Done being told....

Well, its been quite the week. Monday I thought would provide answers that would bring us closer to a diagnosis. To me the diagnosis is imperative in order to move forward with my life. Do I continue trying to work, can I continue to work, what aspects of my life need to change and ultimately what symptoms can we treat to reduce my pain, discomfort, seizures, etc.

Monday, Tuesday came and went Wednesday the pain management specialist called and basically everything was inconclusive. Lupus doesn't look likely however some necessary tests were left out that would be necessary. I have an appointment to see a rhuemetologist in a couple weeks. They did show equivocal (not positive) presence of recent exposure to the fungus that is Valley Fever....also means pretty much nothing. I will follow up with an infectious disease specialist Monday just to get cleared or minor treatment if required.

I have had two awful seizures in the past four days. My body was just barely starting to feel functional and I was hit with another at 7:30 last night. Every muscle in my body is screaming despite norco and pain meds. My ankle feels like its sprained from the unnatural forced twisting. Days like this - the doctors don't understand my pain level. The medications just aren't enough.

I have been told all these ridiculous things about causes. I have put up with being pushed around. I have been told don't cry when your having one even if the pain is excruciating. I have gone along with all of it. Last night seizing alone, I realized I was going to fall off the bed. Before I could I somehow rolled myself onto the floor. My foot now was kicking the bed frame and I couldn't stop. I screamed for help, tried to text Brett (who was outside). Finally Sean came in and found me and got Brett. In all this I decided I am not "accepting that this is OK". I am not OK having the 2-3 times a week completely uncontrolled. I am not OK with my current pain level I am expected to "tolerate". The doctors have to do something. I need to get something more than this.

I don't know whats next but something needs to change and very soon.

Beat Up, Beat Down and Weakened

I am feeling beat up, beat down and completely tortured. I had a seizure last night. As they go, it wasn't horrible. However, it somehow managed to twist my spine into a knot. My neck and upper spine and right hip took a beating. The event lasted roughly 40 minutes. Shot of Ativan stops things usually in 20 mins, this one 20 min was just the beginning of the slow reduction of movement. On a good note, i could breath the whole time and when I woke up this morning none of my limbs were facing the wrong direction - although I am pretty sure there are muscles in my neck that would greatly prefer my head to be facing my right shoulder vice forward.

I tried to get up about 11 am, ate a bit and went back to bed with my shaky, jerky, twitchy body. The good news is when you have been twitching for 12+ hours in an ativan induced sleep - your brain sees nothing wrong with going back to sleep while physically active.

Pain - is there a life without it? I saw the pain doctor. I explained that I can't get below a level 6 (when I am lucky). I average between a seven and eight level pain 24 hrs a day 7 days a week. I wonder if the pain meds are even worth taking. She gave me nothing, said lets wait for the test results. So here I am with pain meds that do so little. I remember the last time I took percocet, I swore I would never take it again. I hated the side effects. The fact that it deleted my memory of every event during the time I took it. Now I lay here and wonder which is worse? Being present and an active part of my life or not being in severe, tormenting pain? I am so angry that I am being faced with such a choice. What happened in my life that I am here in this nightmare?

I am so miserable physically and so drained I lay here praying I have lupus. Does anyone know how horrible that is? I have dear friends telling me "you don't want lupus". No, I don't want lupus I don't want to be sick. I didn't ask to have pain in every joint in my body. I didn't ask to have seizures
I just want someone, anyone to figure this out and do something to treat it. Help me somehow!

For God sakes as I lay here my left foot hurts so bad. I haven't been up more than 15 minutes today, if I put ANY pressure on it in the wrong spots it feels broken in every single little joint (yes I think I could count the tarsal joints blindly right now). The pain is up into my ankle.

In my head, I want to run. I want to run like I used to, feel all the tension melt, feel sweat pour down my face, legs, feel the wind dry it as fast as it forms, feel the burn in my lungs, quads, calves as I push myself past that invisible barrier. I want the satisfaction at the end of "I did it!" I kicked ass and my body hurts so good!

I have thrown caution to the wind a few times (not since things really fell apart in August) but if I was clear by the doctor's I would get on the treadmill to walk, the music thumping in the headphones and my body would just go I would jog just to feel that familiar cleansing pain. In the end it was never good but worth it at the time. I will never forget the first time, after released from my hysterectomy, tears rolled down my cheeks for a good mile. I was so happy to be running again. That was two years ago this month. I cried because it felt so good, but also because something inside me knew that wasn't going to happen for a while.

