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."

Don't know I why I don't call . . .

I am not sure what is wrong with me . . . but apparently there is something wrong. I thought I would use this blog to come clean and be very direct and honest about what I'm thinking and feeling as I go on this journey but that has not been the case. I find myself wanting to "tell it like it is" but at the same time avoiding posting because I don't want people to know that I am not handling this well or to know that I am sick. Maybe I don't want to know that I am sick and when it is in print, there is a permanance - you can't run from print, especially on the internet. So, my current reality is the good, the bad and the ugly. The LUPER is no joke. It is a daily struggle to get up in the morning, to functioning and to staying somehow in a good place. I am excited to wake every morning. I don't take that for granted because well, to be honest, I am never sure that is going to happen. Often when I go to bed I feel like this could be my last day. But I get up and I am grateful and excited. But then I try to move and the pain - the pain is ever present and causes me to cry. I begin almost every day of my life in tears. I get myself up and take a shower and get dressed and hobble down the stairs and greet my best friend with a smile and a "I'm o.k." Now my best friend is brilliant and she knows but she doesn't pry too much, she takes me to work and then makes sure that I eat throughout the day and she takes me home and encourages me to eat dinner. But she knows - one of the reasons she is my best friends is because she always has my best interest at heart and knows when to push and when to let me go but she is in no way afraid to push. I come home and I know I should eat - I need to eat, it's important to eat but I rarely eat. I often fix food but the amount that I eat is so small. Now this is of great concern to me because when I don't eat on a regular basis my body goes in to starvation mode so I don't burn calories, I keep weight and gain weight - and the last thing I need is more weight - I mean honestly. I try to eat, three times a day - now that it's cold, I can't get enough Oatmeal or Cream of Wheat . . . that is great, but then it all goes down hill. I will drink all day - fruit juice being my favorite thing - but I have no desire to put food in my system and no taste for anything. Not even my favorite things. Its crazy and its not good I realize that so I try . . . I really try. But yeah, food is not my thing. Not even sweets even though i find myself surrounded by food. I mean I understand that when you are sick and undergo extreme treatment like chemo things change dramatically. Now the interesting thing is that there is no nausea, no hair falling out, no weightloss . . .so I look like I'm fine and since that is my thing "I'm fine" so people tend to believe me . . . but in reality I don't remember the last time I was fine. I think the closest I've been in a long time was when I was in steriods in August and September. But right now I'm not fine. I am in pain, weak and worried. Don't get me wrong . . . my faith is strong and I truly believe this is my Season of Healing. I feel that I will come out of this experience, stronger, healthier and motivated. Going through it - its just not that easy. I feel like I may be truly coming to grips with all that the doctors have said to me . . . it is sinking in and it is scary. I don't want to die. I have too much to live for - but in reallity, I am dealing with life threatening illnesses. Diseases - dis - ease . . . yeah, that's about it - no ease - lack of ease - without ease - that is the life I am living . . . a life of Dis Ease . . . and waiting for the healing. The healing that I know will come because I am confident that it will come but on the journey - it is scary. All that being said - the spot on my kidney is gone. Yepper, gone - it just disappeared. Like it was never there. And my kidney function is great . . . but don't get too excited. I have 2 more weeks of treatment. Because it could still be there - post treatment if it is gone and the kidney function is still high then there will be excitement - until then, there is some relief, a lot of praising God for mercy and some vigilance. But then there is the Lupus - of the 2 diseases, it would seem lupus is the less devastating but no - it is the one that may take me out. Right now it is "aggressive." What does that mean, it means it is reaking havoc on my body. It is causing swollen joints which make it difficult to walk, move, or sleep. - it is causing pain - extreme pain. My actual skin hurts. And oh the strange discoloring on my skin - it is horrifying everytime I see another strange colored spot or discoloring. And I have a tooth-ache. I think I have a cavity. The problem is I am terrified of dentist. I would rather go to the gyn then go to the dentist. I do not go, do not want to go and can not see myself going to the dentist. But I may not have a choice in this one. The only place I trust is Miller Oral Surgery - they took out my wisdom teeth when I was 21 or 22. It was pleasant I wasn't in distress and not a lot of pain. So if I have to that is where I will go again, but I really don't want to go . . . but I'm not dealing with this pain well, so I may have to break down and go. I have a housemate. I see her almost every day and she knows none of this. I saw her this morning, she was on her way to church and she said "Good Morning" and I said "Good Morning" but she had no idea that I was frozen in place by pain. Why is it I can't be forthright and honest with the people closest to me - the people that care - the people that will help ?? It is starting to bother me - I have to stop putting on a brave face - I have to stop pretending that I'm o.k. - I have to admit that I need help and that I'm in pain. I have to wonder if I am adding stress to my body by holding these little facts in . . . How to let go and admit your honest state of existence - how do I do that ? Why can't I do that ? This is a good start - this is my first step . . . I know there are many people along the journey - many scarecrows, tin men/women and lions . . . I need to reach out and grab their outwardly stretched hands and let them help me down my fuschia bricked road. (You know pink is my signature color) : )

So NOT Happy . ..

