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.