Sunday, February 26, 2012

Beaten Down and Other Musings



Fall seven times, stand up eight. ~Japanese Proverb


I know "beaten down" seems like a depressing entry for a blog title. And I also know that it is difficult for some of the people in my life, either who read my blog or follow me on Facebook, to read an onslaught of negative thoughts about what is going on with my medical issues. Heck, it is hard for ME to be in my own head sometimes lately or even to read a lot of negative thoughts on Facebook pages such as the Sjogren's syndrome one that I follow. But I have promised myself to start being more honest in not only my writing, but also in my interactions with other people. So here we are. The thing is: when I write and am able to process my thoughts, my alter ego, the much stronger one also known as "the optimist" usually finds her way out. Bear with me.




Just as Chuck and I were starting to watch a movie at home last night, I leaned over to him and said "I just feel beaten down." I wasn't sure really what my problem was. My mood swings from the steroids had lessened just enough to make me think that I will make it through this course of treatment without continuing to cry or wanting to kill someone several times a day.



Not even joking about that one. I cannot believe people actually take that stuff for a non-medical reason!



But I had not been feeling like myself all day and feeling well, beaten down; maybe even overwhelmed from trying to process all the events of the past few weeks. After all, I had been diagnosed with two blood clots in my lungs, Guillain-Barre syndrome, and had a recent and exhausting trip to the emergency room just two days prior with severe head pain, nausea, and increased tremors. I was checked out for bleeding in my head and a blood clot to my brain which all turned out negative. On top of it, I was constantly trying to deal with insurance issues, disability issues, appointments, rude people on the other end of the phone, my computer crashing, getting what I needed medically from my health care team, the list goes on and on.




Chuck's response to this big revelation I had last night was that of course I felt beaten down, who wouldn't considering recent events in our lives as of late? He was not surprised by this at all. But I was. I am a fighter and I attack everything head on until I get to the other side. I know that. But as I thought about it some more, I realized that this feeling of being beaten down wasn't about wanting to give up but rather to acknowledge and accept (there's that word again!) where I am at during this given moment in time.



Physically my body is beaten down because it has been poked, prodded, and stuck with more needles in the past few weeks than it should ever have to see in its lifetime. It has endured countless sleepless nights and long days of appointments and tests. It is worn out. Worn out from behaving in a way it is not supposed to with its altered heart rates and blood pressures, tremors, weakness and, new pains that it is not used to. My body is trying, that is for sure. It is begging me to be good to it with the food I put in it and the care I give to the massive bruises and hematomas that litter my body from my legs to my belly to my arms. Sometimes I feel like it is screaming out to me to just stop all the invasiveness that the others inflict on it and just let it be. I want to do that; to let it be. But I tried to let my body do its own job and it could not.




My body wants to feel pretty again. Sure, I was never a supermodel to begin with and my body is actually a lot lighter than it used to be, but it does not feel pretty. It feels disfigured from the bruises and the rashes. From the hair that is starting to fall out from the steroids and the often pale, makeup less face that stares back at me in the mirror....the darkened eyes that used to be so much more vibrant. My body does not understand that it is an effort to get it clean every day right now and everything else is not as significant. Maybe that is where I go wrong because really, a little concealer is not that much effort is it? Even though I am angry at my body for betraying me so much lately, maybe seeing lighter eyes with less dark circles underneath them in the reflection of the mirror will make me less angry with my body for its obvious betrayal.

I love the Nathan's hot dog competition. At least I am not doing this to my body!!

Feeling beaten down is not just physical but emotional and mental as well. The act of processing a lot of events while trying to maintain some shred of normalcy, routine and self respect is difficult at best. It doesn't matter if it is related to having a chronic illness like I have or any other issues such as divorce, abuse, loss of a career, loss of a love, or loss of yourself. Fear of the unknown fills your head.




I will admit, I am scared. I am freaking scared to death. I don't think I fully realized how much until yesterday. I am afraid of what the results from another MRI will show this week. I am scared of going for a neurological procedure (EMG) that I know for a fact will be painful. I am scared of the results; whether they will be bad or whether there will be any results at all which could help define what exactly is going on and how we are going to take care of the problem.




