"In order to write about life, first you must live it." ~ Ernest Hemingway

Category: perseverance (Page 3 of 3)

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….

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

Perseverance

“Perseverance is a positive, active characteristic. It is not idly, passively waiting and hoping for some good thing to happen. It gives us hope by helping us realize that the righteous suffer no failure except in giving up and no longer trying. We must never give up, regardless of temptations, frustrations, disappointments, or discouragements.” ~ Joseph P. Wirthlin

I had no intention of doing another blog entry this week; especially because I have other writing that I wanted to do. However it’s been one of those days where I need to write what’s first and foremost in my head and right now, that is the subject of perseverance.

I have had some significant medication changes lately for my autoimmune disorder. We can call it Sjogren’s Disease but the reality is, I don’t think anyone is particularly convinced that this disease is the sole diagnosis, even my doctor. That is the problem with autoimmune disorders; there are about eighty of them and accurate diagnosis for many of them is a joke at best. Many of us struggle for years, if not a whole lifetime switching from one diagnosis to another; oftentimes running around with several diagnoses at once. I am pretty sure that our rheumatologists get just as frustrated sometimes as we do with the merry-go-round of uncertainty and frustration, but the reality is that as patients, we live with it every single day of our lives-the uncertainty and the frustration.

Today was a particularly frustrating day because we had to come up with a new plan for my medications. The autoimmune stuff and meds have been a three ring circus (more so than usual) since the end of June. I think that typically, I handle this whole health issue thing pretty well and with a decent amount of dignity, but today was one of those days that I was just pretty damn sick of it. Sick of dealing with being poked, prodded, and asked the same questions over and over. Sick of explaining to people why I am not back at work. Sick of worrying and wondering which toxic medication will do me in first. I know it sounds like one giant bitch fest but it really wasn’t. I was just wishing for a day where my health issues did not play into my life at all.

Then as I was driving home, I was thinking about how my health was right before I started seeing this particular rheumatologist in December of 2008. At that point, I was so freaking sick and no one could figure out what was wrong with me. I really thought I was going to die. I was scared because I was getting sicker. I had terrible difficulty breathing, had lost some feeling in my feet from nerve involvement, and pain so bad that at points, if someone had offered me a gun, I probably would have taken it. Three rheumatologists told me I did not have an autoimmune related disorder and two primary care doctors threw their hands up in dismay. I saw more specialists than I could count. There were times I could not even take care of myself. On more than one occasion, I was told maybe it was in my head. I was even told that all I needed was a vacation. A vacation… really? How would you suggest I get myself there since I can’t stay out of the hospital??

Yes, today I know I am still not in an optimal place physically but the reality is: I am in a MUCH better place than I was in December 2008. The reason: I persevered. I researched, asked a lot of questions, did not take “I don’t know” for an answer. In desperation, I found a pain specialist who tried me on steroids for five days and we saw a miraculous transformation occur, most likely indicating an autoimmune disorder. Yet three other rheumatologists could not be bothered to try this before he did. So I found a rheumatologist (who was my fourth and current one) who knew what the hell he was doing and took me seriously.

According to Merriam-Webster, to persevere is defined as: to persist in or remain constant to a purpose, idea, or task in the face of obstacles or discouragement. I have a purpose: I’m going to kick this thing’s ass. Seriously. I was having a conversation with a friend several months ago about my health. My friend had the best of intentions, but she implied that I may have to accept that this is as good as it’s going to get. I had to disagree. Have I accepted that I have a chronic illness that will affect me the rest of my life? Yes…got that one loud and clear; although the acceptance thing did take some time. Have I accepted that I will probably never work in a hospital as a pediatric nurse in the capacity I worked before? Yeap, got that one loud and clear also. What I am not going to accept is that the way my body is functioning now is as good as it gets. Because once you do that, you’ve given up. You can have realistic expectations of yourself and adjust some of your life accordingly, but you never give up hope, never stop researching, never stop challenging your doctors, and never stop pushing yourself further than you thought you could go.

So as I was getting ready for bed tonight, I thought about how the past few months have just been obstacles in this journey towards better health. I realized that in the scheme of this fight, this doctor’s appointment today was not a big deal. I have persevered through much worse. I’m going to continue to fight the fight and not give up hope that at some point, this whole autoimmune thing will be under control on a regular basis. I will persist, hope and persevere. I will not accept any less.

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