Back in the hospital Aug 16

Given the past 24 hrs I am so glad that I am back on an inpatient status again at Cedar.

I had a seizure yesterday afternoon about 3:00. another hit hard maybe 1030. The only blessing of the drug from hell Diastat- which we used our second and last one. Maybe it would work better than the injections. It proved my previous theory - suppositories make terrible medication during a tonic clonic seizure. I will spare the details.

The next morning brought another of the same and the call to the doctor. Of course even the call was a challenge. Verizon Wireless had cutoff signal to town. We went to my grandmothers who thankfully still has a landline and at&t tracphone and we got through to the doctor who said come now and go straight to the ER.

I was put right into the ER with just minimal processing. I had recently had a seizure and had no speech. Everyone was so kind.

Unfortunately they were beyond full and I was stuck on a gurney in the hall even while suffered yet a fourth seizure in front of all to witness. Quite the show. Luckily IV ativan has about 10 minutes to work. I still lost language for quite a while leaving me very frustrated trying to share my intense pain. Finally as I was preparing to be admitted my doctor noticed and gave me a WOWbdosebof duiladuid.

Status Saturday 25 Aug

This will be very short and honesr. Worst day yet this stay. I was roughly scheduled to leave today yet stay nearby. I was singing toes in the water ass in the sand to myself enjoying "free" coffee (decF, nonfat splenda) with my mom who had spent a very long night with a very worked up yours truly. How would I be released if I can't walk 20 feet without a seizure. Weird aura, weird start to seizure not my norm along with computer/pharmacy issues I ended up with a visit by rapid response team (Detail sparred). 6 mg of ativan and no clue on morphine - God is good. Brett and Sean were here and I was starving. Long much needed cuddle with my tiny 5'8" + baby and i was better.

I ended as of 11:15 pm with 3 seizures. 50, 25 and 20 minutes. I know they want me gone soon and I wonder how it will work. God, family and friends will guide me daily.

I am falling asleep - Goodnight all and thank you.

Day 5 Hospital 2012

For those that may not be aware my news temporary address is Cedar Sinai room 4109. Like said its been 5 days, 5 IVs (apparently my body is rejecting them) which considering IV is to stop seizure or stop pain I am annoyed. The nurses are discussing starting a Picc line to result in fewer problems.

My seizure meds are still being fiddled with. I also have noticed that pain is a trigger which we are addressing unfortunately for me that is via morphine which is a very temporary solution.

I am going to apologize here bc writing this isn't easy. I feel it is very important so please understand my errors and mistakes.

I have a new internist- Dr Wool. His intelligence,  excitement and intrigue for what he does shocks me each day.  He has called in a team of rheumatologists that are certain I have an autoimmune disorder. No this isn't new. We have heard and played it before. One thought is it it flares and tests will show better now than during a non-flare. So we did a lumbar puncture twice. I have officially experienced the most painful experience of my life. Part of the results are back and all we have learned is I failed to be vaccinated against Hep B (or it wore out) lots still pending. I would have happily gotten the damn vaccine vs the test for future reference. I have never been one to scream during intense pain - quite opposite. Very quiet cry am internalize. Its been I think two days and I am humiliated at my level of volume, pain and telling the doctor to quit midway. Instead he ignored my rants and did punctured again. I never doubted the spine held all nerve endings- you wouldn't believe the place it incited level 20 on a 10 being the highest pain level possible. Evil!

Last night I had an MRA to check the varying vessels in my neck and brain - with the help of contrast. After they were so generous to share the images. What am amazing view of my own body.

I am starting to experience strong pain so for now that's good bye. Please feel free to comment here, facebook or text. I miss he so much but not soon.

I am dedicating this to Heather Edwards. This past week she was lost after giving birth. I wish had told her that her strength and kindness during a very difficult time kept me at work smiling. It was the beginning of this illness - I had knives coming from all directions. I consider myself blessed. I know being a mother was her dream. I will never understand. I know God is with her husband, baby, family and friends. Please pray for them.

Admitted at Cedars

After my seizures progressively worsening - I was admitted to Cedars Sinai. Yet again MRI and an EEG as well as blood tests. I had the requested CT Scan done at RRH this past week. As if now Ibhsbe nkbg? I am averaging 4-5 seizures each day for unknown reasons. As of now, Friday morning, nothing  has been done to stop or reduce them. I am being given Ativan IVP along with soma and morphine for pain.
Just going to keep it this short. With meds and confusion its so hard to write. I am constantly correcting and fixing myself. I realize that it isn't just meds- my brain is just plain struggling.
I have great nurses. Day nurses are enjoyable and for the most part enjoyable. One today was scared of my seizures. They are just different. The Stafford  the past two nights I have begged to stay - i.e. cancel flights everything. She offered to hide me in her suitcase. That would be Jennifer the RN from Canada. She is so much fun its just unreal. She is strong and understanding during  seizures. The Clinical Partner Adele is rough around the edges and a former poster worker. I couldn't be more blessed by both the care I am getting but the love and personality- and laughter they bring.
Ok my brain is hurting not good. Off I go for no. i don't have any news to report. Hugs.