So, it seems as if I am being made to face certain realities about LUPER . . . one, it is painful, two, it is painful, three, it is painful and four, the medicine that is healing me is also changing me. I now exist in a world of inflammation and pain. I have discovered that I can no longer say I'm tired because tired doesn't begin to describe it . . . I am exhausted. And I am weak. I have trouble walking, sitting up or even talking on the phone. I just want to sleep. The upsetting thing about that is the pain I feel when I lay on my side, or my stomach. I naturally sleep on my side, either side, but my hips hurt. Oh, this whole joint pain is just way too much. I think the inflammation is less but it feels horrible. Everyone that knows me knows that cereal is my favorite thing ever and I LOVE DAIRY. Not just like most people but I drink about 2 gallons of milk a week on top of cheese, ice cream and my cereal addition. When it gets cold, I make a 20-ounce cup of hot cocoa every morning. Dairy makes me happy . . . but no more. I don't want it and my body isn't tolerating it very well. Although I was able to eat mac and cheese last week. But it wasn't the most delicious cheesey goodness ever. And that is sad. Last year when I broke my knee and hip simultaneously the doctor remarked on the strength of my bones because the blow would have caused any other person to have at least 2 fractures or broken places. So, I look at it as investment but it also taste so yummy but no more. Dairy doesn't appeal to me and is no longer deliciousness. I guess its not the worse thing that could happen to me but it's upsetting. On the upside, I can't get enough of the yummy hot dog deliciousness. It's a strong strong desire - hot dogs, you know street vendor hot dogs, 7-11 hot dogs but I did have delicious hot dogs at the E this weekend at Oktoberfest. This weekend I went to the E for homecoming. The E was live and the people were amazing. I was treated so well and everyone cared - it made me feel special. And I was glad I went but I also realized that there won't be too many of those weekends for a while. My body definitely needs to be in a state of inaction. I plan on doing nothing this week in hopes of making it to my nephew's football game on Saturday. He is such an amazing young man. And I realize that I may not make it but I am definitely going to try it. And then at the end of the month I'm suppose to go to the circus with my 3 younger cousins . . . I pray I make that but I am not pushing myself. I will do nothing that will cause me additonal pain, discomfort or stress. I am so not happy right now . . . I'm constantly in pain, I have no enegry and I can't get warm. I am at a severe level of discomfort and I don't want to complain because no matter how bad this is I realize that I am beyond blessed.

A Season Of Healing

In some ways I feel that a lot has happened since my last post and in others I feel like nothing has really happened. I haven't blogged basically because I've found myself really tired. I've started using my phone to update my FB from bed. So it is rare that I sit down at a computer. I guess an update is definitely in order. I got a job ! Yepper, a job and it has health care benefits. So my whole life is changing for the better in many many ways. I am so grateful for a job. I love this job and it makes me happy to get up everyday and go to work. I'm getting used to the schedule and find myself taking a nap when I get home and still going to bed at 10:30 or 11:00 : ) But it is good. I am looking forward to being paid every 2 weeks and being able to splurge on things like medicine and fresh fruit. So, now I have to formulate a plan to repay the people who helped me in my deepest darkest time. I don't want to stress myself out about how I'm giong to do it or how quickly I'm going to be able to do it because I am suppose to elimnate stress from my life. I also feel like each person who reached out to save me is patient. I have found myself in a lot of pain and there is a lot of inflammation. I'm afraid my ankles will never come back and I'll never be able to rock a dress the way I used to . . . oh, the good ole days : ) My kidneys hurt so much now and days(or is it now in days?) but I know that the chemo will do its job and the pain is temporary. I daily find myself trying to decide if my pain is from the lupus or the other issue. I know the inflammation is all lupus and honestly it has never rocked me the way it is rocking me now. It is truly rocking me to my core. But this too shall pass. I've had so many feelings racing through me over the last month and a half. I have dealt with fear and pain, happiness and love - I've been depressed and down and then elated beyond words. It's a crazy rollercoaster. I am not fond of rollercoasters. I am trying to focus on the positive . . . I think it is the pain that drives the negative. At times it is indeed intense. As I sit here and type, my spine and kidneys are killing me but it feels better to sit up than to lay right now. Of course that could change any moment. My body is fickle right now. I am learning to ask for help and I am learning that there are a lot of people in my life who are willing to help me. It is beautiful. I am learning that it is o.k. to express pain. I am learning that everyone doesn't expect me to be strong and so maybe I shouldn't be disappointed in myself when I am all too human. I feel vulnerable and I think that fuels fear also. I don't like feeling helpless. I am the person that helps out and reaches out to make other people's lives better. But this is the time in which I have to figure out how to reach out to myself and make my own life better. I just don't want to be selfish. I feel like other people could be using my help and I'll be o.k. Further evidence that I'm a work in progress . . . and I'm still learning. I must say I'm overwhelmed by the support, care and love I've received over the last month or so. I'm not surprised because I try to ally myself with good people who have good morals, good ethics and good hearts but it is truly amazing to see that in action. I am tired now and feel weak. So I am going to go to bed. I will try to make the time between blogs shorter. Thanks for reading. I know that I am blessed in the midst of adversity and that this is truly my Season of Healing.

