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….