Freak, Weirdo, Monster Epileptic- What's Your Label

The power of a word, the power of an illness is something few in our society understand first hand.
As I live each day my goal and very strong feeling is I AM NOT EMBARRASSED. If I was embarrassed I would go NO WHERE except doctor appointments. I go to BBQs, dinner, shopping, birthday parties, grocery shopping, pedicure with a friend, kids events and so much more. I only miss if I am at a doctor appointment OR I am literally incoherent after an event. Give me 40-60 minutes and I am there! Sometimes I maybe feel unsure or uncomfortable - what if I have a seizure here. This maybe a year old but there are events where it still is new. I take a minute maybe discuss it with someone with me and then just move on.
Everyone doesn't feel like I do. Some people are absolutely amazing and don't seem to be phased a bit. There is another group that is honest straight up and says OK explain this too me, ask questions and learn the process. The last group comes across as terrified- either straight up to my face or round about.
I have spent years doing things to show others that I am not "normal". I have had various piercings, I have gotten tattoos, worn my hair different. My clothes are rarely the typical runway fashions that year. I have never had much trouble speaking out for my beliefs- popular or not. All things that put you in a "different" group.
My newest group and label EPILEPSY has brought out emotions and fear from people that somewhat surprises me. I know it's scary. I have said Epilepsy was one of my greatest fears. After the past two weeks I feel like a Monster. A real life tried and true monster. Before you feel bad,  stop. I would be lying if I said I liked it- BUT what do you think is an underlying message of the tattoo culture, pinup world, especially the fame and fortune of vampire and werewolf books - even the summer hit Shades of Grey. All the listed are things I admit to love and enjoy. All include monsters, freaks, weirdos, whatever.
I have a list of tattoos I have really wanted badly. I have dreamed of one for years. I haven't understood and actually quickly disliked its popularity so I dimissed it. It's a sugar skull. Their meaning had no obvious connection to me. After the past year/week or so, I looked at a hand painted sugar skull I received as a gift from Brett many years ago. The vision I have had of the skull, flowers, anger, happiness and health I realized is my visual of epilepsy. The image I have seen for years, talked about. I didn't understand it and refused to use the image until she meant something and spoke to me. She is terrifying to the undiscerning eye yet when you look deeper yes there is torment (illness) shrouded in wonderful beauty (love, friendship, kindness and wisdom).
We miss out on so many things watching our own thunderstorms and basking in our own glory. Don't wait to find out what your Monster is- love it, embrace and make her your beautiful. Those important will embrace her no matter how scary she is because her strength will shine through.

My Epileptic Day- How does it sound?

Ok. I just finished a seizure about 30+ mins ago my speecj is still gone anf I am really f6ying hard to not sqre2 uup my wordß. I thinl people want t9 kñow goow i funxionafte4.
This one happemed bc 7 got to hot i think.i wàspicking u0 and all the suddem breath waa bsf likevdog pamti g. Laid dowm bret5 got shot and held on to mr. We were Hobbs video becausr it wld answer lots of questions. Brett was so busy holdomg me still it didn't happen.
So I am going to try to translate what I said above. OK. I just finished a seizure about 30 + minutes ago. My speech is still hone and I am trying really hard not to screw up my words. I think people want to know good how I function after.
This one happened because I got too hot I think. I was picking up and all the sudden breath was bad like a dog panting. Laid down before Brett got shot and held on to me. We were going to video because it would answer lots of questions.  Brett was so busy holding me down it didn't happen.
The above was after my second seizure today. I am typing all of this about 3 hrs after it ended.
My first episode was odd. I woke up used the bathroom and for some reason didn't return to bed. I jammed between my big and middle toe very hard on something unknown. I am not sure what I hit it on however I was near the refrigerator and thought last time this meant seizure. I did an ativan injection and sure enough. Luckily once it was over I went back to sleep a few hours. My left food and leg- not really sure what hurts. My quad muscle is sore but the ankle is very tender as are the toes.
My struggle for now. I have increased the Keppra to 1000mg 2x a day this morning. Brett needs to work this week. My son goes back to school. What do I do now? I can't be alone. It's to dangerous. Its overwhelming to think I need a babysitter, and one that can not just watch me but is strong enough and willing to do what's necessary.
I need to get a paycheck coming in. My prescriptions alone require that I have some money coming in. I feel like my brain is shut off or fuzzy all the time- side effects yet again. My body hurts. There is no other way to say it. Too many seizures too close together and it all hurts. I am worried I have injured my ankle but hopeful no swelling is a good thing.
This is epilepsy for me today. Confused, concerned, lost, hurting.... not feeling easy today.

