Always Ain't Forever

I am compelled to blog. So much has been going on with me and I am HIGH anxiety right now. Everything bothers, frustrates, angers or appalls me. I need something, not sure what but I need something. I am thinking I need to get away but not sure that its a change of scenary . . . if my issues are internal the change of scenary means nothing . . . but if its just the stress of all that is happening or that I'm going through then the change may do me good. I need to rest . . . but its difficult because I don't like to sit around and do nothing. But it is obvious that I would benefit from a vacation or the opportunity to not feel the stresses of this disease. So since last I blogged I have suffered a fever of over 100 for over 1 week . . . apartenty by infections hide and they could be caused by anything and be anywhere. The lack of an active or agressive immune system is devastating me. Now that the fever is gone, I feel like crap and am in intense pain. The pain that was in my lower back now begins in my lower back and the spreads up into my back and goes onver my left shoulder blade and travels down my left arm and stops around my elbow. Just way too much fun for one person. My rheumatologist is wonderful. . . she doesn't mind my almost daily calls and does all she can to help me. Soon I will be having my back scanned. Hoping that will tell them why its happening. And my spine just hurts . . . I am dealing with so much and although I know its temporary it is taking its toll on my mental and emotional being. I am some sort of roller coaster . . . I cherish the good days and lament over the bad ones. I spend too much time alone . . . for some reason people think that I am always busy but that is not the case . . . I am alone more often than not. Physical therapy has been good to me. There has been signifcant improvement in muscle range and strength, which is part of the reason my back is such a mystery. Unfortunately, I am not able to continue physical therapy right now because I need to rest as much as I can and the pain is, simply put, severe. I can no longer walk more than 15 feet without the pain taking over. I have the best co-workers because they are always willing to help and they look out for me . . . even my boss is kind enough to find out if I need lunch and will go get it for me. I can't deny the blessing of friends and family. I often think that I need to stop whining or even talking about the disease but right now it is all consuming. I am in constant pain . . . its as hard to explain as it is to live with . . . today a friend touched me and it shot pain throughout my entire body. I had to tell her not to touch me and I'm afraid I hurt her feelings. It's hard to explain that the pain never truly goes away . . . I want so much to blog that life is grand and the pain is rare. I want to blog that both diseases are in remission. I want to blog that I am in a good place mentally and emotionally. I want to talk less about my disease and not feel compelled to tell everyone. I've gotten better at telling people the truth about how I feel but now feel guilty that I'm burdening people with my issues. If I've never said it, Rhupus is not your friend. But I am grateful to God for the friends that surround me and pray for me. I am blessed with a circle of support. And I know I'm going to get through this . . . not sure how long it will take or what will happen in the process but I know it won't always be this way . . . As my grandpop would say, Always aint forever.

