So Much Has Happened...

Wow...so, it has been four weeks since I wrote last on Thanksgiving Day. In that time I feel like a lifetime has happened. So much has occurred both in the world at large, and for me personally. First, the personal news.

 I originally came home just for Thanksgiving. However, once I was here, it was determined it might be best for me to stay a bit longer for me to have the second right heart cath I needed to have performed. So instead of flying home the day after Thanksgiving, I went to Vegas with my Mom for the weekend (way fun!), and had the heart cath the second week of December. It's a good thing I went ahead with that cath, as it gave me some much needed information. The last cath I had in September, the Dr botched it. Lets just say things did not go well (a mistake was made and I went into cardiac arrest during the procedure), and the numbers that we were given at the end of it did not make sense, so it was recommended that I have a repeat done. Obviously, I didnt want to go back to the same Dr who made the mistake in September, so I asked the Cardiologist who took care of me before I left CO if he'd be willing to do it. He couldn't, but referred me to his partner, who scheduled me right away. 

For obvious reasons I was a nervous wreck the morning of, but Dr. A was super reassuring, and I knew it was the only way for me to get any answers regarding the Pulmonary Hypertension. For three months now Ive been going through a rollercoaster of it is, it isnt, it is, it isnt, and I was at a point where I just needed to know so that I could get treated and move on. Finally I felt like I was in good hands, and I was. Two hours after I went in I had all the answers I needed. I do in fact have Primary Pulmonary Arterial Hypertension (the most severe form), and they believe it is due to Lupus. The good news is that the chemo I am on for the Lupus is tempering the PAH, so for the time being the pressures inside my lungs are on the high side of normal. This is awesome as I dont have to start on the (sucky) meds for the PAH right away. They will monitor me with echos every few months, with a right heart cath yearly. Should I start having symptoms, then they will do a repeat cath and administer PAH meds during the procedure to determine which meds to start me on. While this news was in some ways devestating, and there were some tears shed in the days following the cath, I am just so grateful that I stayed in CO to have the test done. If I hadnt, I would have stayed on the answer rollercoaster, and the likelyhood is the PAH would have advanced and I would have been much, much, sicker when it was diagnosed. While I know that the likelyhood is that I have an uphill battle in front of me with serious meds, and very likely a lung transplant, the silver lining in it all is I have an answer. And knowledge is power. As long as I know what I might have to deal with, I can handle it. For me, it is in the not knowing, the shadows, where the fear lies. The truth always lies in the light, and no matter what, that is always a blessing. 

The second blessing is that I have decided to move back home to CO. When I moved to FL in the spring of 2010, the recommendation for the move was based on the fact that I would be able to stave off the worst of the PAH symptoms for some time, even possibly 5 years or more. However, in the last year my health has declined pretty rapidly; after my Pulmonary Embolus last summer, my lungs seems to get sicker, quicker. The whole idea behind the move to South FL was that Id be at sea level, and Id be able to put off the most serious of the medical interventions for some time. It did work this way for a short period of time, but now I am back to being on O2 24/7; I cant walk without it, sleep without it, sit or stand without it. If I try to take it off for even just a few minutes, to leave the room and come back, my O2 drops down into the low 80'a with my hear rate soars into the high 120's.  This has definitely made life more complicated, and my O2 concentrator has become my new "best friend" as it goes everywhere with me. However, when I get annoyed or frustrated I just remind myself of how I feel without it (like Im suffocating), and that this little blessing of a machine is literally saving my life on a daily basis. When I think of it that way, suddenly everything gets put into perspective and Im not quite so annoyed anymore. Again, for me it is always about trying to find the positive, the silver lining, the light of it all. This time that silver lining is being near my family and friends once again, it means having an answer that I can deal with, no matter how difficult it gets; and I know the more difficult it gets the more the people I love pull around me to give me the strength to get through to the next minute, the next hour, the next day. This is the silver lining, this is the light, and this is what I turn too when things get really hard.