Maybe I'm not o.k. with it all . . .

Last night brought harsh revelations. For some reason, I became violently ill last night. I can take almost any pain but being sick on the stomach is horrible. It scares me and it hurts and I want my mommy. I am at my most vulnerable and needy when I get sick on the stomach. It's one of those rare times when my daddy just can't make it better. For whatever reason, I was sick for almost an hour - it was just the most distressing experience. And when I was finally able to get it together I couldn't stop crying. I cleaned my bathroom and took a nice warm shower. The shower helped to calm me down and make me feel better. But it also allowed me to think . . . and I realized that I am not o.k. with being sick. My thoughts went to the process and treatment I am about to deal with . . . and I cried some more. Because I am scared. I have to now be really honest with myself - I am scared - scared of what I don't know - scared of what I may have to go through - I immediately wanted to go to the barbershop and get all of my hair cut off . . . and I think this weekend I will cut my hair off. I don't want any meds or treatments to take my hair - I want to control something - so I think this weekend I will cut it off. Last night I was confronted with illness - with pain - with the fact that sometimes your body does what it will do without your consent or regard for how you will feel emotionally - last night I realized that I am not o.k. with being sick. I think I have a good attitude and I feel like I really am going to be whole and healthy . . . but when confronted with what I may have to go through - what I may have to endure . . . I am not o.k. I am scared. I want to be o.k. and I want to be strong . . . I want to have the right attitude and the best outlook . .. but I think that the "night of reckoning" was necessary. Last night I didn't have the option of smiling it away or even playing through the pain - last night was primal and raw . . . last night my body made me acknowledge it and what is going on inside of it and what could happen with it . . . And I'm not o.k. with it all . . .

Play Through The Pain . . .

The steroids they gave me were fabulous . . . they reminded me that I could indeed be pain-free.  The steriods also said to me that my conditions no matter how horrible were treatable.  The steriods allowed me to stand up after sitting down without feeling like I had atrophy.  The steroid was like nothing I had experienced because it took away a myriad of pains and problems . . . of course there were some side effects.  I WANTED MEAT ! not just beef but steak.  I had the overwhelming need to eat MEAT !  I wanted steak - not hamburger but MEAT !  This was a source of amusement for me and my friends/family.  As they watched me take my place at the top of the food chain : )   The steriod also did a good job of making me eat breakfast, lunch and dinner. 

I found myself eating several times a day and getting a snack in, here and there.  I had not eaten three meals a day in so long . . . I  had developed this habit of eating around 1:00 p.m. and then maybe a snack or something light at night but then basically eating once a day . . . now I justified this by making sure I was eating something healthy . . . 2 veggies and a fruit with each meal.  Yepper, I know, this was not good but to be honest, I really didn't have a desire to put food in my system.  I didn't have a taste for anything, except Jackson House and there were times when I didn't want that either.  So the steriod, even though it made some foods taste weird, jump started my appetite and my metabolism.  All of a sudden, I had this energy.  I didn't take naps . . . I could stay awake for 12 - 14 hours and that was rare.  I took naps everyday because I could barely keep my eyes open after 5 hours . . . but that steriod - it had me alert and aware. 

The steriod took away all the tingling and nerve sensations . . . it was amazing.  I could stand to make dinner without pain or discomfort.  I was amazed that I didn't have strange pains and tingling going on.  

