Blessed in the Midst of Adversity

I can't believe that its been a year since I blogged. When I started blogging it was my intention to blog once a month . . . to put out all of my feelings and thoughts to keep my friends and family up on what was going on. Obviously that didn't happen. So what has caused me to finally blog again . . . I'm not quite sure. Part of it is because people have been asking me whats been going on and what's new with me. And well of course to some degree it has to be theraputic. My diseases . . . hmmm well, there are diseases and there are ailments and issues. It's just one big furious rollercoaster. Rhupus Syndrome (Rheumatoid Arthritis and Lupus) Sjogren's Syndrome Blood Clot in left leg (over 1 foot long) A growth in my neck between the thyroid and voice box . . . which means sometimes I sound like a dude and sometimes I can't talk Spinal & Thoracic Epidural Lipomatosis (caused by Lupus and accelerated by steroids) One thing that I've never discussed is that the doctors have been concerned about my brain function. For over 6 months I've been dealing with oxygen deprevation to my eyes and brain. It was more than frightening to think that I could lose my intellect and brain function. I play a lot of Words with Friends and Ruzzle because they make me use my eyes and my brain simultaneously. There has been no explanation . . . but believe it or not, the spinal issue may be the cause. Its amazing how the human body is connected and functions. As a result I will be on blood thinners the rest of my life. The doctor indicated that I am now prone to clots and it's too dangerous not to be on thinners. And the spinal issue is crazy scary . . . the report listed the words "calcification" and "complete obliteration." I am probably going to need surgery but you know what I've been in such pain for so long that I am o.k. with that because it can only help me at this point. As of March 1st I'm unemployed. And that is probably the scariest thing that is happening right now. No income is just beyond what I'm able to handle right now . . . at least it feels that way. Fortunately, I qualify for unemployment and it takes 3 weeks but eventually that will come. That means I won't lose my home. I'll be a little late but I won't lose my home and that's all that matters. Its just strange not having a job. Although it is a HUGE blessing because I was struggling everyday to get up, get dressed and go to work. I spent the day in so much pain that often I would be weeping at my desk. And to be honest, not having a job for a few months is probably the very best thing for me because I will be able to rest, heal and rehab. If I have surgery for my back it will be about 10 weeks in a rehab facility. If I was working everyday I would not have any income while I was rehabing but with unemployment I can rehab and actually still look for a job. I've been looking for work-from-home jobs because honestly there is no way I can stay in the house and not work for months at a time . . . that is just not going to happen. Hershey Medical has a fund to help people like me, who lost their health insurance and are unemployed to help pay for outstanding medical bills. They also have incredible social workers who have spent so much time explaining things to me and helping me fill out form after form. Of course this process takes about 21 days. It feels like everything takes a few weeks. And it takes so long to recover from even a few weeks of being behind on bills. But I do honestly see all the good . . . i can't explain the amount of pain I am in every day from my spinal issue. I can't stand for more than a few minutes and can't walk further than 10 or 15 yards. I don't usually express my pain . . . and when I'm at the hospital the doctors are never quite sure how much pain I'm in. I don't usually express the pain I'm in . . . but the truth is I'm always in pain - always. The degree of pain is always different but there is always some . . . I'm not good at asking for help. And by help I mean anything . . . but that time is so over. I'm going to have to ask and accept it as it comes. Its hard to admit that there are things you just can't do for yourself. I don't like it when people see me in wheelchairs or even the scooter at Giant. It is me admitting that I am helpless . . . but I am learing to be o.k. with it basically because the alternative is to be in the kind of pain that even percocet can't help. Today, I ran into a friend going into a store, my niece had run into the store for her sister, and it made me so sad. She just drove right up to the store, got out of her car, walked in, got what she wanted and walked out. She just walked - she didn't hobble and wasn't in pain and didn't need anyone to go in for her. I get so emotional when I see people walking or moving . . . I pray that one day I will be that way again - but most days it seems like an impossibility. And I am exceptionally private. I know you think I'm not . . . especially since I blog but remember for every 1 thing that someone tells you, there are 10 things you will never know. People tell you what they want you to know and are extremely good at not telling you what they don't want you to know . . . but I'm going to have to drop that and allow people into my house and into my life. I must stop being so private that not even my closest friends know everything. And its so hard to even think about . . . A while ago a friend who does web pages suggested that I get a web page together so people could donate and help me when I needed it. I said "No" because I couldn't imagine I'd ever be in a situation where I needed help but it is now obvious to me that I never know what new illness will pop up or when I will need help. So that page will be coming up soon. So, I'm going to reach out to friends to help with cleaning and laundry. I've somehow managed to bruise my back muscles and so its difficult to do anything for myself right now. And whereas I've never been the neatest person . . . I have cleaning issues. So don't be surprised by the call to come help . . . or the ask to add you to the list for a few hours here or there. So, yeah, I'm pretty sure that I still have things to say but you know what, my leg is swelling and starting to throb and my back is killing me so I'm going to go take some tramadol and call it a night. Tomorrow it could be so much better. Tomorrow will be somehow better.