I am scared because I know my body is not acting right and I fear that it will not get back to where it was even just two months ago. Will I ever be able to do an activity again for more than ten or fifteen minutes without needing to sit or lie down? Will I ever be able to stoop down again without falling over or needing help to get up? Will I ever be able to shower and wash my hair again without it being this epic event that exhausts me and makes me shake? I know since I have Sjogren's syndrome, my body will never exactly be the way it used to be, but will my body ever get back to where it was several months ago?




And as my fears consume me, I think back. To other difficult times and to all the other struggles and questions I had during those times. Maybe like we all do, I have learned from prior experiences. When I had a severe heart arrhythmia (before having surgery to correct it), I questioned if I could even get through a day without a heart episode. I questioned whether I could make it a month without an emergency room visit. When I had cancer in my mid-twenties, I questioned whether I was going be able to endure the treatments, if I was going to get married. I questioned whether or not I would live to see my twenty-fifth birthday.



All of those questions were answered. And I saw my twenty-fifth birthday, as well as my fortieth. I got through it.



So for now, I will accept the fact that it is all right to feel beaten down; to allow my body to go through that process. It means I am down, but I certainly not out.


I will have faith.
I will trust in God to see me through.



I was sitting in church this morning and looking around at the various people scattering the pews and wondering how many of them were feeling beaten down right at this moment? Or wondering how many of them had maybe felt beaten down at a different time in their lives? A time where some things did not make sense or that they felt they had endured more than their fair share of beatings so to speak. I don't have to know all of their stories to know that those stories are there in some form or another. Tales of survival. Tales of people who became stronger and more compassionate people because of what they had to endure . Journeys that were easier than mine and definitely journeys that were more difficult than mine.



People who were beaten down but yet rose up.

Again.

And again.

And again.



Just like I will.





























































































































Photos: Courtesy of Google Images

Wednesday, February 22, 2012

How Much Can One Spirit Take?


“Keep your face to the sun and you will never see the shadows.” ~ Helen Keller


"Placing one foot in front of the other, I've climbed to higher lengths. Reaching beyond my own limitations, to show my inner strength. No obstacle too hard for this warrior to overcome. I'm just a man on a mission, to prove my disability hasn't won." ~ Robert M. Hensel



This blog entry is intended to update friends, family, blog followers, and the general public about my recent health issues. I prefer to try and make my blog about different life experiences and topics rather than about my day to day medical sagas, but I received some excellent feedback last week about my blog entry entitled: From Medical Crisis to Inspiration. I was told that it was helpful to have a clear understanding of what is going on with me and I found it helpful because it fielded a lot of questions and concerns at a time when my energy and time is precious to me. Not that I don't want to talk about it in person, by e-mail, or on the phone; I do. But I also like to talk about other things going on in the world as well!


I went to see a neurologist yesterday afternoon because of some scary symptoms I have been having since maybe around Christmas/New Year's. They included sudden and severe pain in my entire legs and feet that felt both muscular and like someone was stabbing the bottoms of my feet. Very different than my typical joint pain from the Sjogren's syndrome. It was getting difficult to walk Molly and even the touch of the bed sheet on my feet could feel like agony. Burning, numbness, and tingling in my legs and feet were constant. I went to see my primary care doctor within 2 days of the symptoms starting and my small prednisone dose (steroid) that I was already on for the Sjogren's was drastically increased. It was thought that I had neurological involvement from the Sjogren's which seemed like a perfectly logical explanation to me. That's the thing about having an autoimmune disorder though, everyone blames that first, including myself.




I was about a week away from seeing my rheumatologist who treats the Sjogren's and although the steroids were helping the pain a bit, I started to have difficulty walking in regards to coordination and balance. I felt like I was drunk without the fun of actually being drunk. Severe weakness took over my lower half of my body and even getting up off the couch was an event. Then the weakness began in my arms and upper body and all of a sudden, driving, showering, and household chores became almost impossible. I was spending a lot of time in bed and began to wonder if I was just depressed from the steroids. But my body just did not feel right.



I saw my rheumatologist who ordered a brain MRI (which was negative), blood work and started me on IV steroid infusions since it appeared that the prednisone (oral steroid) was having some positive effect. She considered having me see a neurologist but wanted to do the MRI and one steroid infusion first. I got significantly better with my walking and pain after the first infusion so she scheduled three more and referred me to a neurologist as I was still having tremors in my arms and some weird stuff with reversing my letters and words when I typed and wrote.




