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.