Shadows and light brings me to what has been happening in the world at large. Just a few short weeks ago, while we were all blissfully getting ready for Christmas, we experienced a tragedy the likes this nation has never known. On December 14, 2012, we learned that a very sick young man took to Sandyhook Elementary School, and for reasons we will never know, or understand, killed 20 children and 6 staff members. All of the children were six and seven years old. No family should ever have to grieve the loss of a child, but especially in such a brutal and unexpected way, during of all times, Christmas. These families said goodbye to their children that morning expecting to see them that afternoon. Many had Christmas festivities planned; several were supposed to decorate their homes when they got home from school that day. Their parents were in the last weeks of present buying, and getting ready to have their kiddos home for two solid weeks. Now suddenly, instead of Christmas planning, they were planning their babies funerals. These families, this community, will never be the same again. But just as the truth lies in the light, so do the souls of these innocent children that were taken before they ever got the chance to even begin. The pain, the fear, the anger, the act itself, resides in the dark, and one thing I know for sure is that the light always overtakes the dark, no matter how dark it gets. It will get light again, it's just going to take some time.

I hope that all of you friends out there had a wonderful Holiday season, and that no matter how hard things get you are able to find the positive side, the light, in your own lives. I know it's not always easy, but when things get their hardest, when you feel like all you can see is the dark, that's when we have to turn to the people who care for us the most; because they will give you the strength when you feel empty, and suddenly what seemed like nothing but dark, suddenly turns to light, and that is the most beautiful blessing of all. Happy New Year all, may this year have in store everything you wish it to be; that it's filled with more light than dark, more love than hurt, more joy than loss, and the happiness that you deserve.

Love,
Heidi

No Place Like Home...

Today is Thanksgiving and I am writing with such a full, grateful, and happy heart. Every year I am Thankful, but this year I am even more so. I am Thankful for having an amazing family that makes me feel loved, I am Thankful for having friends that see me through the darkest of days and the most dazzling of moments and show me that I am never alone. I am always Thankful for my health, even though Lupus is always on the forefront of my mind; on the good days it is just there on the edges, on the worst of days, it is the primary focus, but I am learning how to deal with it, and that is a blessing. Most of all I am grateful to be home, to be surrounded by the people I love...there's just no place like home.

Going Home for the Holidays...

Hi All!
So, I got permission earlier this week to go home for Thanksgiving! This is beyond exciting news, as after I got so sick when I went back to CO in May I thought my days of going home at all anymore were over. However, the Dr said if I stayed in Denver instead of going to my parents house (who are at nearly 8000 ft), and I use my portable oxygen the entire time (the only bummer), then I can go for a few days. I can not tell you what good this did my heart to hear. My mom was originally supposed to come visit me here in FL for Turkey Day, but she has Fibromyalgia and has been really tired recently, and wasn't sure shed be able to make the trip. So I was concerned that I may be spending the holiday alone. Don't get me wrong, I have friends, but for the most part those friends are spending the day with their own families or spouses, and I feel like I am intruding. This leaves me alone on those "family" holidays, and I have to be honest; I hate it. The other 362 days of the year, I don't mind being alone. But when it comes to Thanksgiving, Christmas Eve, and Christmas, I want people around me. The more the merrier, especially if the gathering includes Christmas music, food, and hearing people laugh.

Being a chronic pain sufferer, and as someone who has a chronic illness, I know how hard holidays and gatherings can be if you do too much. But I also know that if you just stay in bed and hide, you miss out on some of the best memories you may ever make. So that is the question, my fellow Lupus Comrades; how do you balance? Hoe do you say no to one person, and yes to the next, without ticking off person number one? How do you say, yes, Id love to have a get together at my house, but I really need help putting it together, I cant do it on my own. Or, yes, Id love to have Thanksgiving at our house this year, but we need to ask everyone to bring a dish, so it's not all on me, and I can actually enjoy the night! I know often we feel guilty doing this, because we are comparing ourselves to Mrs. Jones, and Mrs. Jones could do it all, and still kick a little ass while she was at it! But remember this, Mrs. Jones is totally healthy, and she might be able to go out a kick a little ass, but so are you, your'e just doing it behind the scenes, and the ass your kicking is Lupus' ass! This is a much harder battle, and the struggle is invisible to many. 