I seemed to be improving with the next two steroid infusions neurologically but ran into complications with heart palpitations and two pulmonary embolism (potentially life threatening blood clots in the lungs). Things were getting complicated fast yet again. This past weekend I became very discouraged because despite tolerating my steroid infusion better, my hand tremors started to make it difficult to even get a fork to my mouth without slobbering food on my shirt. Utterly ridiculous. I also appeared to really be struggling with my energy and weakness at times although not as bad as weeks prior. But the good news was I was seeing the neurologist and it might be helpful for her to see me when I was symptomatic.




Off to the neurologist yesterday. I hate neurologists. I'm sorry but it is true. As a nurse and as a patient, I have never had a good experience with one. Until yesterday. Dr. Evelyn Gleeson at St. Francis Neurology is hands down one of the best doctors I have ever encountered in my life; and I have encountered many. She is not only brilliant, but compassionate as well. Immediately I was able to build a rapport with her.


My neurological exam, although not horrible, did turn up some interesting symptoms and a diagnosis that floored both me and my mother.



To begin with, she does think there is a possibility of a Sjogren's syndrome related neurological issue but does not think that was what happened to me over the past six weeks. She is also testing me for Lyme Disease and some vitamin deficiencies to cover some other diagnoses but then she hit me with what she really thought was going on.



She looked me straight in the eye and said she thought I had Guillain-Barre syndrome.



Excellent information and resource for Guillain-Barre if you are interested:  http://www.jsmarcussen.com/gbs/uk/overview.htm

And another: http://www.guillainbarresyndrome.net/


Neurology was never my strong suit as a nurse but what I did remember from my days as a pediatric nurse was kids with Guillain-Barre being transferred from my floor from the ICU after being on a ventilator due to paralysis of their entire body. Many recovered fully, some did not, some needed months of rehabilitation. Some never made it at all.


What....the...fuck?    (I get to say that this week, sorry).


So I tell her that how can that be? I got better with steroids for a while. She then went on to explain that Guillain-Barre (GB), which is an autoimmune disease, can be helped with two other treatments called IVIG or plasmaphoresis if it is treated in its acute stages, usually the first two weeks of symptoms.  However first of all, I missed THAT window of opportunity (we are guessing I am at about week six) and second, GB just has to run its course, usually being hospitalized with supportive care in order to keep the paralysis (or milder paralysis as in my case) from paralyzing your necessary organs that keep you alive, like your lungs. Steroids do not typically treat GB and it was most likely coincidence that the GB ran its course as it appeared the steroids were working.



Listening to her, doing some research, and looking back, I think she is right.The first page I pulled up on Google last night and there I was, all in black and white...my last six weeks or so. All the neurological signs, the heat palpitations, the blood clots, the choking episode I blew off on Super Bowl Sunday thinking that the gluten-free pizza crust was too dry for me, the subtle difficulties I was having with swallowing....all likely GB related.


So where does this leave me? I have to go for an EMG which will test my nerves and any damage from the GB and to check for Sjogren's related nerve issue which is still a possibility. An MRI of my neck and spinal cord as it appears there is concern about damage in that area which would account for my continued tremors and upper body weakness. Physical therapy for both the neurological issues and pulmonary embolism to help regain as much of my previous self as possible. Recovery from GB varies widely. There are different statistics wherever you look. Some say weeks, some say years, some people always have a deficit of some sort.


I say screw the statistics.....


As I have tried to process all of this information since leaving her office yesterday, I have so many thoughts. My first was to be angry at the fact that I DID seek out medical care when I first became so symptomatic and despite the fact that I was taken seriously, the diagnosis was missed. Maybe if I had gone to an ER instead of my regular doctors, maybe if I insisted on seeing a neurologist sooner. Maybe this, maybe that. Fact is, GB is a rare illness and it is not the first diagnosis you jump to when a patient presents with neurological signs, especially when they seem to improve on steroids.




More than being angry, I am grateful. I feel like a hand has reached out to me and brought me back from the brink...yet again. Despite the fact that I do not understand why these things keep happening to me, I am very well aware that in the past nine days, my outcomes could have been so much different. Despite being emotionally overwhelmed, I am humbled to be here.