State of Confusion

Oh, Rhupus, how you do torture me with your promises of remission and then sudden flare ups that erupt so violently throughout my body. So, I was feeling pretty good but then all of a sudden I started getting this pain in my back. I can't stand for more than 5 minutes or walk more than 15 feet without the muscles in my lower back coming together in a knot an twisting around the area where my kidneys are and it cripples me. I can't stand up straight. I fold and breath heavily and pray that I find a seat and soon. Most interestingly about this is that the rest of my body feels great ! Its nice not having a lot of pain even if I know that walking or standing can cause some pain. My spine is still causing me some pain but I am not living in the same world of pain. But then here comes my systems . . . all of a sudden I have a fever, the doctor thinks I've had it on-and-off for a while but since most people don't take their temperature everyday I didn't realize it. I've had a fever of around 100.4 for 2 days now . . . but I've felt hot like this for over 2 weeks, even sleeping with the window up. I went from bieng the personwho is always cold to bieng the person who sweats. And I never sweat ! Even back in the day when I was young and ran track, I rare broke into a sweat, it was always one of those things. But now I can sit in one place and just start sweating. I get blood work done every 2 weeks and consistently my white blood cell count is getting higher. So they are looking for infection, although they can't find any at this time. And the fever doesn't seem to wanna break so its just remaining vigilant and getting rest. The upside is that I get all the whole fruit bars I want ! For some reason, I have been having something like acid reflux but much more violent and a lot more like vomiting. The interesting thing is that I've cleaned up my eating . . . I get in at least 6 servings of fruits and veggies everyday and rarely eat fried foods and have cut down on my red meat consumption . . . so it may not be the diet . . . its just sort of waiting and seeing. My rheumatologist is perfecting my complicated cocktail . . . part of that is weaning me from steriods. I can't wait to get rid of the steriods. The doctor thinks they are doing more harm than good. And I really can't take this weight gain or the big ole Barry Bonds head and face thing. Hoping it won't take long for my head and face to go back to normal and that the weaning isn't too much. Sometimes being weaned from steriods can be difficult and there are lots of side effects. But I'll take the side effects of weaning over the side effects of having steroids in my body. On and off throughout this disease I've had crazy violent muscle spasms in my calf . . . and as is par for the course, it has gotten stranger . . . the muscles spasms now start in the front of my leg and are similar to a shinsplint but much more painful because it goes from the foot up the font of the leg almost to the knee . . . never thought much about those muscles until they started waking me up every morning. Of course they don't just exist on their own, the muscles in my calves have to join in so it is charlie horse-a-pa-looza ! and this usually happens for at least 15 minutes but as long as 45 minutes. Oh, wait, I should say, that its in both legs simultaneously. I am enjoying physical therapy. And it seems to be helping. I have been prescribed 6 more weeks which will be 12 weeks of physical therapy and hopefully that will be key to my ability to walk and move consistently. I am also going into the pool on Monday ! It will be wonderful . . . I haven't been in a pool in like 15 years but I'm excited because I am getting healthy - I have to . . . I can't, don't want to and refuse to live like this - trapped by a disease. I told my rheumatologist that I think of my body as a violent place where nothing good happens and that I can't control. She was comforting and is working with me to create the perfect cocktail that will hopefully control all of this . . . Oveall, I feel like I'm positive and in good spirits although sometimes I get down and the pain wears on my psyche. I am definitely in a Season of Healing because I am going through processes of healing and diminished pain whereas before I started treatment it was ongoing pain and misery. I feel confusion because on so many levels I am doing better but on other levels things seem to be getting worse . . . but every morning I wake up, pray, remind myself that it is a process and I'm in the midst of the Season of Healing . . . FORWARD MOTION !

The Heart Can't Take It . . .