I miss ME. What happened to Sarah the independent, strong, confident woman. Sarah the wife - I am not an equal part of the team, I am a patient, requiring care (wonderfully done I will add), our sex life is nonexistent or as I say I am broken. Its hard to have much intimacy when the roles become caregiver/patient, when it hurts to hug or even hold hands. If those things hurt, I will spare details of how other more intimate parts of my body feel.

Sarah the mom - this is the most painful. None of us are ever perfect parents, its just not possible but mom in severe pain, repeated surgeries, pain meds, seizures - doesn't leave much left. In addition, they have less of their dad because while we should be caring for them as a couple, he is busy being a single parent and taking care of me, out of town dr appointments, lab work, acpuncture, therapy (so I can learn to cope with all of this), picking up meds, trying to get his hours in at work despite their needs, my needs, being up in the night with whatever my problem is, make ends meet with my reduced income. His list never ends. I don't know how he does it.

My role as a daughter, sister, granddaughter, friend - well I think that is wrapped up above. I try to be involved, be available, supportibe when they need me. The reality is I am just not capable. Where is my drive to succeed, my optimism, my style, my toughness, my career, my hobbies, my body.

I try to work from home - it isn't happening. I tried today, 10 minutes and back to bed. I have no leave, haven't in God knows how long. Days like today, the past week, the disease, the pain is winning. I can't do it. I lay here and wonder how long I put in sick leave. It is bad enough having no leave, no disability - what about the work I committed to complete? I have always been proud of my work ethic, my ability to always meet the deadline. I was synonymous with dependable. THAT word and my name have long since disconnected. Having Sarah do something means disappointment, missed deadlines, minimal quality performance. Everything I always was and always strove to be is GONE. I am THAT employee, that person that I wouldn't want to deal with.  I don't want to give it up, I love everything about what I do. How and when will I know if my body can continue to support that dream?

Fun, Friends, Fatigue and Pain

I can't tell you how many blogs I start and never finish or finish and never post. Something just is off in it. I re-read and I feel my words aren't really an accurate reflection of my emotions or experiences. I drift off topic, babble, or I just know that the point I am reaching for is somehow missing. This struggle is representative of my daily challenge - no matter how wonderful things are I am constantly reminded that my body is rebelling. The negativity of illness, pain, fatigue seem to constantly be fighting to overshadow the wonderful blessings life offers.

This weekend I have started two and they sit in the drafts folder. Each very different from the other. One is about the different types of friends in my life. The other, my screaming frustration in dealing with whatever this journey through pain is.

I was blessed to spend time with great friends both Friday and Saturday night. This week phone conversations and emails from friends have touched me and provided strength and reality. Somehow each experience was interrupted or changed by the fatigue and/or pain.

Friday night we got together with a friend from childhood, her husband, as well as some local friends to enjoy a favorite band. Saturday was a nice, long sushi dinner with wonderful people we don't see enough. Laughter and conversations were plenty.

I had a wonderful time, I am so lucky to have friendships that survived not just the nonsense of elementary, junior high and high school but careers, marriages, and thousands of miles. We get together and the conversation, the laughter is as if we still see each other every weekend. Add that the newer friends that have been through the last few years with us. I consider myself beyond blessed when I look at the friends God has blessed me with.

Friday, the band was awesome as usual, drinks were flowing - a true St. Patty's Day celebration! Getting ready to go out, I would always wear stillettos! Concert, club, bar - stillettos required wardrobe. I was just jerky enough that while considering my outfit, I realized not only did I not have the energy or pain tolerance to try a couple outfits - I also was jerky as hell and thus asking to fall if I wore my preferred heels.  Jeans, t-shirt and chucks that's it! No rings fingers are swollen at joints. Dancing, not even an option, my balance is off for one, two my joints can't tolerate much movement at all.  Drinking - very minimal with meds as well as my body just doesn't like it these days. I sat and every little bit walked around some. Two and a half hrs into the night, exhaustion, back and hip pain is a 6/7, by the time we said our goodbyes and got home my pain level was at 8. Fighting tears from the pain I took everything I could and waited. Two hrs later I finally got down to a 6. The pain stayed into the next day.