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.

Rhupus . . . not as much fun as it sounds

I haven't blogged in some time . . . there is no real reason I haven't blogged. Many days I have said that I need to but haven't had the time or energy. It's been over a month since I blogged and so much happened in that month that I'm not even sure where to start. I have a new specialist and she is PHENOMENAL! I completely trust her and her expertise. She told me I have been misdiagonsised basically because my family doctor just didn't diagnose me, even though a simple batter of test would have told him what was wrong with me, and because my previous rheumatologist just didn't have enough expertise to understand what was happening with my body. I have completely left Pinnacle Health Systems and moved to Hershey Medical Center. The difference is staggering. My family doctor has never truly believed that there was anything wrong with me beyond my weight. I tried to explain that I gave up all dairy products and all soda for over 6 months and gained weight - that I can hardly walk down the steps much less do exercise. And he was convinced I had diabetes, he also was convinced I'd die of a stroke because I'm black, a woman and overweight. Well, it turns out that I don't need blood pressure medicine because now that I am being properly treated and cared for, it has turned out that my blood pressure was that high because of the stress I was under and the pain my body endured everyday. Amazing! And it turns out that my body not dropping weight when I dropped all dairy out of diet was an indicator that my organs were not functioning correctly. So what exactly do I have ? Well, I have to say that I apologize if you've been reading my blog or following me on FB and I haven't been clear. I won't recap in detail but I'll try to make it clear. A spot was found on left kidney. I began seeing an oncologist(I will not say that word, and I think some people were looking for or waiting for me to say that word but I refuse to even consider that it was or could still be in my body). Part of that treatment was chemo. In October, my body functions seem to start breaking down - so they wanted to stop the chemo and allow my immune system to try to work. Before they stopped the chemo they ran a set of test and found that the spot was gone - not even a shadow or mark. The oncologist was happy but has informed me not to go crazy. He believes in miracles but it could return so we should be ever vigilant. In the meantime, I was still in so much pain and I couldn't walk to bathroom from my bedroom without crying. My family doctor was not responding but I got an appointment and saw the physician's assitant. She saved my life because she realized that something was extremely wrong and called personally to Hershey Medical Center and got me into their Rheumatology dept as an emergency. I went through a batter of test and went in to see the doctor who identified my condition as Rhupus. I have rheumatorid arthritis and lupus at the same time - it is sometimes called Rhupus Syndrome. Apparently, it is rare although they are discovering more people who have this condition in this way. I also experience Raynaud's - chiefly it means I get cold but not chilly cold, cold to my bones where it hurts and I cry from just being cold. The cold cause me so much pain that I can't move. But there are ways to cope with the Raynaud's - basically don't let yourself get cold :) But this Rhupus thing - it is a mindblower. O.k. so if I never explained clearly before, hopefully you understand now all my conditions. So during November I began an aggressive regimine of medicines to treat a very aggressive disease that was basically causing my organs to shut down. ALL OF MY MAJOR ORGANS, EXCEPT MY HEART, ARE INFLAMED. And it hurts . . . a lot. My lungs have slight inflammation but no worse than my basic asthma in winter. My liver causes some pain and concern. My intestines aren't really fond of the rhupus and like to tell me . . . EVERYDAY! My left kidney is almost double it's normal size and my right kidney has a cyst on it. My kidneys are drawing the most concern. I have a procedure on my bladder in November but it seems to be just fine. Everyday is different and some days are great but I am definitely learning to live within my limitations not to them . . . going to them is to end up in extreme pain. I stopped my steriod earlier than I should have because I wasn't clear about when to stop . . . that almost cost me my life. I have definitely learned the severity of my condition. I have to be aware that if for some reason my organs don't