I am not to blame, and I don’t deserve to be treated as if I am failing. I am not failing! I am doing a DAMN good job! If I were to suddenly be as healthy as the average person. If tomorrow all of my illnesses were just MAGICALLY cured, I would feel like Wonder Woman on STEROIDS! I would be unstoppable! I would accomplish so MUCH! Take on the world, and do it with a beaming smile on my face!!! How are you? Pffft… My health may be in the pots, and my body is not capable of everything yours is, but I am still fucking awesome! ME! As a person.. inside. I AM AWESOME! But my body.. is not. Which answer do you prefer?
I am just fan-fucking-tastic, and as bright as a damned sunflower! Sunshine and rainbows everywhere! How are you?
I’m not broken, I’m just bent… and I can learn to love again.
This morning I woke up late, flushed and frustrated from last night, but determined to get to work on time. I rolled out of bed, and as soon as my feet hit the ground, my heels screamed in agony, and all the muscles in both calves seized up. Awesome. Gotta love RA pain. As I wandered around getting clothes for my little girls, and myself, I realized that my face was slightly burning. I figured it was from the tears I shed last night, and it was no big deal. My makeup was smeared under my eyes, and my head hurt. I have discovered that if I get my girls dressed first, assisting in the process, then allow them to watch cartoons while I get ready, it is a much easier morning with little to no fighting.
Once my girls were dressed, I headed upstairs to get myself ready. I washed my face, which for some reason hurt, and looked in the mirror. What the hell? Both cheeks were flushed across face, under my eyes, and up my cheek bones. The skin was raised slightly, and tender to the touch. I stood there looking in the mirror wondering what the hell was going on, when it dawned on me. This was a butterfly rash. A malar rash. Often symptomatic and related to lupus. My sister gets them every now and then, and has a hard time covering it with makeup, as it tends to burn and hurt. I turned away while I brushed my teeth, figuring I was over reacting, and it was just from the cold water. I brushed my hair, and started to run the straightener through it. My hands quivered, and ached, as well as the shooting pain through my feet. I looked over my black eye from getting bashed in the head by my baby this weekend, and the lovely broken cartilage inside. Black eye, malar rash, and an RA flare up. Good morning auto immune disease!! How have you been!?
Being in a tank top, I looked over my chest. I have been in denial that this could possibly be a form of lupus as well, but standing there looking over myself, and feeling the aches inside me, it began to sink it. This could be lupus. “It’s never lupus! – It could be lupus. I don’t want it to be lupus. Maybe it is lupus.” These are the thoughts that ran through my head as I finished up my prep, and headed downstairs. Even if it is lupus, the medication they would begin with is the same meds I am on now. If anything, they might just up the dose to offset the additional symptoms I am having, and decrease that chances of break outs or additional damage. I have been having intestinal pain, bleeding, and discomfort in general. I know that this can be a sign of lupus, but obviously can mean so many other things, and even be accounted for by my celiac, or possibly even my RA.
I have been having issues this morning dealing with the thoughts running through my head. I made the mistake of looking up malar rashes, and confirming that both of the rashes I have look almost exactly the same as all the posts I found. I simply don’t have blisters or scabs on my face yet. Hopefully I don’t get there. I text Mary and told her how scared I am. She of all people know what I am feeling, as she had to deal with lupus at 16. I remember the pain, the confusion, the anger, and the hardships she went through. She understands me better than anyone right now. She text back that she would snuggle me if she were here and let me cry. This alone started tears in my eyes, and I had to take a walk outside. I limped my way out of the office, pain shooting through my legs as I did. Just as I stepped outside, my phone rang. “MARY” – Oh thank god! We spent the next 20 minutes talking about random things, lupus, pain, some dude walking down the street doing weird handstands I saw. We made plans to get together this weekend and have some quality time. I really need some love right now, and she can give me the very best kind. I am very loved, and lucky, to have such a great family. I have been struggling financially, as I have been sick and my child support stopped coming through. Two of my sisters, my mom, and my grandma all pitched in yesterday to make sure I had food, power, and gas in my car. It was amazing, and the love I felt yesterday is what got me through last night without having a total break down. The pressure is overwhelming.
I feel a bit better, and feel prepared after my conversation with Mary, and venting on this blog, to now go and do my training for the sales team. I am prepared to take on the day, and keep my head held high. I can do this because I know my bed is at home waiting for me. Waiting for my weak body, and my tears I am ready to shed.
Just get through the day.