The steriod was the most amazing thing that happened to me in so very long . . . but alas, all good things come to an end.  Apparently, you can't stop steriods cold turkey so they weaned me.  The weaning process is not pretty.  All of a sudden I was feeling.  A tingle here - a pain there - a stabbing here - a throbbing there . . . and it was all too real.  At one point all the pains flooded into my body at one time.  Wednesday, September 7th all the pain flooded into my body at once . . . within a one hour I went from comfort to absolute torture.  My body turned on me . . . and I became very aware that I am in a Season of Healing but that it is a process.  I felt very betrayed by my body because it seemed that every body part was hurting and that every muscle was agitated.  And for the first time I was very honest about the pain . . . and it felt good not to pretend.

By Thursday morning I could only focus on the fact that my body was responding the way the doctors wanted . . . if my body was in full flux and I was experiencing complete pain then I could go to the hospital and have the next battery of test run.   All this pain leads to healing !   I focused on the fact that if my body was feeling all the pains and my nerves were sensing  - then the steriods had worked and I was ready for the next level of treatment.  On Thursday, September 8th, I just wanted to lay around and sleep but I still wanted MEAT !  So the weaning was happening and the steriods had worked but oh, yeah, the Susquehanna was about to overflow.   I went to my best friend's house to help her pack her first floor.  She and her family were going to come to my house if they needed to evacuate.  I got the call from my housemate that we lost power.  My best friend wanted me to stay with her so that if we needed to evacuate we would be together.  My best friend and her husband are amazing people who constantly look for ways to help other people and be of service.  So they were very serious about me staying with them.  They took great care of me - made sure I ate and was as comfortable as I could be.  I was so completely exhausted and so full of pain - all I could do was lay on their couch.  On Friday night, my power came back on and I returned home.   Oh, yeah, I didn't take my medical test on Friday because I thought the hospital would appreciate me staying home . . . in the midst of the flood craziness.  But of course I was in pain, so my doctor advised me over the phone and gave me pain meds.  

My birthday is coming up . . . the one day a year where I feel like I am special.  I spend that day surrounded by my nieces and nephews if I can . . . I always hope for friends and family to bring the laughter and remind me that my life is worth living because I am surrounded by people like them . . .  My closest circle took me out to dinner on Saturday and it was good . . . minimal pain and maximum laughter.  I feel so loved and cared for in the midst of this circle.  I think the love they bring is as powerful as the pain meds.   But when I got home I took some pain meds just in case : )

Today, my nephew plays varsity high school football and I'm missing the game (McD).  I rarely miss anything my nieces and nephews participate in - nothing is more important than my nieces and nephews.  I woke up with a slight headache and sore throat.  I am pretty sure it's allergies . . . but I am tired.  This time last year I would have gone to the game and pretended that I was fine . . . but no more lies, no more deception, no more pretending . . . and he is o.k. with me missing this game.  Of course I am going to have to make him a chocolate cake with peanut butter icing because it's his favorite and I adore my nephew : )  

I am in minimal pain today, more discomfort than pain.  I will have to stop taking pain meds now because my body needs to be in full flux tomorrow when I am going through my testing.   So within the next few hours my arms will start to tingle as if I am repeatedly hitting my elbow, my left hand will not really work but it won't be swollen (the muscles will just be inflammed so that the nerve msgs are not being sent or received correctly),  charlie horses will take over my calves and every muscle in my body will start throbbing, my lower back will feel like someone is stabbing me repeatedly because of my kidneys . . . but if my body is in full flux - if  I am in pain and if I am sleepy then the steriod worked, my systems are functioning at high levels and I am ready for the next treatments. 

I can play through the pain because I know that this pain is temporary . . . there are medicines and treatments that will give me comfort - I can live pain-free . . . this is all just a process.  I play through the pain because the pain . . . I've been thrown for a LUPER but it's o.k. . . . this is my Season of Healing.

I was in the car with you but I have no idea how we got here . . .

So many of my friends surrounded me with support and encouragement over the last year.  Many of them knew something was wrong but had no idea what it was.  My FB post were sometimes cryptic and sometimes just so vague that no one could tell what was going on (physical, emotional, mental, financial).  They were definitely with me . . . they were in the car but had no idea where we were going . . .

I feel like this is the time when I explain things . . .

Sept. 1, 2010 I fell and fractured my knee and hip simultaneously.  That began what seems like a downward spiral.  The medication used to treat me after the fall caused some damage to my body in different ways and as a result I got sicker. I am not one for graphic or medical details . . . so that really is enough said.   The fall also led the doctors to the brain tumor.  The tumor was a strange and rare anomaly - it was just a tumor.  And the cause was a car accident I had when I was 13 in which there was head trauma.  So that was behind me and I felt good about recovery.  I am still really careful and don't want to ever hit my head.