This morning I feel compelled to blog . . . I am in a rare amount of pain and have been all week. I'm hoping that getting it out - just putting it out there will help me because holding it in and pretending that I'm o.k. is not working right now. I have recovered well from my surgery. I have been diagnosed with malnutrition because my digestive tract isn't absorbing well yet (when I was in the hospital I became dehydrated and didn't eat for 3 days). I am doing well with that . . . I have just gone back to my grandmother's way of thinking 2 vegetables with lunch and dinner (dinner and supper). I have also been eating applesauce cups throughout the day and I eat a banana every day. Just grabbing fruit whenever and wherever I can. I do not like chicken and am pretty sure if I eat another piece of naked chicken I might loose my mind but the benefit of malnutrition is you get to eat red meat and I am a fan of steak. None the less, I feel physically strong. Slowly pain has creeped back in my life in a strange way. I was doing pretty well I thought. Its funny though as I re-read past blogs I notice that pain comes more often than I remember or acknowledge even withng myself day to day. In November when I started seeing my rheumatologist the pain was horrible. As the meds kicked in it was amazing, I could walk through the grocery store and didn't need the scooter. I was walking short distances and standing for short periods of time with no pain. As the chemo started working on my digestive tract I realize that I was feeling just sort of sick and tired a lot. So, its been a roller coaster of different pain/illness. I went from being in massive pain all over my body to feeling just sort of tired. Well, now the pain is back and I don't remember if this is how I felt in November I just know this is not how I want to feel. After surgery, there is no more chemo and the daily cocktail of pills I take has changed. I am thinking that it takes a while for the meds to build up in my system but that process is so difficult. And as the pain remains and limits what I do it is playing on my psyche, attitude and demeanor. About a week ago the pain started in my back. If I get up and start walking beginning in my lower back the muscles start to contort and it feels like they are drawing up and sort of making a knot around my kidney area. While this is happening the muscles in my upper back start to spasm. And it went from me being able to walk about 25 yards to not being able to walk 1 yard without pain. I had to stop 3 times yesterday walking from Soldier's Grove to the State Museum. And although the pain was excruciating it felt humiliating and really hurt my feelings. Why can't I move. And the fact that I am now in physical therapy, which I truly enjoy, makes it a little more puzzling. I am having pain in my left shoulder so I can't raise my arm and my head is heavy. I literally can't hold my own head sometimes because my neck just doesn't seem to work. I think part of all the turmoil is that a lot of people think that I stop walking or use the cart because I'm overweight and yes, people do say things, point and just plain can't whisper. And although my weight is an issue, 3 of the 7 medicines I take cause and/or retain weight. So no matter what I eat or what I do I won't be loosing weight unless my disease takes a very drastic and devastating turn. Funny, I didn't start really gaining weight until I went back to college, which happened to be in my 30's when my metabolism slowed down and my body started to shift. Oh, if I understood then what I understand now . . . but that is water under the bridge. In the last 2 years since coming home from Cooperstown I've tried so many different ways to eat better and healthier. I didn't want to do a diet, I wanted to acquire life changing eating habits. Because it is so important that whatever I do I can sustain but all I did was gain weight. I now know that I was sick and my body wasn't functioning correctly. But you know what knowing that doesn't keep me from being upset that I haven't been able to loose weight no matter how much I tried. I don't make excuses for being overweight because I haven't been average weight since my 20's and I do love food. But this whole blow up like a blimp with Barry Bond's head (from the steroids)is really taking a toll. And then for people to say cruel things, it just gets to be too much. And I have found myself not taking the scooter when I should because I don't want people to say mean things to me. I am very sensitive, my grandmother used to say "You're tender-hearted." When people say things to me, nice or not-so-nice, I take it to heart. So, there I am in so much pain I can't stand up straight and feeling too humiliated to stop and sit or use a scooter. I think it just messes with my head too much. I feel like there is definitely a mental aspect to my illness. I mean honestly having a disease that has less Google listings than you have is crazy. Seriously, I have more listed under Google than my disease shows. That sort of scares me . . . but that is how little is known and has been researched. I would be the one with the rare disease. Knowing you have something other people have never heard of or don't understand is difficult. And when so little research has been done tht you are constantly looking for answers too, means just a lot of frustration. I want to always have a good attitude and feel like I can get through all of this but its is difficult. I get excited that my organs are functioning well . . . I expect a great report when I go back to the doctor in a week but I need to know what is going on with my muscles. I've never felt pain like the pain in my back. I guess I'm looking for consideration, consolation, comfort and confirmation. I've gotta get better and soon because although my body seems to be able to take it, my heart just can't.

Sick and Tired of Being Sick and Tired . . .