Strength and Love

I am never surprised by the strength and love that friends provide. They all serve different rolls and do very different thing - in the end filling my heart so full. I sat at a birthday party tonight and watched a small section of our friends wondering - how did I get so blessed. It amazes me how God provides.
One challenge when I look at my life is how does Brett continue to work and maintain his life and sanity despite my epilepsy. As I have said he is always the first one here for me, the last and everything in between. I know he must keep some independence.
I have gotten friends to help with little (and ladies understand important) hair appointments. I am blessed that my hairdresser is one of my dearest friends. She does everything to not only accommodate but keep me feeling like myself no matter the barriers.
Yesterday I spent the day with a friend that has witnessed my seizures repeatedly - understanding exactly what I do and how to handle it. My hope was despite a seizure Brett could stay at work. Unfortunately, I had one but all went smooth. As soon as Brett heard he came and got me - worried of course. It was very hard to experience the seizure with someone else but I got through. One challenge time will get us through.
That seizure was different - I remember most of it, I know how long it lasted, how long speech was gone- but afterwards I was very confused. I remember Brett getting me ice cream and eating it- this is something I often want after episodes. I don't remember where we went, I don't remember coming home, I don't remember changing or why I did. Luckily Brett identified my confusion and cancelled our dinner date as I wouldn't have been very fun. I went to sleep at some point until Brett woke me up with dinner made.
Today a friend and I went to breakfast while Brett knocked out a big hike. Something dawned on me after breakfast, the diagnosis of epilepsy has made some changes that are very important. I have had seizures now for a year. That part isn't different, only the name is. All of the sudden people feel either more comfortable or responsible to ask how to handle me if I have a seizure. Lots of questions about how they look, what is expected, who does the ativan shot and where? How long will it last? I will have to write an entire other blog answering those questions.
The opposite reaction I have gotten is oh so and so had epilepsy and has forever is fine and you will be too. No worries type approach, comfort with the disease and what it entails.
I see every response I get as valuable. I appreciate that I am safe enough for folks to ask questions and be honest with. I know that as I began writing on Tuesday I wasn't ready for that yet. I am moving through the process. Sometimes maybe I am stronger than others, even though it's a year old to me "EPILEPSY" still sounds brand new. Ordering my med alert bracelet was a real reality that things have changed.
Tonight Kate told me- keep writing whenever you can. A few months ago Nancy told me the same thing. She personally found it so healing when she went through hell. I didn't ignore Nancy, I was a loss for words. It was confusing, scary and physically difficult to do it. Now I understand why, hopefully that will make writing in the future easier.
I close with a happy birthday to Misty - such a beautiful soul. It was wonderful to see you! Darlene thank you for having us. I love your music and only wish the lightening hadn't interrupted our visit.

Officially Diagnosed - Epilepsy

It's funny how life works isn't it. My entire life I had one overwhelming fear- seizures, Epilepsy. No reason, no cause just remember seeing one on TV and having the strongest fear to it I ever had to anything. Now I am officially a diagnosed confirmed epileptic.
A week ago if you had asked, " How would you feel if the doctor says you have epilepsy". My answer would have been- ecstatic! It would prove that those other doctors were idiots, close minded and ignored the obvious. I would finally have a name for the demon and I will be truly able to fight the enemy. Yesterday as the words came out of the neurologist/epilepologist I felt the burning of tears, fear, defeat and disappointment.
After a day or so of thinking, I realized that I knew that it was epilepsy deep down all along, however, I held out hope that we were going to find something that would be fixable. A medicine I could take and they would become a distant memory. As ridiculous as that sounds especially now - that's what my heart wanted.
The last few days have included so many tears, yelling, talking; and texting. I am humbled by the reactions, love and strength from old and new friends near and far. I must say my longest friends have literally held me up with their word late into last night and today on the phone. Friendships that last 25-30 yrs are amazing. They know just the right words, how I am feeling and reacting even why better than I do. I know that life has sent them far away but the miles have been erased through this. Friendship is what keeps me standing and breathing on these days. I can never find the right words to say thank you to everyone. My kids who stopped their lives to truly check on me, understand, help during seizures. I am always shocked at their acceptance, understanding and love.
The past week has been physically and emotionally challenging. Last Monday I experienced one of the worst seizures in a year. My 15 year old son was an amazing responder. I was risking breaking my ankle and he got pillows placed. He held my arm and nails at a distance when I uncontrollably attempted to give myself a black eye the claw a hole in my face. He kept a sense of humor the entire time and didn't complain once.
Since, in a now 9 day period I have had 6 seizures. One an 18 hr Partial that was very confusing.  As always my husband is my number one advocate. He has been home with me driving me to appointments and very of my conscious and logic levels - which seem pretty out there sometimes.
One major challenge I have been having is typing/spelling. If the phone didn't tell me every other word is wrong with that nice red line and suggestions- I would be none the wiser I have noticed. Even with the red lines I can tell notjjing is spelled wrong but I am not sure what neese to be fozed.
Yes those mistakes were intentional. I want to show how often in just one sentence I am re-writing constantly. When I am pre-seizure my ability to even fix it is impossible- turns into a great code between Brett and I. That all said I apologize now for any unintentional spelling and grammar issues.
As for me, I haven't been able to worm for the obvious reasons but also not so obvious like the computer screen flashes and I am out for the count. I have been trying to get more leave donated but so far been unsuccessful. The doctor thus far hasn't been convinced to let me work solely because I need income- especially after finding out my two anti-epileptic drugs AED's are $245 per month not including my other four monthly medications. So much for our amazing insurance. Apparently breakthrough seizures with generics are perfectly acceptable including the brain damage that happens every time.
My other news on Monday was that I have hat appears to be a femoral hernia caused by the violent nature of my seizures. My CT scan has been done, now waiting on the results and permission from Cedars to repair that as well as a damaged scar from early last summer that is causing some issues.
One closing remark is a little piece of me is angrier than ever at the doctors that used the diagnosis "psychosomatic" after merely speaking to me foe moments - assuming that based on my one page medical history it must be from getting married and having kids early. I understand doctors do NOT have all the answers- especially when we are talking about the brain. Learn how to swallow your pride and make a referral or admit you aren't sure what's happening.
I will try to post again soon. Please understand for now it is not easy and quite time-consuming. My brain is quite tired and sore from the effort. Hopefully this will improve over the next month and new meds.