Saturday night quick throw together (Time up in front of the mirror = less fun with friends) - I am getting pretty creative with this. Dinner was wonderful. Two hrs from meds bam pain. Nothing more to take, 6/7 level pain. Not long after, my ears turned red, lips turned red, red splotches, upset stomach. We raced home, horrible end to perfect night. This doesn't begin to address the pain.

Sunday, slept late and thought I can do a little housework. Started a load of laundry, picked up the bedroom (5 mins max) and vacuummed. Yep pain and back in bed for about 4 hrs. Some chaos with the kids later on - I feel like I need my whole body massaged 24 hrs later. Chaos later in the day, getting dinner - welcome jerking. I slept about 2 hrs woke up because I got into yhe wrong position and OUCH. PLUS, the dreams were so non-stop and exhausting I felt almost better off awake.

I explain all of this out of frustration and to explain, document what is happening. I have people tell me I hurt because I am to still, if I would do more physical I may feel better. I have tried over and over and over. Arguably everyday I do something physical and everyday I suffer pain from it for days to follow. If I walk much of a distance I have the pleasure of my right leg turning inward and then only dragging behind as I walk. Yoga only do the most basic gentle stretches per the doctors, even these result in tremors and jerking often times. I keep doing, keep trying. I don't know how to explain the pain, the reality is it affects every aspect of me. I am so done hearing well what if you, well maybe if you just...I know its well meaning but after three years I am starting to feel like what I need is a diagnosis not - try to walk, sleep less, try stretching, why does it hurt, why can't you sleep....? Ahhhhh

PS: I wrote this mostly Sunday night but didn't get it posted. I saw my pain management doctor yesterday for the first time since August. She is echoing my strong feelings of a rheumatoid basis, lupus or RA and if that fails she is going back to movement disorders again. She pulled up test results during the appointment from my hospitalization in August. She pointed out that the lupus panel results were basically inconclusive based on the amount of steroids they had pumped into my back over the past week. Despite the steroids my ana levels were slightly elevated. I guess we shall see what the next week tells us.

Loneliness - The Naked Truth

Loneliness. Everything about this whole situation is just that, lonely. I have all these wonderful people everywhere that I know love me. They all seem like reflections in a mirror. I hear the words of concern, I see the loving actions, i feel the loving hugs. Somehow its all there but it feels distant. It seems no matter what in the end I am alone.

No one else feels the pain, the frustration, fear. I am alone in bed lucky if I'm sleeping, coping with the pain while everyone else goes to work each morning. I remember days when I would drag myself out of bed tired from travel, work, overtime. Now I lay alone wondering if I will ever be able to feel that tiredness again. Feel the source of accomplishment of a project completed. Will I ever again feel the pride of being part of something so powerful that I know we are saving lives?

My kids ask for a ride somewhere, girls day, shooting with the guys, mobbing in the desert. I pass. Instead, they find substitutes and I lay alone. I feel the disappointment of precious memories missed, the frustration of yet again Mom can't be there. I lay alone as I missed my sons first wrestling matches of high school. Instead of seeing him accomplishing dreams or being there for his defeat, I am coping with pain, seizures whatever life has thrown at me. My children have had to learn to protects my disappointment and their's by "understanding", not wanting me there anyway. There is no understanding. Its nothing more than a word we are supposed to use to be positive. Support each other...

My husband no longer has a wife. I am some kind of dependant nightmare. I can't drive myself anywhere. I am emotional. I am on pain. Our time together is my illness, my pain. He is both parents, both incomes, my caregiver. While he should be at work,  meetings, on travel he is chasing a rainbow of diagnosis with me. Looking for the leprechan at the bottom that just doesn't exist. I lay alone and watch the career he has worked so hard to build crumble.

I watch as friends bring me lunch, dinners, come to visit. I have a glorious time and shortly send them off to return to their lives and I return to pain, loneliness. I have no basis of normal conversation anymore. I bore myself just hearing me talk. How am I feeling? How did the test results come out? How is the pain? Do the doctors have any ideas? What's next? Are you able to work?

I feel like shit. Everything in my body basically hurts, I am so exhausted I could sleep 24 hrs a day. Instead I say something like OK, fine, good.  I am embarrassed by pity and concern afyer so much time. I don't want to expand on what hurts, why do I think it hurts? What did I do that might have caused it? Have you tried...? I have no clue.  Just ask the doctors, "I am stumped" "Its all in my head, "I need Dr House "(a fictional character that solves cases because he has a script)...