Even though I have experienced a lot of self growth over the past two years or so, my life has gone through a significant, often painful, transition over these past six weeks in regards to my priorities, my personal life, and my relationships. Some people and situations I thought were certain and steadfast have turned out not to be while at other times, I have been taken aback by the generosity and compassion of people who were once strangers. I am learning the difference between friend and acquaintance. I am learning how to be less judgemental; despite the fact that I didn't think I was. Is this where my medical journey is supposed to take me? And is it supposed to be this difficult? I don't know.




What I do now for certain is that today is Wednesday, February 22, 2012. The sun is shining and I am certain that I am loved. I have necessary tasks I must take care of today to get further down this road. I must eat well, take medication, make appointments, relax, read, and heal. Oh yeah, and shower.



That is enough for today.

Saturday, February 18, 2012

The Eye of the Tiger: Guest Blog by Chuck Myers





It was perhaps a month ago that Chris asked me if I’d be interested in being a “guest blogger” on her site. Having a huge ego, I of course agreed, as her followers have grown exponentially this year! (Of course, I only agreed if I could post it without any edits, as well!) I’ve been tossing around a few ideas in my head since that time, but the events of the past few weeks have led me to settle on this one…



Tigers…they’ve fascinated me ever since before I can remember. A stuffed vinyl tiger was one of my first toys, and I still have it today (Thanks Mom!). They’re the animal I want to see when I visit a zoo, and I have one on my right arm. It’s one of my dreams to be able to actually touch one some day; just to feel the aura of an animal that some cultures believe has magical or supernatural powers.



If you look up tigers as a zodiac symbol, you’ll find a huge amount of information, and while the Internet can provide you with nearly as much misinformation as accurate information, there are some traits that are present on almost every site you find.



Tigers are somewhat unpredictable, passionate in their relationships, and capable of great generosity.  They are symbols of strength, tenacity, and bravery.



Chris is my tiger.



Certainly, she is sometimes unpredictable, and I think that’s a wonderful thing in a relationship. I don’t think there’s anything worse for a relationship than predictability.  Of course I believe that you need to be able to count on your partner, but knowing just what’s going to happen all of the time leads to the kind of ennui that will kill your relationship.



Passionate…Chris is passionate about everyone she connects with, and sometimes too much so.  It’s a wonderful thing for family, though, as well as for the projects and causes she takes on.



But it’s the strength, tenacity and bravery that really sing to me when I think of Christine.



It takes a lot of strength to not only face this autoimmune disorder she’s saddled with, but to fight it through any and all means available to her.  She has fought it (and continues to fight it) with traditional western medicine, and a plethora of physicians in all specialties.  She fights it with eastern medicine, and what many call alternative methods, such as acupuncture and massage. She fights it with what some people might call drastic dietary changes, exercise when possible, and adapting her lifestyle so that she can continue to be the person that she is.  It takes a strong person to hear “no” a thousand times, and persevere.  It takes strength not only to deal with the disorder, but the treatment.  It takes strength to fight the swings that the medications attempt to impose on your moods, so that you don’t hurt the ones you love.



Tenacity…You can’t even begin to doubt it in Chris.  It takes a tenacious personality to work their way through the medical system we have in this country, to try to find the right people to help you.  Five rheumatologists, three eye doctors, unknown numbers of primary care practitioners, ob-gyns, and emergency room physicians head the list. It takes long hours driving to Boston, Springfield, and Hartford to see the right people; people that might know something about this little-known disorder.



It takes tenacity to wade through the morass of bureaucracy that tries to keep you from getting the help you need, including insurance companies, health insurers, and state and federal agencies.



Bravery?  I haven’t met too many people who can outdo her in this department.  Through the myriad of symptoms, she keeps fighting to maintain her relationships, and to keep doing the things she deems important to keep her the person that she is.  The symptoms that appear she meets head on, and develops plans to deal with them.  She fights this thing with everything she’s got, and then some.



Then of course, there are the little things, like injecting herself in her abdomen.  I may be a lot bigger than she is, but she’s a lot braver!



Strength…Tenacity…Bravery…all great things!



But the best thing about tigers…They’re cats…They always land on their feet.



Chris is my tiger, and I know that she’ll do the same!




