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.

Making Adjustments due to Chronic Illness

One of the major things I am still working on is how do I address  my physical challenges in my day to day life. My symptoms have varied over the course of the past few years and it seems as though just as I think I know what may work something changes.

Perhaps the most consistent challenge throughout has been learning that I simply can't plan things. My body is inconsistent and no matter how hard I try, I can't predict how I will feel day to day much less hour to hour. My physical condition limits basic functions like driving, making meals, basic cleaning up, even shaving my legs, fixing my hair or applying makeup. I am unable to make even short term social or work commitments more than with a tentative response.

I love cooking, vintage clothing, thrift shopping, pinup modeling, rockabilly events, swing dancing and running. The first thing I lost was running - when this began I was running 3-5 miles 5 days a week. Now just slowly walking for 10 minutes results in pain and exhaustion. My weight has sky rocketed, modeling is not an option at this time. The weight gain has also forced me to change how I dress for the time being.

Other things I have found much easier to work with. Cooking I depend on my crockpot, KitchenAide, a chopper, and cook when my tremors are calm and my energy is up. This way I enjoy the process of cooking still and dinner is usually ready early which relieves stress later if things get bad.

As far as going to events, parties, dinners, I am trying to learn that for now my body is in charge. Sometimes I am just not up to it. I think the hardest part of this is in the end when its a bad day - everyone either proceeds with plans and I am stuck bummed OR they cancel on my account. It seems like such a horrible situation regardless. Just no right answer. For me this is perhaps the biggest challenge. We do a lot of bbqs and casual dinners with friends at our house which is wonderful.

So today I pose a question to my readers. What adjustments have you had to make in order to cope with your chronic illness or perhaps a past illness our injury? What about adjustments to your hobbies and activities that you enjoy? Whats the hardest challenges?

Que Syrah Syrah

During my illness my parents gave me a great sign "Que Syrah Syrah" - "what will be will be". A reminder that my constant worrying doesn't change a thing! Perhaps I need it tattooed on my arm.

On Thursday as we sat in the waiting room at the endocrinologists office, I found myself a bundle of nerves. I was terrified of the unknown. Isn't that always what we fear the most?

A man came in late thirties early forties. He sat down and immediately began telling us how over many years his health had deteriorated and just two weeks prior he had a heart transplant. As he shared his experiences my mind wandered very quickly away from my own issues. Initially, I was thankful for the distraction. As he continued to talk I realized that while my situation has seemed so scary - I haven't required an organ transplant. He later mentioned briefly the thought that someone else lost their life to give him life. I could hear a struggle. Why was he given life over someone else?

We all have our challenges. This strangers story was unique and emotional to him. I know so many friends that have experienced their own challenges. Some resulting in wonderful success in the end, some diagnosed with chronic illness and pain that has forever changed their day to day life, a few that despite fighting the unimaginable have died far to young.

Mom, Jeanie, Carrie, Michealle, Nance, Lenny, Zach your strength and courage are my inspiration. Miah, Tammy and Gina you fought courageous battles and were taken so early from this earth.

In the end for all of us, what will be will be. We fight, we do our best to be strong, to maintain our improve our health. Ultimately, no matter your spiritual beliefs worrying isn't going to change the end result. Arguably, it may even make it worse. So, no matter your individual challenge today or tomorrow - remember - Que Syrah Syrah ......