The tests, ya well they are "normal". The fucked up part - I am hoping and praying for bad test results! I WANT the phone call that says, I have bad news. At this point, if its "normal" I don't want to know. Normal has somehow become bad news!

What's next....well that would be another specialist, some new meds that make me somehow make me feel worse than I already do and they fix nothing In fact, if we're real lucky they will create a new symptom. Remember this step includes: renting cars because a Ford Expedition and $4.25+ a gallon for gas isn't affordable and adding a car payment right now makes even less sense. My husband misses a day or two a week of work driving me 145 miles each way to the specialist of the month, who will bless us with 10-15 mins of his or her time, order tests that have to be done near his office (on a different day). (Insert here - Being a relentless optimist I am sure this is it, we have found the answer, I emotionally embrace what's coming.) Oh, no fear the driving isn't over, I will go back again after the test results were normal for a follow up and "This is probably all psychological (because I'm the best dr in the world and if I can't figure it out then you are making it up) OR " Well, since the tests are all normal you should probably get xyz tested but that is done by next months specialist, I can give you a few referrals"...and yep you're right start process again.

Work, hahaha... I have the blessing of being able to work from home. How hard can it be to just put the laptop next to me in bed, on my lap on the recliner in my jammies at that? No effort, right? My body and brain disagree! My brain has dropped 40 IQ points, just mush. The pain, exhaustion/insomnia, meds all play against me. I turn the computer on and before its even loaded everything I am asleep again. I wake up if I start hurting, the phone rings or someone comes home. Caffeine should help this problem, "we all get tired during the day I have heard SO many times". Caffeine, yep wakes me up (maybe 20% of the time), or it gives me terrible stomach problems, if it works, I start typing, next thing I know my right arm is tremoring and my right hand resembles more of a claw than a hand...neither are very effective in typing or using a mouse of any sort. The tremor and caffeine stimulate the pain, now I am exhausted, have more pain and I can't be still so sleep is out of the question. Everyone has generosly donated thousands of hours of leave which ran out sometime ago. I accept taking leave without pay. I have learned to accept that deadlines that I would have never missed come and go - project incomplete. My only response - I am doing the best I can. All those years proving my 100% dependability, initiative, strong work ethic, intelligence, ability - thrown out with my extinct, dreams and goals. I've been told perhaps I should consider my options, quit working? I can't medically retire with no diagnosis! We can't keep paying for the mounting medical bills if there is no income because we are chasing answers. If I had a diagnosis perhaps I will know what I'm facing, get treatment instead of bandaids on the gushing wound and I would HAVE options.

At what point do I stop looking for answers? At what point does this process become futile? I am a fighter, I was a fighter. Am I fighting something that doesn't even exist? If I stop fighting do I accept that this will be my life forever? Me, watching everyone else live their lives, their dreams while I lay in pain and exhaustion for no reason? Giving up a career, retirement/disability I worked hard to have that security?

I have made a point to be positive this entire battle. I have been told that it will help heal me. Don't give the negativity power. This blog sounds negative. Its not meant as that. It's me putting words to my reality I am living everyday. I am taking off pretty dresses, the makep, the stilettoes. Here I am in my pjs, broken out skin and uncombed knotted, hair falling out, messy bun.

I am beyond thankful and blessed by so many amazing people. I remember it and feel it all the time. I have to be honest though. I don't share this for pity. I am tired of pity. I am tired of being a burden. I am tired of needing help and I am not asking for it. I am sharing my reality for someone out there that is going through their own struggles. You're not alone, I'm not alone, I feel alone but it is my fear, my pain, my anger talking. I don't know if answers will ever come. Today I had tons of blood taken. It took everything in me to get it done. My greatest fear is more normals. My optimism is gone. I dread getting results for all the opposite reasons. God, my family, my friends, my external strength will get me through this time, next time and always.