Jerry's Famous Deli - Oh and Neurology and Rheumetology

So I have done the FUN update and I guess its time for the health update. I saw the neurologist and a rheumetologist on Monday down at Cedar Sinai. Forgive me if this is a bit blunt, I guess these updates seem to be getting quite mundane and old. I wonder if anyone really cares to read them.
Brett was amazing as usual I was in pain and struggling with nausea so early in the drive I climbed into the back seat, laid down and was out (thank God). I woke up somewhere near Hollywood Blvd. - just a couple blocks from the neurologists office. For the first time ever I think - we were early and the dr was running late. When we sat down I went through my normal journal that I keep. As of the visit I am averaging one seizure every three days. Not easy on the body and not so great on the brain. The discussion went back to EEGs being normal. The Dr suggested and seemed to strongly consider re-hospitalizing me and hooking me up to the standard EEG as well as putting electrodes or whatever they are up my nose and into my ears (allowing them to read electric activity deeper in my brain than the surface EEG allows. He mentioned we would have to simply wait for me to have an episode or two so it would be some time. ( NOTE they average 1 every 3 days they actually happen in clusters i.e. nothing for a week then 2 in 3 days.) I have gone 2 weeks within this average before having a cluster. So hospital time sounds just glorious oh and basically no matter the results they would basically try anti-epileptic medication in the end anyway. Sooo...Brett and he deduced that we should just try the meds. On Tuesday, I started 200 mg per day of Tegretol twice per day. Warned many times of the toxicity of anti-epileptics I wasn't really sure what to expect but....so far not terrible. Some slight nausea, dizziness, slurred speech, don't walk straight, but all of these I have sometimes anyway so who knows if its the meds? I should note I also doubled my klonopin 2 weeks ago and I am taking 750mg of Robaxin 2x a day (not just as needed)
I did have an odd experience Tuesday morning (before starting the new meds) I was up and getting myself together a bit when walking out of the bathroom and without warning, I seem to have blacked out, came to sitting on the floor in my bedroom phone still in hand, and a Payton (my boxer for those who don't know) on the majority of my lap. I cut my left outside knuckle somehow in the process and have a few new bruises on my legs but otherwise I am fine. I immediately got in touch with Brett who rushed home to watch me the rest of the day. My speech and gait were altered for a few hours after and my mood was quite irritable the remainder of the day. Otherwise, I seemed fine. All after symptoms are common for me both prior to and following seizure activity. I'm not sure what to think of the experience.
My other adventure Monday, besides eating at Jerry's Famous Deli for the first time. Just too bad they are right next door to the rheumetologist.....YUMMY is all I will say. We saw Dr. V and his PA Cori. Amazing people - just from the start. They were caring, interested and you could just see the wheels turning. They spent well over an hour collecting history, then was the exam and lab work. Dr. V was very honest - he doesn't see any outward obvious signs of an autoimmune disorder. He did all the blood work because there is reason to question. I will go back in for results in a couple of weeks.
At the same time I go down for results, we will meet with the neurologist again to follow-up on the new medication.
So, really aside from trying Jerry's Famous Deli - not a glamorous trip....nothing exciting to report. Today is day 7 without a seizure. I am hoping this trend continues. My body is just now starting to feel less pain and strain, although the fall added some. Praying this treatment works and I am back to me again soon.

Happy Anniversary lets Viva Las Vegas

Oh I have been so neglectful of my blogging. It has been a mixture of good and bad. I had a wonderful "break" from everything for six days. April 3 my husband and I celebrated our 18th wedding anniversary. I thank God each day that we are together. He has been my everything throughout my illness and my life. How many people are lucky enough to meet their soul mate at 14! Its been an exciting road, lots of love and hard work.

With encouragement from my doctors I was able to make our yearly trek to Vegas for the Viva Las Vegas Rockabilly Weekend 15. For those not familiar it is a weekend of wonderfulness everything - cars, clothes, burlesque pinups, tiki pool parties, beautiful women, friendly people from all over the globe, shopping and did I mention amazing cars including showing ours at the famous car show.

I met some amazing women by chance during the event. Women dealing with terrible illness, pain, weight gain as a result of all of the above. They were women of all shapes, sizes, backgrounds. They were from the US, Canada, England and Australia. I felt absolutely invigorated to share our stories just by chance as we wandered through vendors. It quickly didn't matter that I was heavier than I prefer or that I was missing bands, events and other things. I revelled in the relationships. I find myself wishing we had exchanged contact information.

Of course I have lots of health updates but for today, I am going to leave it here. With joy and happiness that was Viva Las Vegas Rockabilly Weekender 15. We have been posting pictures for those interested on facebook at Slo Joe Photography - feel free to check it out!

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.

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 ......