Wednesday, February 15, 2012

From Medical Crisis To Inspiration



"When life gives you a hundred reasons to cry, show life that you have a thousand reasons to smile." ~ Author Unknown



I have so many other topics I would like to blog about rather than my current health issues but I have been blessed by the support of those closest to me wanting to understand exactly what is going on with my recent medical issues. There are people in my life, some new and some old, who have been following my health saga over the past six weeks or so and don't quite understand what is happening to me physically because it is either ridiculously complex or because they do not know my medical history. Also, there is only so much explaining I can do on Facebook; not that I mind but sometimes it is easier to just put it all together in one place. I don't expect that everyone wants to read it, but for those of you who do, here it is.


A little background which is important...


When I was twenty-four years old, I was diagnosed with Hodgkin's Lymphoma which is a type of blood cancer. I was treated with radiation for three months, went into remission and have been fine ever since in regards to the cancer.



About six years later, in 2002, I was diagnosed with a heart condition called supra ventricular tachycardia which means my heart was not beating properly because of a conduction problem in the heart. It was never decided for sure but it is possible the condition was a result of the radiation treatments that I had for the Hodgkin's Lymphoma. Medications failed to manage the condition and I underwent a heart procedure called a cardiac ablation which surgically fixed the conduction problem with my heart. No further issues.


In 2004, I mysteriously developed a blood clot in my left leg which is called a deep vein thrombosis (DVT). I was a non-smoker but I was overweight and on birth control pills which are high risk factors. However my primary care doctor at the time decided that still seemed a little too unusual so he decided to do some investigating. It was discovered that I had a genetic blood clotting disorder called Factor V Leiden. I was treated for the blood clot in my leg and the decision was made at that time, since I had a milder form of the disease, that I did not need to stay on blood thinners for the rest of my life. I would only need to go on them if I got pregnant, had surgery, was on a long flight, etc. All was well and I rarely ever gave it a second thought.



In 2008, I began to have multiple health issues that I had never had before. I will spare you all the details but basically I was having severe joint pain, dry eyes, mouth, and nose, memory loss, stiffness, extreme fatigue, asthma for the first time in my life, issues with my voice, severe headaches, fluid in my lungs, the list went on and on. I knew something was really wrong with me and I saw at least twenty doctors, trying to get to the bottom of it as it was getting harder and harder to function on a daily basis. I was often dismissed, called a hypochondriac, or just told "I don't know what is wrong with you."



I persevered and after seeing my fifth rheumatologist, as I felt strongly that what was going on was autoimmune related, I was diagnosed with an autoimmune illness called Sjogren's syndrome in August 2011. That one you can Google search if you so choose! The disorder has been called a "cousin" to another autoimmune illness called lupus. It takes the average person seven years to get this diagnosis. Some people get a mild version, some get a more severe version. It would appear that I have gotten the latter. There is no cure and I have been through many trials of steroid pills and some other medications to try and control my symptoms. There is new research being done at this time for new treatments. Around the time of the official diagnosis last August, my symptoms started to progress a bit in terms of my salivary glands malfunctioning and dryness becoming more of an issue. However I was also learning more about how to self manage my symptoms including with diet and alternative treatments such as acupuncture, stress reduction, etc. I was determined to get my illness under control and hopefully get back to work at some point.



Before this past Christmas, I noticed that I was starting to have a lot of pain in my legs that was different than my usual joint pain. It was getting harder and harder to do walks with my dog Molly. Right after Christmas, the pain got to the point where it was difficult to walk at all. My walking was unsteady and I was stumbling at times. The pain was the worse I had ever known. It was thought to be nerve related pain and I was started on steroid pills at a high dose at home until I could see my rheumatologist. By the time I saw her, I was having extreme weakness in my legs and arms, making the most basic of tasks like showering very difficult. I also began to have tremors and severe weakness in my arms making driving and other tasks difficult as well. I was struggling with writing and typing as I kept mixing up my words and letters, similar to someone with dyslexia and my short term memory was impaired. Scary stuff.



My very awesome rheumatologist took this all very seriously and felt that I may have neurological involvement from the Sjogren's syndrome which can happen and is not all that rare from what she told me.  I had an MRI of my brain that was normal, which does not mean much in relation to the Sjogren's, but does rule out other freaky stuff like brain tumors, etc. She decided that since I had a little improvement with the steroid pills, we should try very large doses of IV steroids at the hospital by admitting me for a few hours, giving me the infusion, and sending me home. The first infusion helped my walking and writing/typing significantly so we scheduled several more to try and combat the rest of the symptoms.