In Memory of Mike Hunsinger

Note: I have been writing, rewriting and reworking this blog for over a week. Tonight I realize its time to share. I am still missing so many thoughts, feelings, words. Perhaps that will come later. For now.....
In Memory of Mike Hunsinger -
Life is an journey. As we pass through we meet all types of people. Its a true blessing when we are lucky enough to meet the kind of person that impacts our lives, challenges and even changes the way we think or feel. The impact may be made over years and years, other times a person's gift in our life is delivered much different.
On February 22, a son, husband, father, friend, hot-rodder and mentor took his life. I find myself void of words to express my feelings. My heart breaks for those that were blessed to call Mike family or friend. Their loss is not one that can be measured. He had so many amazing relationships that withstood the test of time. I can't begin to imagine the loss and emptiness they are experiencing.
We met Mike and Darlene through mutual friends that had been friends. We had met briefly numerous times over the years, parties, events, etc.  My first real experience with Mike was one evening about two and a half years ago. Mike and Dennis came over to the house to drop off dinner. I was not doing so well physically or emotionally that night. Recent surgery, pain, fear, overwhelmed.... Things were taking their toll for the moment. Honestly, when I saw Dennis wasn't alone I thought "Really Dennis, not tonight I look as horrible as I feel. How uncomfortable a situation with someone I don't know well."  My attitude was immediately shattered by the joy, compassion, strength and love that Dennis and Mike brought through the door. It was just what I needed. They instantly had me smiling, laughing, and feeling a strength I so badly needed.
From that day on, Mike became a quick friend. He was concerned about my health, concerned about how Brett was doing. He would make sure to check on us often, a quick visit with Brett around the office, a myriad of questions about my latest doctor's appointment.s and of course car talk. Always offering a hug, assistance  and uplifting words. Brett came home just about weekly with a message  "Mike says he is praying for you."
Mike and my Brett shared a love for classic cars. They became fast friends. Mike was a true old school hot rodder - eager to share everything he knew with the younger generation. His love and passion for the hobby was contagious. I admired the time he spent with his son, teaching him the art of building, showing, hot rodding. He did the same with club members, newbies in the hobby and everyone in between. Mike's love of cars was always evident. He used his passion to host and organize Toys for Tots drives every year as well as helping numerous other charities raise money. He was a man with a big heart.
The last time I saw Mike was just a few weeks ago, appropriately at a car show raising money for the Ridgecrest Regional Hospital Foundation. I was not feeling well and was very late arriving. It had been one frustrating morning. I enjoy dressing pinup for car shows. It's my part of the hobby. My tremor was fierce - I couldn't get my hair fixed - dropped the curling iron repeatedly and eyeliner, mascara, lipstick were out of the question. I couldn't even balance on heels for that matter! (For those that don't know me - heels are my staple! I always have crazy, high heels on. Its my thing) I felt defeated, not to mention terribly sore and uncomfortable from the constant muscle spasms. I was felt like I was quickly losing me.
Unbeknownst to me, Brett had shared my frustrations with Mike, and just moments after I got there I was getting that compassionate hug I had come to know along with words of concern and encouragement.
For some reason, I have spent days trying to recall his words only to realize the exact words aren't particularly important, it was more the meaning. In his hug and words, I realized that being there with friends was more important than all my superficial concerns about my hair, makeup, shoes. Time spent with those we care about is what matters. He changed my entire outlook instantly. Not only did he change the course of my day but my mindset when it comes to the challenges I face each day in this new life I am learning to live.
Tonight we attended the viewing. For me one step in saying good bye. Honestly, I hadn't realized how much seeing him one last time would mean to me. Before we got there I had mixed feelings about an open casket. Mike's soul was long gone, he is in a place of happiness and peace - pain free. Seeing him peaceful was healing. It gave me the chance to say thank you and good bye.
I will never know what Mike was experiencing or why he ended his life.  I don't need to know. I do have moments where I wish I had known that he also was struggling, that he was hurting. I wish I had told him what an impact he had made in my life. I wish that just once I could have given him just a piece of what he gave to me.
In moving forward, I do know that the impact he made on my life was small compared to those that had the benefit of decades of friendship with him.
I pray that I can be the positive force in the lives of others that Mike was. I challenge myself to continue the love that Mike shared. Most importantly, remember everyone is struggling. Let those that impact my life know what they mean to me.
Mike - I thank the Lord that you came into my life even though it was only for a short time. I am still shocked at how hard this has hit me that you are gone. I do know that despite all the tears and pain, I wouldn't give back the opportunity to have you in our lives. I thank you for being what I needed. I thank you for helping me see what is truly important.  I will never forget your friendship, compassion, empathy and strength. I am so sorry that you were in such despair. I only wish you could have known how much you were loved before you left us. God bless you.