Spiritual Strength

Through this struggle I have spent so much time in self reflection. Learning more about mindfulness (something I had NEVER even heard of before last August) and really trying to strengthen my personal spiritual beliefs and relationship. The mindfulness part I am still working on - don't asked me for a definition off the top of my head just yet.
I consider myself a Christian. I believe that Jesus died for our sins. At them same time perhaps I am unique, I believe we can learn a lot from other spiritual beliefs. More than I can count I have been touched and lead to prayer and deep thought by teachings from the Dahli Lama and  Buddha just as examples. I am not party of a church. I have many personal reasons. Perhaps them easiest for me is that for me my spiritual journey and relationship with a higher power is mine. I choose to not feel required to follow a groups rules. That is a very personal decision for each individual.
God has provided me with support, strength, motivation, love and so much more from so many sources. It has been amazing. Coming out of the hospital in August he provided a  doctor who I truly credit with my life. He is of the Sikh religion. He is peaceful, smart, compassionate, empathetic, strong in ways no other doctor and few people I have ever met. He cares about his patients as a whole person. He immediately not only was treating me with traditional Western medicine but also a variety of time tested Eastern techniques including private yoga sessions to address my health issues (not fitness as we usually associate). Special types of breathing, transfer of relaxation so many amazing spiritual healing connections. I don't know them words to explain this blessed experience.
Acupuncture has been a massive part of not only my weekly treatment but instrumental in my current diagnosis, pain relief, nausea treatment, headache treatment, seizure treatment, emotional balance -  all limiting the number of medications I have had to take as well as allowing me to become more in touch with my body.
Through all of this I read a book by popular author Dr. Andrew Weill "Spontaneous Happiness". It did such an awesome job bringing so many of my personal experiences into words. He also has a book I learned about in the same book called "Spontaneous Healing". I am just starting to read this. I already can highly recommend both books. I'm not one for self help books and such, but given them challenges I have been facing I found his experiences and explanations inspiring and helpful in so many ways.
So how has this all affected me and my decisions, day to day living... one of my hardest struggles was how do I continue to work with all of these symptoms I am experiencing. The brain fog, slow cognitive function, tremors, severe fatigue, not to mention no longer being able to travel due to the seizures. The list felt never ending and overwhelming. I  prayed for guidance read scripture,  talked with my husband, family, friends, therapist. The guidance didn't touch my heart. I was really stressing. One evening as I was trying to relax and Brett was watching TV a wounded Marine came on, he said Sarah, you'll want to see this. I sat and watched a young Marine that had lost 3 of his four limbs. He proudly wore his uniform and was surrounded by his Marine brothers. As he spoke his pride and strength was undeniable. It wasn't a show for tv, he said he would go again knowing the end result. He had plans for life, he saw this not as the ends of his life but the beginning of a new adventure. In that moment my answer about work was crystal clear. He was my messenger. I will keep working. I will face my challenges head on. I will see this as a new adventure. My struggles are minimal compared to what he is facing AND he would do it again for our freedom, for the very life I am taking for granted.
I am working on remembering that precious lesson every moment of every day. Today I seemed to have lost sight of it. Tomorrow is another day. To all the wounded warriors that find the strength and motivation of the young man I saw that night - I know great things are coming your way. You are true heroes. And to that young man on TV that night - God Bless You!

One Step Forward, One Step Sideways

To quote a friend - my doctors appointment was Good News. One step forward, and one step sideways.  I think that is a very accurate account.

Now I am attempting to write this for the third time. Yesterday quite literally exhausted me. I fell asleep immediately when I got in bed last night and slept in. Started to write this afternoon and slept 4 hours. My body still feels so tired.

Tonight I am just miserable. I seem to be fighting a cold that my daughter brought home from work. I ended up suddenly feeling very odd (symptoms I have come to learn least occur without reason, its not the first time). Gastrointestinal unrest, irritable bladder, dry mouth, dry eyes,  tension in shoulders followed by this tingling feeling in my arm or arms, chest pain, heart racing and then yes the jerking of limbs and a myoclonic episode, seizure, or whatever the fuck it is.... To be followed by ativan. And 20 to  30 minutes some symptoms subside...

Yes, all the doctors are aware of my symptoms along with enough to fill 3 more blogs. So, where are we - the endocrinologist was good.  The adenoma (always benign) is 3 mm in size, or about 1/8 inch... Its not putting pressure on anything. He pointed out a number of concerns. He took a few good size vials of blood and Sunday to Monday I will be doing a 24 hour free cortisol urine test.  We really won't know much until late next week as to what is going on. The side step - he doesn' t believe seizues are related :(

I was scheduled to see a movement specialist at another large university hospital today. I was so frustrated not knowing if I should go - lucky a short phone call with his staff, provided that he would need this endocrine information first. Problem solved -

I am falling asleep again. More tomorrow. Love to all

The Big Day

Today is the big day. I see the endocrinologist and will begin to understand what having a pituitary adenoma truly means to me and the rest of my life. Yesterday, a friend and I met for lunch. Her mother, now 73 has lived with this condition for 30 years now. She shared many of her observations, her mothers experiences and challenges. In the end, her message was clearly that I will be fine. As with anything I have a lot to learn, my individual situation will likely be different in some minor ways, however over all, I will be able to live my life. What more can I ask for!

All that said, I honestly am terrified. I slept for about 90 minutes early, only to wake up about 10:30 pm wide awake, jerky, head, neck, back and pelvic pain as well as nausea - followed by a seizure at 1:45 am. The wind  blowing loudly, the dogs snoring, Payton tried getting in the trash, even caught Cleedus trying to get to something (no food in sight) off the counter. I was 100% on edge. I finally found a comfortable position on the recliner with my favorite down comforter and my special Snuggie and slept for a couple hours. Fair to say I am totally stressed out.