The side effects from these steroids, both the infusions and pills at home, are something I cannot even begin to adequately describe. Everyone reacts differently but my main issues have been not sleeping (I was sleeping 2-3 hrs a night WITH sleeping medicine), nausea, reflux, severe headaches, and mood changes that scare the crap out of me sometimes. After six weeks of all these steroids, I think I have forgotten what it is like to truly feel like myself. But I know the neurological stuff is a big deal and it is critical to stop its progression before it does permanent damage; so I just set my mind to the fact that I will get through it as best as I can.



My second infusion was this past Friday. I had the same side effects as the first infusion two weeks prior, however I began to have heart palpitations that Friday night and by Sunday morning I knew I had to call someone. I thought it was related to the steroids because I am a nurse and well, I know these things. But keep in mind, I also had a history in 2002 of heart issues and it was something I didn't think I should mess with. The on-call rheumatologist thought I should go to a local ER and get an EKG to determine what was going on and if it was something that needed to be treated or if I had to ride it out. The EKG was essentially normal except for some occasional abnormal fast heartbeats thought to be related to the steroids and some fluctuations in my blood pressure.


However one of my labs came back abnormal indicating a POSSIBILITY that I may have a blood clot somewhere. Blood clots can also cause heart palpitations and other heart issues. The way to determine for sure if you have a blood clot in your lung is to do a CT scan of the lungs while injecting contrast through an IV to light up the lungs. I did have a blood clot all those years ago and that blood clotting disorder as well so it was important to make sure there was no blood clot.. As bad luck would have it, I am allergic to the contrast so they had to admit me to the hospital to give me a few doses of medications to prevent the allergic reaction since I HAD to have this scan done. Several docs at the hospital really thought the heart palpitations were related to the massive doses of steroids I was getting but they really had to follow through and know for sure so they could justify safely sending me home. I was admitted to a cardiac telemetry unit. They started giving me blood thinner injections just in case...standard protocol


About 10pm that night, after I had the CT scan done, my very kind night nurse came in and told me that despite the odds, they DID find two small pulmonary embolism (blood clots) in my lungs. Ridiculously scary I have to tell you. Does not pay to be a nurse at times like this because you know the worse case scenarios. They said I should be OK with the blood thinners but it was good that I came in with the heart palpitations because I might have avoided a larger, fatal blood clot. I just cried.


The problem is they do not know if the clots are from having this clotting disorder or from my Sjogren's syndrome. What it does do is complicate things greatly as I may need to stay on blood thinners the rest of my life which not only carries risks with it but affects different aspects of my life like my diet, other medications, etc. The hospital sent me home on blood thinner injections which frankly suck (much easier to give them to a patient than yourself!) and I have to start getting my blood work monitored to make sure that my blood is not too thin and not too thick; as either extreme is not good. My primary care doctor today was incredible though and we have a plan for the next week or so. I will be following up with a hematologist hopefully very soon to figure out more what is going on and if there is an autoimmune component to all of this.



The good news is that my neurological symptoms have improved a lot more since that second infusion on Friday but now my rheumatologist and I have to decide about whether we are going to risk another steroid infusion this Friday. We both feel that I have been through so much that let's just finish the job and see how stable we can get me neurologically; as long as we can do it safely. We will make that decision together tomorrow depending on how my heart is doing. Meanwhile I am scheduled to see a neurologist next week as well as my pulmonologist. I am taking one hour and one day at a time; making sure that the priorities are getting to appointments, keeping track of what is going on, staying on my medication schedule and taking care of my basic needs such as showering and eating.




I sit back as I am writing this and I realize it is good to put it all down. Not because I want people to feel sorry for me but because I know people are concerned and it is a complicated situation to understand. Writing it down has made me realize that I AM as strong as those close to me have told me I am. I think it would be easy for me to sit here and curse God (which yes, I have already done) and ask when is enough enough? But I know there are so many people who endure so much more than I do. Granted, I do think I got the bad luck of the draw in the "illnesses you cannot prevent department"; but this is my life. My life where I have learned so much about the world, myself, and other people ~ topics that make for some great future blogs!


My life where at some point, hopefully in the next week, being able to get outside in the fresh air and sunshine with Molly will far outweigh the importance of what this person or that person thinks about me.


