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.