Today feels life altering. What is this adenoma? Are we 100% sure that it is benign? How big is it? Does it require surgery? What are the risks of the surgery? Recovery? What about radiation? How do they determine what hormones are screwed up and how long until we can get things to start leveling out? What about seizures? Is this causing them for sure? If so, is it reversible? Is there any chance this has effected any organs i.e. heart, kidneys, liver, pancreas? I feel like I could write questions for hours. Not to mention I have a list of all my symptoms I have been compiling for 3 years now.

I have done deep breathing, I have prayed, I have gotten words of encouragement from loved ones and hugs from my daughter before I left town. I have snapped at my husbands good intentions for no reason. I have felt the sting of tears that aren't ready to fall. Now we spend a few hours in the car, head down to to the city (about 3 hours from home) to see the new specialist.

I will have a lot more answers tonight. Hopefully with the answers will become a level of peace. I will let you all know what I learn when I find the words.

Family and Friends

Family and friends are so integral in our journey through life. I have been thinking on this blog for a few days. Reflecting on how my relationships have impacted my individual journey specifically the past 2 yrs and 7 months that have been so directly focused on illness, struggle, fear, pain, and challenges. Out of all of these things that many would say are negative came experiences that have changed who I am forever. It has changed how I view relationships. with not only my friends but also family. Its changed priorities in my life. Its strengthen my relationship with God. All lessons that focus around one thing, we aren't in this life alone for a reason. I consider myself incredibly blessed not only with family but with such a wonderful diverse group of incredibly supportive friends. Each one has served a unique role during this adventure. I have come to value in a way words will never describe - the role each of them has played in supporting not only me but my husband and my kids as well.

Knowing now what exactly is wrong with me and understanding the effects hormones play in our moods, behavior, personality and choices I find myself in a difficult place. All of these wonderful people in my life have stepped in the best way they knew how to provide the most support possible. Family took major sacrifices out of love and concern. While in my heart I was always grateful for everything, I never questioned intentions or the love they had for me - I was on a hormonal roller coaster from hell speed up at times by severe pain, pain medication, fear, loss of my own health and role in life. In return, those closest to me felt first hand the internal nightmare I was living. I have questioned relationships, tested unconditional love, screamed, yelled, locked myself up securely from emotion. In other words, I have been down right ugly. Please don't mistake this as "blaming" the adenoma and hormones. Quite the opposite, I am saying this because it is something I take full responsibility for. They were my words, my actions, my behavior. At the same time, its important for me to discuss the reality - the very ugly reality of how this has affected me. There has been a lot of damage done, but at the same time it has been an opportunity for self-reflection. Many, many thousands of hours have been spent re-learning myself, my interactions and working to understand and repair relationships.

My biggest difficulty in all of this has been the affect it has had on my kids. I have three wonderful children, they were 17, 15 and 12 when this began. My ability to be a parent through so much of this has been taken away. Severe pain, heavy narcotics, multiple surgeries, anti-seizure medications, not to mention seizures - and the emotional toll that ALL of that took on me as it continued with no resolution, just something new, new doctor, new possible diagnosis, the hormone instability, mood swings. I find myself so angry that this simple MRI wasn't done years ago for one major reason - my kids didn't deserve all this. I missed so much of their lives that I can't ever replace. At the same time, I have been blessed with sisters and friends that were right there ready to do whatever I couldn't. They have always been a strong presence in their lives and in a time like this, I realize how truly lucky we all are to have relationships like this. They have endured the test of time, the roller coaster of life and in the end there is nothing I can ever do to express my gratitude.

There are other friends that have kept my husband sane through all of this. They not only would show up with dinners for what seemed like months, but they drop by hang out. I honestly don't even know all they do - but the emotional support, checking in, stopping by, getting us out for dinner and laughter. They are invaluable. He has taken on so much stress through all of this, I can't even begin to imagine how I would cope if the tables were turned. He is a rock, his love for me shines through in everything. I couldn't be more blessed. I thank God for him and those that give him strength when I can't.

In addition to all of these amazing people, are the friends who know to show up with a drink, dessert, lunch, whatever just to talk. The friends that although far away physically are right here with me on the phone or chat getting me through a rough day. The friends at work that are compassionate and understanding. The friends that seem to know when to check on me at just the right time. Obviously so many people fall into many of these categories. I can't begin to imagine going through this experience without even one of them.