So much has happened since last I typed. On a positive note, my nephew turned 1 year old. He is so incredibly beautiful . . . that little face and he is so vibrant. I am grateful I was able to spend time with him - he did a lot for me with his little magical kisses. I often find myself searching out these small things in life that make me happy. Looking for the things that are not material or tangible . . . I look for God's mercies in everyday life. And they are not that difficult to find but they can be difficult to focus on in the wake of a violent body that is filled with pain and turmoil. I wake up everyday and think how fortunate I am because, well to be honest, I am alive. After that little bit of happy it can become difficult because sometimes I wake up almost paralyzed. The pain of moving is sometimes more than I can comprehend. I wake up scared to move. I wake up afraid that I won't be able to move. Waking up is exciting and tragic all at once. Oh, I should catch you up. I didn't read my last entry so I don't remember when I did it or where I left you but I will try to pick up. The chemo was devastating my digestive tract so I ended up having emergency surgery. The doctor stopped chemo at the end of January and we were developing a "plan" but then I had an episode at work . . . and 2 hours later I was getting up off the floor and realizing that things are bad. I went to the doctor and he decided that surgery needed to be done immediately, within a day I was in surgery. And the surgery was extremely successful. It alleviated a lot of pain and distress from my body. Harrisburg Hospital's ER was horrible. I had to be taken back to Harrisburg Hospital twice in 2 days . . . I entered the hosptial for surgery on Friday and was home for less than 10 hours in the next 3 days. I had 5 IV-sites and was given a crazy drug called dilaudid. I probably should have never been allowed to go home. And the things I suffered were beyond humilating. I am on the other side of the incident but I am no less traumatized by the gross incompetence and failure to treat me wholly. Two weeks later, I am grateful to my surgeon. Because the chemo has ended and my rheumatologist gave me a whole new cocktail of drugs my body is racked with pain. And I do mean pain. I think of my body as a violent place where muscles contort or contrict or spasm or don't work. The pain has become extreme and its hard to wait for the new cocktail to build up in my system. I have stopped telling everyone I'm o.k. when I'm not and it feels horrible. I just want to say I'm fine and go on with things. I don't want to not be o.k. and I don't want other people to know I'm not o.k. I realized the other day that my already fat face is now enormous because I have what I call "medicine face." When people who are sick and take medicines that make them gain weight or are on steriods so they puff up even more . . . yeah I have that . . . I am afraid I'm going to have a head like Barry Bonds. Remember when he first started in baseball and his head was a normal size but his actual head got bigger - my head and face are getting bigger. I can really see it and it is disturbing. Everyone says that I look fine but I have this second face growing where my chin used to be and around my eyes - huge and swollen and its creeping me out. I often feel bad because I know that it could be worse and that there are people who can't walk or who are paralyzed. I don't want to be ungrateful for my many blessings. I also don't want to be whiny. But the reality is, it is difficult to ignore the pain and its difficult to put on the happy face every day. Some days I'm not even sure how much longer I can live like this . . . how much longer can I do this . . . the answer is as long as I need to . . . I hope. So, where do I go from here . . . I am being re-assessed now and the rheumatologist is determining whether this cocktail is working. Assuming it is I will continue on it until my body goes into remission . . . assuming it will eventually. I have started physical therapy 3 times a week for the next 6 weeks, then it's into the pool. My left kidney has been giving me fits and is extremely painful right now . . . my liver and right kidney seem to be doing well. My chest was hurting because of pericarditis but its slowly getting better. My ankles are huge and my leg muscles are tender. And please do not try to touch me . . . my skin hurts so bad . . . it hard. I mean it is difficult these days. I realize that it could be worse and for some people it is . . . so I count my blessing and look for God's mercies because to be perfectly honest, I'm sick and tired of being sick and tired.

Take 2 Steps Forward . . . 1 Step Back !