Despite knowing this intellectually, emotionally it can be a different story. Emotionally this time of year can bring on the blues, especially if you feel you are alone. So answer me this; how do you avoid the blues during the Holidays? Do you spend it with friends? Do you volunteer? Do you travel? What do you do to maintain balance, keep yourself happy, and enjoy this time of year? I know for me, I have to be with my family. I just don't feel like me during the Holidays if I'm not surrounded by the people I love, and Ive learned that for me, there is just no getting around that. 

Now I want to hear from you! Tell me what you do during the Holidays to avoid the blues, and how you maintain balance so you remain healthy. I'd love to hear any tips you all have to avoid a Lupus Flare during this busy time of year! 

With that, Happy Turkey Day my friends! May you have a happy, Healthy, wonderful Thanksgiving.
-Heidi

Methotrexate and Hair Loss...

Hi All!
So today's lovely topic is...drum roll please...hair loss! I am on Methotrexate right now, along with Plaquinil (an anti-malarial), and Prednisone (a steroid). Now, Ive had some minor hair loss from the steroids before, but this is on a whole new level. I noticed about a week ago I had clumps on the back of my shirt, and on my pillow. I also found that I was taking out a lot when I brushed my hair. Fortunately for me, I have a lot of hair (the hair dresser always comments on this!), so right now it's probably only noticable to me. But whats frustrating is the texture has changed too, from coarser and thick, to baby fine and thin. The former was a breeze to style, the latter not so much. So I'm asking all you Lupus Gals, what do you do when you notice your hair is changing? Is there a certain product you like, or treatment you get at the salon? Do you wear a wig, or say screw it, and wear it just as it is? Do you have any styling tips for when it thins out? Let me know! This is all so new to me, so any advice is welcomed! I hope you all are having a great week, and that you enjoyed your three day weekend!

I look forward to hearing all of your tips and advice!
Heidi

Veterans Day and Being Thankful...

Hi All!
Veteran's Day is today and it has me thinking about the people in my life who have served, both past and present. It also has me thinking about this last week with the Election, and some of the "aftermath" of that Election.

First, let me start by saying Thank You to those in my family who have served. My Mom's side of the family is filled with Military Service, from my Mom herself (yep, she was an Air Traffic Controller!), to my Grandfather, or My "Opa" (Grandfather in German) who started as a Medic in Vietnam, and became a Helicopter Pilot and who served for more than 25 years. In those 25 years he saw multiple tours of duty in Vietnam, Korea, and the Congo conflict. Then when you add in spouses, everyone has "served" in the military somehow! My Mom met mt biological Dad in the Army; she did Air Traffic Control, he did Tower (sorta my version of Cinderella!), my Aunt married military men, and her son's followed in their Dad's footsteps, so at one point she had two sons and a husband all over in Afghanistan and Iraq...still to this day Im not sure how she managed that! 

When I was a little girl, and still some to this day, I am in awe of the soldier and what he or she stands for. I have spent hours staring at pictures of my mom and grandfather during their service, in their camo, doing their jobs; that particular moment caught in time for eternity. It's a whole other world, that we as "civilians" are on the outside looking in on, only to guess how it must feel to be in their shoes, to do their jobs, in a world that very few fully understand. I think for this reason days like today are so important; we frequently say thank you to our men and women who are serving, but those Thank You's are often, almost, automatic. Today is a day when we can say Thank You correctly; despite our politics, what we do or dont believe, today is the day when we say a TRULY heartfelt THANK YOU. Thank you for keeping us safe, thank you for allowing us the freedom to be able to speak our minds without worry of penalty, thank you for the sacrifices that you make day in and day out; you miss out on Holidays, sick days, birth days, babies births, the big moments, the little moments, all the moments that matter. Thank you for being willing to make those sacrifices so that we can truly say that we live, "in the land of the free, and the home of the brave...."