Early Morning Reflections

Our Father who art in heaven, hallowed be thy name. Thy kingdom come, thy will be done on earth as it is in heaven. Give us this day our daily bread and forgive us our trespassers as we forgive those that have trespassed against us. Lead us not into temptation but deliver us from evil. For thine is the kingdom the power and the glory forever and ever Amen.
Since my phone call on Friday letting me know the reults of the MRI - I have been blessed by an outpouring of love and support that is nothing unusual from those close. Dinner, snacks, laughter, hugs, drinks, phone calls, offers to help all came pouring in. Although I have been facing debilitating health issues for 2.5 years - the response still surprises me.  I immediately feel the warm blanket of love, true friendship, close family.
Friday I texted a very small group of people. Making a phone call and telling someone at that moment was impossible. I was in a little bit of shock looking back. As it was I didn't even get through my intended list- despite even two more days of the weekend. I have felt fear, anger, sadness, fear, frustration, tears, shock, happy for a diagnosis, thankful that its better than some possibilities we've discussed. Millions of questions anxious to understand and symptoms to improve.
I logically know its fairly common - UCLA says @ 1 in 1000 people live with this condition. Physically my symptoms have generally been worse the past couple weeks. Any stress whatsoever always increases them - finding out I have a tumor in my brain area no matter what - adds some stress, aggregates the symptoms, which in turn scares me, You see the cycle.
After finding out, I began slowly sending a few texts explaining the test results. My unitial thought just tell those that knew I was having the test and waiting. I didn't quite get through everyone. Just hearing it - I was exhausted. I did some relaxation followed by a 2 hour nap. NOTE: VERY important lesson I have learned through this, everything is easier after some sleep or even just relaxation. I can handle sleep often proceeded  by deep relaxation breathing and repetition of The Lords Prayer in my mind. (your repitition or vizualization of peace must be your own).
I woke to a text from Renee that as we do and have done forever - she was bringing over appetizers, planned to try a new cocktail - a Gimlet and Happy Hour would commence shortly. She and Tia were soon followed by Joe, Tony and Correen. I set to work in the kitchen cooking - therapeutic and along the lines of the 1950s which we all enjoy. I made the dinner as planned for the evening. Salisbury Steak with mushroom gravy, mashed potatoes, peas and of course a Jello salad. Felt wonderful to feed everyone such a strong meal.
Saturday was quiet time with Brett  a visit with my grandma that I am so blessed to have here still. My body needed rest. It seemed to be flipping out!
 
Sunday was comforting old Marilyn Monroe movies, Joe, Rod, Candice and Boo brought dinner and we enjoyed laughter and good times followed by the Grammy's.
I was able to have so many great discussions with loved ones despite how I was feeling - social media options provided just what I needed.
Last night was a rough night physically and emotionally. I went to bed determined to take Sean to school and head into work for a few hours. Unfortunately, my body had other ideas and the jerking started early. Dry mouth, something I haven't talked about much but it was quite annoying last night. Nothing seemed to help. Nausea, Hot and sweaty - obviously my own heat wave when everyone else is wrapped up in quilts.
It is now almost 7 am. I had ativan about 4 am, dozed off and on about an hour all night. I have recited the Lord's Prayer maybe 100s of times over the last night. It helps me refocus, relax, accept the changes of my day. God has truely blessed me! I am so thankful for his peace and direction as I move through this challenge. He has blessed me with a husband, kids, family and friends that couldn't be better. I'm learning that my expectations aren't important. I just need to be comfortable.
We shall see how this day will go. I give my expectations up and will relax.
Thank you all that have been so wonderful throughout this journey!

What have I experienced - Pituitary Adenoma

I had a few folks ask for clarification yesterday after my blog.  I have a confirmed pituitary adenoma. For now it is assumed this is the source of my health issues. I believe that this has been the source for quite sometime now. I can actually look back to health issues nearly 8 or 9 years ago and wonder if perhaps this goes back that far. I had a myriad of symptoms and the doctor was positive that I had an adrenal problem. The tests were negative, however, my pituitary was never checked.

I try to find a balance educating myself about a diagnosis online. I personally need to have information to feel at ease. The unknown totally freaks me out. I am cautious to look at sites such as Cedar Sinai (recommended by my physician), UCLA, John Hopkins. All provide some very good information on the condition and it's variety of concerns, effects, treatments, etc. It's helped me to understand why I have some of the symptoms I have experienced for SO LONG!!!

Just a basic "list" - diarrhea, nausea, racing heart rate (I've been told this was anxiety, but I didn't feel anxious just like my heart was beating out of my chest), mood swings, headaches, problems with my periods I don't even know how to detail - I ended up having a partial hysterectomy to "stop" part of those symptoms...myoclonic seizures, essential tremors, loss of balance, dropping things (same hand as tremor), unbearable joint pain, muscle weakness, bruising, hair loss (hand fulls), acne - quite odd in nature really, facial sinus pressure, insomnia, fatigue. Any attempt to exercise - I mean walking slowly for 10 minutes I would be so sore no amount of muscle relaxers, narcotics, anti-inflammatories would treat the pain for a couple of days. Pain so intense I can't sleep. Heat intolerance (sweat like crazy if it's the SLIGHTEST bit warm), cold intolerance...the past two days I have been melting. I prefer the cold intolerance. I can always seem to get warmer.

I'm not saying any of this to complain or for sympathy. I want to be clear on that. My whole purpose of this blog is to educate, help others dealing with the same thing really. I started this process and I looked and looked. Finding something, someone experiencing anything like I was - I never found it. It is so frustrating and so lonely to go through an illness - undiagnosed and without anyone that is or has experienced what you are going through.

I started today's blog - I was going to talk about dealing with the diagnosis. I am a bit focused on the physical symptoms right now. My symptoms the past week have been yuck. I feel rotten. As has gotten so common, it is affecting my ability to function even simple tasks - cleaning around the house, work, interactions with family and friends. The last few days the gastrointestinal symptoms have been awful. The headache and pressure strong, as well as the muscle and joint pain. Last night my heart rate was crazy and as usual lead to a myoclonic seizure and ativan injection.