My life where I grasp tighter more opportunities to let those closest to me how important they are in case I never get another chance to do so.


My life where I have discovered that my ability to make a small difference in someone else's day with either a kind word or a smile far outweighs the drama that other people in this world may produce.


My life where my priorities have shifted so much that I no longer care about how perfect my house or yard look because I am too busy appreciating having the love of my life holding my hand in a hospital room; his love nourishing my soul with every squeeze and every gentle caress of my hair.


So I guess right now, at this very moment, my life is looking pretty good to me....

Tuesday, February 7, 2012

Another Morning

"When you arise in the morning, think of what a precious privilege it is to be alive-to breathe, to think, to enjoy, to love." ~ Marcus Aurelius





I wake up and it is another day. I stop to think of that fact and be grateful for it. That is important, very important. It is so easy to get lost and discouraged first thing when you wake up. I have slept maybe two hours. Maybe four. The nights can be long. But I am awake. And I can move. Maybe not always easily or without pain, but I can get myself out of bed. I lie there and think about the struggles ahead of me that day and then I stop to think about what I can offer that day to make it a better day, one with a purpose; for myself or for someone else.



I prioritize in my head what is necessary to do and what is optional. Most of it is optional, it has to be. If there is an appointment I have to be at, the day revolves around getting to that appointment. I get out of bed and take my medications. So many pills in their carefully laid out pill box.

Steroids.
Inhalers.
A yellow pill.
A lot of white ones.

It is helpful to be an organized person when it comes to the taking of the pills.



Next priority is drinking as much as possible. The dryness has woken me up throughout the night, despite the humming of the constant humidifier and fumbling with eye drops and mouth moisturizer several times in those wee hours. The concept of too much water does not exist in my mind. My body soaks it up eagerly like it has never seen it before. Now, a bathroom run for me. A bathroom run and fresh water for Molly. I am already having difficulty convincing my arms and legs to work in their proper fashion.



Back to bed to check e-mails and Facebook. I am looking for inspiration. Something that will make me laugh. A kind thought from someone. A status update about something good happening to someone; something to help replace the light and joy that the steroids have taken from my normally even keeled and sunny disposition. I take a cookbook or two back to bed with me to figure out what nourishing meals I can put in my body to help heal it. If the day is all mine and not one that is a slave to doctor's offices or hospitals, I try to figure out how much I can do and again, what the priorities are. The priority might be completing a load of laundry. It might be vacuuming. Whatever it is will have a price, a physical price. I used to feel accomplished when I could go and go for fifteen hours at a time. Now I am grateful if I can manage to get through thirty minutes of activity.



And so it goes. Getting myself showered and dressed used to take forty-five minutes with a good end result. Now it is a two hour production and the goal is a clean body and clean clothes. It's not as hard as last week though. That is a very good thing. I miss being able to do more physical activity. I miss being able to walk my dog and feel the power of my stride underneath my body. I will never take that for granted again. My wish is that no one else reading this ever does either. How much will I get back? Yet to be determined.


I am learning the art of being gentle with myself.  I am more aware of the importance of caring for myself in the most basic of ways. The comfort of hot water on my body. The wholeness of fresh green vegetables entering my body. The smell of fresh air. The power of a comforting touch. Things which I never noticed when I was too busy running from one place to the next; from one task to the other.



This illness forces me to be more aware. Every hour, every minute is a reminder of all that is currently not working correctly in my body. Constant thirst. Constant eye irritation and difficulty getting my eyes to adjust. Weakness. A medication of some sort almost every hour. Arms that shake. Side effects from medications. Legs that don't move like they should. Pain. Food that gets stuck in my throat when I swallow. Exhaustion.



Frustration.

Anger.

Fear.


I will be more than this.
I am more than this.


Remember to smile.

Breathe.

Remember what is important.

Breathe.

Remember that another morning will come.

And with it, hope as well.






























































































































































Photo: Courtesy of Google Images

Monday, February 6, 2012

Simply Stated


"What lies behind us and what lies before us
Are tiny matters
Compared to what lies within us. " ~  Oliver Wendell Holmes



This is going to be a simple blog entry today.




Be strong.







Have faith.







Believe in true love.







It can conquer all.

















































































































































































































































































































































































































































































































































































































































Photos Courtesy of Chuck Myers and Godvine