respond to the daily cocktail and Friday chemo by February, I will have to go to Johns Hopkins to be admitted. Oh, yeah, chemo was resumed 3 weeks ago . . . often chemo is used to treat extreme cases of lupus (didn't know that before). For the record chemo is a frenemy . . . it helps greatly as a friend would but it is cruel and unyielding like an enemy. I am in many ways relieved that I finally have a correct diagnosis and treatment by an expert who calls me herself once a week to check in on my condition, sends me for tests every two weeks and sees me as often I feel necessary to try to ensure that I live and live with a higher than expected quality of life. So many times in the last few months I thought that I had the right doctors and the right diagnosis and the right treatment. In some instances I did but now with a specialist I feel like I am in a much better place. And since switching to this doctor I have been able to walk more and farther. I am in much less pain and not in pain 24 hours a day. But wait . . . there's more. I finally met my nephew Jones and he is so incredibly beautiful and happy and full of the lovin'. His mom taught him how to eskimo-kiss and she calls them doodles so when you ask him for a doodle he holds your face and gives the eskimo-kiss - so gosh darn cute. The first time I held him I just cried. He is magnificent. He's 10 months old and just a manifestation of God. A man I know, who was previously in a long term relationship with a family member, murdered his wife this week. I would have never thought him capable of harming a woman - much less kill a woman. It has thrown so many of us for a loop. So a lot of prayers for everyone involved. And boy does this sort of thing make you re-assess your life and the people in it. But then I recently found out that a female family member is extremely ill and has to have lifesaving surgery. I love this family member with every fiber of my being and am devastated at the news - devastated. A lot of prayer for her and her health. But then I am getting to go to Alabama for Christmas. I get to go to the place I was born and see my family members including my paternal grandmother who is 89. And I am making a pilgrimage to the plantation where my maternal grandmother's grandmother was born. I have not had a vacation since 1999 so I am so due ! Oh but I forgot about Breakfast With Santa ! I was Santa ! My nieces and nephews, dad, brothers and best friend came to breakfast and we had an amazing time. We had french toast, pancakes, grits, eggs, bacon, 3 kinds of sausage, toast and creamed chipped dried beef. We had some majorly happy bellies. I gave a few gifts to my nieces and nephews - and they were estatic. I didn't give anything big or expensive and they didn't care - they just wanted to be together and have fun. They brought me to tears . . . so blessed to have a family like mine. So close to me and caring so deeply for me. But then I found out that one of my best friends, from 11 years of age, woke up to find that her oldest son passed away in his sleep. They have no idea of the cause of death. He is a 16 year old athlete so he seemed in good health but obviosly something was awry. I am hurting and I think most of my pain comes from knowing she is in an inconsolable state of grief and I can not help her at all. I can not help her or her sons . . . and I love her so much and want to somehow help her through this process. Unfortunately, the airline won't refund or transfer my ticket so I have to go to Alabama as scheduled - can't delay the trip. But part of me knows that I will probably serve her best later when other people have finished bringing over covered dishes and calling. But Tim was an amazing young man . . . he was twice the man that most grown men are - he cooked, cleaned, got amazing grades, well-rounded athlete, loving brother, wonderful son - and humble. I am most comforted because I know my friend is a woman of faith and raised her children in the knowledge and love of God. She is one of the best moms I've ever seen - to watch her interact with her children is to see love - they love her and she loves them and it is an active, visible, tangible love. So all of this has caused a crazy emotional rollercoaster. November into December has been sickeness, trife, pain, devastation, horror, love, happiness, family, caring, support and encouragement . . . through it all it has also meant a lot of prayer. Thank God for being raised on a firm foundation of faith, trust in God and belief that God will see you through any trial. My grandmother put it best "Faith is something you use not something you have."