Right after the surgery, I recieved a very large medical bill and notification that I no longer had health insurance.  Oh, snap, I need to follow up on the brain tumor and I have all these other medical issues what am I going to do ?  Well, I had just started a new job and I had income but I did not have health insurance.  So the search was on for affordable health insurance.  And no matter how sick I was or what  was happening public assistance would not approve me . . . so it got really scary.  And, lo and behold, there was no health insurance I could afford.  So, in February I started a horribly stressful existence of choosing monthly between mortgage, food, meds, utilities . . . and I did that terrible dance til June when my contract ended and I became umemployed and had no health insurance.  

So, yeah, no paycheck since May 30th and no health insurance made this a very scary and difficult summer.  My housemate kicked in big time and used her savings to cover things.  And her ability to pay saved me big time.  Special thank you to her for EVERYTHING. I often think this cryptic year of living with me knowing something was wrong/going on and having no idea what drove her crazy but she hung in there with me - prayed with me and tried to care for me.  She's a blessing. 

Back to the matter at hand.  So, yeah, I kept getting sick . . . now sick is one of those words that could mean a cold or could mean a disease . . . we'll suffice it to say that with me yeah, it ran the gamut.  I knew the stress was affecting me . . . and it was horrible.  I watched all the depression commercials thinking that I could avoid it all by not acting like those folks : ).   I all I wanted to do was sleep . . . no engery and I just couldn't really eat . . . and I felt like I was in one big knot.  But I seemed to be handling it and I thought I was handling it . . . but my body was not handling it. 

So, a few weeks ago I woke up with a strange tingling in my hand/wrist.  I got up started moving around and it just felt like I fell asleep on it the wrong way.  Turns out my body was starting the "stroke process."   That's right at 41 I was in danger of stroking.  So my first lesson is MOVEMENT IS GOOD!   Even when I'm sitting I now move my legs or arms . . . open and close my fists . . . make your body move.    The result was also being put on a steroid.  The steroid helped.  When I went to my doctor for the follow up I got a different doctor in the practice and she has made all the difference.  I think the fact that she took a urine sample and could see the blood suspended in my urine made her a little freaked out but it has been happening to me since April so I am used to it.   Yeah, I did just say that I was used to urinating blood.  I didn't have health insurance - I had no idea how I was going to feed myself - I couldn't afford meds, so I just sort of rode it out . . . tried to eat better and drink more water and cut down on soda . . . you know that sort of thing but again, I thought I was dealing with it. 

Anyway, the ER visit, steriods, and doctor who knew I shouldn't be urinating blood all came together on a Friday morning and sent me into test/treatment mode.  

And for a few weeks I felt better than I had in over a year.  I went almost 3 weeks with no pain.  Unfortunately, the SHOCK they did to help my systems worked really well and the weaning process has started.  I mean its good the shock worked and I'm glad it worked so well, but as they wean me from the meds I am beginning to feel again.  Today for the first time in almost a month I slept past 7:00 a.m. and I am tired.  They told me what to expect so I was prepared to have a few off days.  For the next few days I will be in pain and a little listless.  I am not looking forward to this . . . even though I know it's really only a few days.  On Friday, I'll spend the day at the hospital letting them poke, probe, picture and draw fluids.  And then it is on !  That's right !  It's on !   The Season of Healing . . . my journey back to a place of health is a reality.  

Thrown for a Luper

I recently received intense medical diagnosis.   I think that I'm handling it well . . . that I have perspective.  I am engaged in a daily conversation with my body about what I need from it and how best I can serve it . . . but nonetheless . . . I was not prepared to be 'thrown for a luper."   I call it Luper because it is the combination of the auto-immune disease and the disease treated by my oncologist - these diseases have caused my body to become a very violent place.   These 2 diseases are so very different and yet so similar . . . most importantly these are both diseases that are life altering but not life-stealing. 

I think that what you speak - accept, embrace, call - comes to existence . . . so I am choosing to name the combination of disease but not necessarily call them individually by name . . .  I will not give them providence, power or domain.  

My illnesses began a year ago . . . in that year I have suffered unceasingly both physically and mentally.  The actual diagnosis of this issue however, is my means to HEALTH.   This diagnonis is what I needed to get the medical treatment I needed to become the strong healthy person I deserve to be . . . so this is my Season of Health . ..  healthful mind  - healthful body.

I invite you all to follow me on my journey.  Some days will simply be me logging all the craziness that occurs in my oh, so violent body . . . some days will be how I handle the stress . . . some days will be medical updates . . . some days will be spouting about the ills of the world . . . but rest assured this blog will be about The Luper.