So, my intention with doing this blog was to get out all the confusing feelings and thoughts I was experienceing as well as providing my friends and family with details about my condition. To be honest one of the most taxing parts of being sick is having to repeat the details over and over again and heaven forbid you forget a detail, then people think you are hiding something or far worse, you didn't want them to know because they weren't as important. But what has happened is that my life has been so upsetting, depressing, busy and stressful that I just haven't been blogging. I just haven't had the desire to think about my life much less write about it. I'm not necessarily in a much better place but I am at a point where I think I need to put out some info and well, its been almost 2 months. My short and sweet status posts aren't enough info. I'm going to try to catch up now . . . if I can remember it all : ) I had Breakfast with Santa with my nieces and nephews. I really didn't have much money to buy Christmas presents but my nieces and nephews reminded me that they truly love me for me. I felt so special having breakfast with my 2 brothers, sister-in-law, Dad, BFF & Husband, my housemate and the kids. Breakfast was amazing! My sister-in-law, BFF & I were in the kitchen all cooking at the same time and there was no bumping into each other, making a mess or arguing. It was seemless. I credit my sister-in-law because she is walking peace - she brings a calm and sense of order to things. I just absolutely adore her. We ate and ate . . . I made my famous eggless french toast and a laundry list of breakfast goodies but the best part was the laughter and obvious love ! And my nieces and nephews like each other and like being around each other . . . it was family on steriods. My mom had to work in the morning so in the evening we had pizza and wings at her house ! More happy ! Family is good. I went to Alabama for Christmas. It was my first vacation from work in 11 years and my second time going home in 2 years. Last time was for a few days this time was an entire week ! And I loved every moment ! I met new family members that found us throught an unusual link and they were amazing ... looking forward to seeing them in May. Everywhere I went there was a fully cooked meal and someone happy to see you. I truly needed it and the weather was amazing. While there I went to the property my grandfather farmed - the place my mother picked cotton - the place my ancestors toiled - and it was an experience I'll never forget and feel so privileged my family worked so hard for me, my generations and all the Joneses that come after us. We are in a better place because of their sacrifices. I also spent the day in Montgomery with a professor from grad school . . . she showed me Confederate and Civil Rights Montgomery and I can't wait to go back . . . On Dec. 30th my mother had her Thyroid removed. I stayed in the hosptial room with her til they released her on Jan.1st. On Thursday, Jan 5th I took her for a follow-up appointment and discovered she had an infection in the incision area . . . they drained it with a needle in front of me and it was horrible. I couldn't imagine anything worse. On Jan 6th I thought that something was wrong but couldn't convince her to go to the ER. On Jan 9th, we went for a follow up appointment and the surgeon realized that my mom was allergic to some of the material used in surgery and he performed emergency surgery on my mom, in his office, in front of me. I pray to never have to see anything like that or have any experience like that as long as I live. I don't wish that on any human. No human should ever see a loved on operated on. Needless to say I moved in with my mom and didn't leave til Feb 1st or so. I still go daily to check her scar and put cocoa butter on her neck. My mom is allergic to adhesive so the tape over her neck devastated her skin. My mom is rebounding .. .she looks good and is really strong. I am glad she is o.k. It was a scary experience. No one wants to see their mother suffering or in pain. Well while I was taking care of my mom, I didn't take care of myself. So, you read all of that just to get to this . . . the health update. Rhupus is a syndrome. It devastates your body and it is unpredictable. It is painful. You don't know when or how it will attack you and the only way you know which disease is most aggressive is that one is clearly skeletal and one is clearly muscular. The fact that they attack you simultaneously means it hurts to walk or to sit, to lay on your side or your back . . . rhupus is a disease that you don't get used to or understand so you are helpless and clueless. I was doing well, but when I started taking care of my mother I did myself some harm. I pulled a few muscles and caused some stress on my organs because I didn't take my medicine on time for over a month. I was able to get things back under control but then I started feeling terrible. I didn't know what was wrong . . . it was a lot of pain. It turns out that all these months of chemo, that seem to have done nothing to me, was destroying my insides. My digestive system and my bowles are inflammed and damaged . . . this process has been pain I didn't know could happen. My liver was hurting. It was crazy. I was able to see a specialist who helped pinpoint the triggers and together with my rheumatologist removed some of my meds, modified others and took the chemo. Now, that helped but then the pain came back . . . a lot of intense pain from head to toe - flooded my body. My inflammation was so bad that I put ice on my joints - that's right, the woman with arthritis put ice on her joints. The ice felt good and didn't harm me because my body is in that much turmoil. I hurt so bad on Thursday that I left work and headed for the ER at Hershey Medical Center. I called my rheumatologist and let her know I was going in - she called me in the car and divered me back to her office. She moved her schedule around to make sure she could see me. She is concerned to say the least because all my levels are up . . . which levels? you might ask, to honest I don't know, why don't I know ? because it's like alphabet soup and I get confused. So instead of looking at the letters I focus on what the test tell the doctor. Like the one that says my body is inflamed. And my white blood cell count is up . . . but my blood pressure is down and my kidneys and liver look good. But my spine is painful to the touch, my shoulders are so bad I can't lift my head above to comb my hair and my knee is crunchy, my ankles are huge and black . . . its a rollercoaster. The doctor thinks my organs will heal but now my rhupus is going crazy. Its interesting how that happens. A month ago I just wanted my organs stable enough that I could live and not have to go live at Johns Hopkins, now I just want to be able to walk to the bathroom without crying. So, when I went on Thursday the doctor reevaluated my meds . . . I have a complex medicine regimine - so she decided, NO MORE CHEMO - its just too devastating and she doesn't want further damage. I have a new arthritis medicine, she halfed my lupus medicine, quadrupeled my steroid, added a calcium supplement, added a muscle relaxant, gave me a pain reliever, and added another med (which escapes me right now). So now I take 14 pills a day but am in a lot less pain. I have to report to my doctor on Monday morning and we'll go forward. I am relieved that there is no more chemo. I am dredding putting food in my mouth because it has to go through my digestive system. I am excited that my kidneys and liver are approaching normal size and function. And I'm excited that if I stay on target Johns Hopkins will just be for testing, evaluation and treatment recommendation. I am grateful that my doctor is so responsive and attentive. I am tried. I am sick and tired of being sick and tired. I am weak. I am exhausted. I am in pain. I am in a Season of Healing. I am in the process of becoming healthy. I am going to be o.k. It won't always be this way . . . trouble don't last always. I'm in forward motion. I am taking 2 steps forward and even if I have to take 1 step back I will keep moving . . . moving forward.