My Diagnosis and Being Your Own Advocate...

Hi Everyone!
So I just took a look at my Stats for the first time, and I have people in Germany and Kuwait reading The Butterfly Chronicles! Not to mention all of you here in the States, including Alaska! Thank You for reading, this is so cool!

Today I wanted to give you all a little insight into my journey, and how I got to this point. I began having rare, out of the blue illnesses in 2002. I woke up one morning to get ready for work, and had the worst headache of my life. Within minutes I realized something was seriously wrong because I couldn't see. I literally couldn't read the shampoo bottle in the shower. I called out for my best friend and roommate, and she called my mom. My mom told my best friend, Amber, to immediately take me to the hospital. She did just that, and I was immediately taken back. They did an intensive workup, including a spinal tap. Once the tap was completed, they diagnosed me with Psedotumor Ceribri; a condition where for reasons unknown the body thinks there is a tumor in the brain and creates an overproduction of spinal fluid. This causes extremely high pressures in the brain that can be fatal if left untreated. 
 For the next year they tried to manage it with medicine, but it didn't work, so they put in a shunt. However after the shunt was placed I didn't really get better, and so began a cycle of going to the Emergency Room on average three days a week. I was diagnosed with intractable migraines, and for a year spent 266 days in the hospital or admitted to migraine clinics. After a year of this I got extremely sick again, and was admitted to the ICU. They said I needed to have my shunt replaced, but the Surgeon on call wanted to wait for the Surgeon who originally put the shunt in. My mom stepped in at this point and got me transferred to a hospital who's Neurosurgeon was incredibly respected. Once I was transferred, Dr. Levy (the Neurosurgeon) walked in, took one look at me and asked me a question that Id never been asked before. He said, "Heidi, what does your gut tell you?". I looked him in they eye and said, "My gut says something is really wrong, that if something isn't done, I'm going to die". He looked at me with the most intense blue eyes and said, "okay, we go in first thing in the morning." He did the surgery at 6am. A few hours later he came out with my old shunt tubing in a bag in his hand and told my mom that my gut was correct; my shunt had been inserted in the wrong place, the tube was inserted into my brain matter instead of the ventricles that create the fluid. What Id been experiencing for the last year hadn't been a migraine after all, I had been in chronic shunt failure for a year. He was shocked I hadn't died before then. 

After that surgery I began calling him Superman; it was like he came in with a cape in the middle of the night, and literally saved me life. I am forever grateful. This situation also taught me a valuable lesson; trust your gut. You know your body better than anyone, if you feel something is truly wrong, it probably is! Don't let someone else talk you out of that feeling. This lesson would come in handy over the next few years, because this was only the beginning of Lupus rearing it's ugly head. 

Once I had my shunt replaced, I did a little bit better over the next few years, with the exception of having to have my shunt revised and moved three more times. By 2006 despite the multiple brain surgeries, I had gotten my EMT, and was volunteering for the Red Cross doing medical fairs, and working as a Unit Secretary in a local ER. I was really enjoying my life.