My emotional reaction is all over the place. I guess in time I'll get better in touch with that and how I'm feeling. I'm not really sure how to put it all into words quite yet. I'll get there... Maybe next time? Till then, please feel free to ask questions or comment, what not. I'm open.

Back to Blogging

I have been gone from blogging for far too long. I will go into some of my reasons and explain where I am now. I just logged into this, considering blogging again, not really sure if I was comfortable doing it again. I looked at my stats and realized I have had over 3,000 views on my page. That right there answers my question. There is an interest in what I've written, what I've had to say.

When I started this blog about myoclonus I didn't understand what I was going to face. In October I had gotten a glimpse of the ugly side of doctors. I had a couple months of the miserable physical symptoms associated with the disorder. The intensity of my situation the first months was massive. That definitely changed over time luckily. Also to be considered was the effects this had on me, my marriage, my immediate family, extended family, friendships and career.

Obviously, there isn't time today to go into all of that and I will try to spend more time on it as I can in upcoming blogs. First, I need to address why I stopped blogging. I think in one word I would say confusion. I was getting such mixed signals from doctors that I was confused at the cause, frustrated with everything I was experiencing. Some doctors said “we don’t know”. Other doctors told me it was the result of medications that I had been on. The last doctor I saw (when I stopped blogging), a "movement specialist" told me after a short visit that I had conversion disorder. His "logic" was that because I had a miscarriage at one point followed many years later by a fairly urgent hysterectomy at a young age that I hadn't properly dealt with these emotions and my body thus was converting them into physical symptoms. He diagnosed this by giving me a shot of B-12 vice the typical Ativan injection during a myoclonic episode. The episode passed and thus his diagnosis. The treatment - psycho-therapy.

Deep down I had a very difficult time with this diagnosis for so many reasons I can't even begin to list them all here. I already was seeing a therapist (just to try to learn to cope with everything I was experiencing). We delved into this theory. My therapist, neurologist, a psychologist, acupuncturist all felt this was ludicrous. There were too many physical symptoms. After the B-12 injection (I found out months later it was B-12 vs saline) and months on various medications I seemed to find a balance of sorts and was doing OK for a couple of months. I seemed to be improving. I was still struggling with some pain issues however the seizures had stopped, I was sleeping somewhat better, I was back to work for about six weeks.

The first week in December, I donated blood. Almost immediately I felt awful. It was the first time I had ever donated blood before. I figured this was fairly normal. Within 24 hours, I had my first myoclonic episode again. After this, I began struggling with tremors. The tremors were right side predominate and over time increased. The seizures became more frequent. Headaches, extreme fatigue, pain everywhere, insomnia, nausea, balance issues, right hand just dropping things and mood swings for sure. The lack of sleep, pain and tremors definitely lead to problems with depression. Its hard to stay upbeat despite all the efforts when you aren’t sleeping and everything hurts all the time – and NO ONE knows WHY….

Doing some research I found something online about B-12 helping to treat myoclonus. I was LIVID that I was given something known to treat myoclonus but told it was psychiatric. At this point, my husband and I made the connection of the previous injection. We attempted this treatment again. Some slight benefits but really very little. We also have tried klonopin for the tremors and sleep (which helps some), topamax (horrible side effects, only treated headaches), ibuprophen around the clock for pain, norco for pain, robaxin. Some short term help and that’s about it. There was discussion about endocrine system disorders, heavy metal poisoning – neurology seemed to be cut out of the picture.

This Thursday I had a series of MRI’s. My neurologist had dug through the mass of medical records and identified a number of tests that hadn’t been done during my hospitalization. I was referred to an endocrinologist. But in the meantime, the neurologist scheduled a follow-up EEG which came back normal, as well as MRI’s of my neck, brain and pituitary gland (the latter two with and without contrast). Friday about 11:30 a.m. the neurologist called to let me know that the MRI showed a pituitary adenoma. He had already consulted with an endocrinologist regarding my medical history and current test results. The endocrinologist’s office called during my conversation with the neurologist to schedule an appointment immediately.

Next Thursday, I will see the endocrinologist and learn more about this newest test result. I am dealing with a lot of emotions right now. Initially I am scared and angry! I know we specifically asked doctors about the pituitary gland at the beginning of this nightmare. We were told for some reason or another that wasn’t possible. I was under the belief that I had been tested for it. They may or may not have done a blood test of some kind. Now that I have had the right kind of MRI to test for it – I KNOW they never looked for it on an MRI before. How dare they do this? I don’t understand how the HELL I spent an entire month in the hospital and NO ONE ever found this? If I had seizure activity – endocrine disorders are a major cause. WHY did they spend a ridiculous amount of time doing psychiatric exams – which I PASSED, every neurological test, along with a million other things – but they NEVER called in an endocrinologist? Seriously? How does this happen? I can think back to almost 7 years ago when I began having symptoms that lean toward endocrine disorders. Every time a different doctor told me it was nothing or it was psychological – I needed a hysterectomy…the list is never ending.

I am scared. I have a “tumor” in my brain area. Yes it is almost ALWAYS benign. There is a chance of surgery to remove it. There is hormone therapy. There is a chance of radiation therapy. I didn’t ask how big the adenoma is… There are a lot of questions, more than I can verbalize yet. In time those questions will come.