Then in November 2005 I bad to have a pace maker put in as it was found both my mom and I had familial Long QT type 2 (an electrical arrhythmia of the heart). I recovered well from the Pace Maker surgery, but in January 2006 I began having incredible chest pain, and difficulty breathing. My mom took me to the ER and was admitted to the ICU where it was found after an echo that I had Pericarditis (an inflammation of the sac around the heart). They immediately started me on high dose steroids, and pain meds. I stayed in the hospital for a week, and was told that if I had a recurrence they would work me up for Lupus, but they were thinking that this occurrence had happened from a flu bug Id had just a few weeks before over New Years. So after a week I went home to recuperate. I thought I was doing well, but as soon as they tried to reduce my steroids, the symptoms began all over again, and in March I was admitted yet again. This time the stay was longer, the dose of steroids higher, and a workup for Lupus began. By the end of the stay they were calling me "Lupus Like" as my ANA wasn't staying consistently positive. This time they added Plaquinil, and waited a little longer before reducing the steroids. However, when they tried to reduce the Prednisone a second time- you guessed it!-I relapsed and ended up admitted to the ICU again. This cycle lasted until August 2006 when I collapsed from Congestive Heart Failure. This time I nearly died. My mom actually came and got me, and I don't remember the car ride there. I don't remember being taken back to the Crash room. I vaguely recall a bunch of people talking urgently, and moving with purpose. As an EMT I knew this was bad. The next thing I recall is a nurse yelling that my blood pressure was 76/42. A Dr. then said "no way, take it manually". The nurse did, and got the same reading. At that point the Dr. said to hang a dopamine drip to get my blood pressure up. I remember them putting a special line in my neck, and someone telling my mom that she needed to step out. At that point everything goes black. The next time I regained consciousness I was in the ICU, I stayed there for a few weeks, but I didn't get released from the hospital until after my open heart surgery. 

In October 2006 I was moved from the hospital I was at, to a major university hospital who had a Cardiothoracic surgeon who could do a partial pericardectomy. They did the surgery on October 8, 2006.
The surgery was a success but they had serious complications during the surgery itself (Ill talk about that in a later post). However, when they looked at my Pericardium under a microscope they saw inflammation and fibrosis in my Pericardium. Bottom line, I had Lupus in my Pericardium. They told my family after the surgery that if I had another recurrence, that I would likely need a heart transplant due to the amount of damage to the heart muscle itself. However because of my changing ANA they refused to call it Lupus, so no Lupus treatment was started.

For the next year I did okay. Then in May 2009 I began to have symptoms of the Pericarditis again. My Rheumatologist immediately got me into the Mayo Clinic to have a Radical Pericardectomy. I was also told that I may have Pulmonary Hypertension. On May 14, 2009 we drove to Rochester, MN for the surgery. I was told that due to my history, I only had a 10% chance of making it through the surgery safely. As it turned out, they did have some complications; my phrenic nerve was damaged in the course of removing my Pericardium, so my left lung is now completely paralyzed.

A year later, I was admitted to the hospital for CHF again and shortness of breath. At this time, I was told that I had Pulmonary Hypertension and needed to move to sea level if I wanted to avoid a heart and lung transplant. Six weeks later I made that move. While it was incredibly hard to move away from my family and friends, there was a silver lining to the move as I had to find new Dr's, one of which was a new Rheumatologist. This new Rheum took one look at my medical records and said, "and your not on immunosupressant therapy why? You absolutely have SLE, you just fall into the 15% of people who may never have a + ANA." I looked at him and I just cried. I was so grateful to finally have a diagnosis. The last thing I said to my CO Rheumatologist, was "your going to find out that this is Lupus in my autopsy, something has to change or this is going to kill me." His response? "Who's the Dr here, you or me?". I was blown away by this statement, and it brings me back to advocating for yourself. Lupus can be impossible to diagnose. Many people get the wrong diagnosis before they get the right one. I was made to feel it was all in my head; I cant tell you how many times a Psychologist was sent in to talk to me during my hospitalizations, and each time at the end of the time they would look at me and say "you don't have anything wrong with you psychologically. You know there is something wrong, and you aren't letting it go, and that's how it should be. You are your best own advocate, only you know your body." It was those statements that emboldened me to speak my mind when I knew something was wrong. If I didn't say it, who would? And this is me imploring you to do the same; if you know something is wrong, speak your mind. If one Dr says no go get a 2nd opinion, a 3rd, a 4th if you need to. Only you know you! Don't ever take no for an answer when in your gut you know otherwise! This is the best advice I can give you; Always, always, always, trust your gut instinct. It is never wrong! It's the same thing that makes the hair stand up on the back of your neck. That feeling is a primal instinct, it will never let you down if you really listen to it and you don't second guess it. If you have that feeling around your health, then you must do something about it. Advocate for yourself, and if you cant do it anymore, go to someone you trust; be it a spouse, a best friend, your mom. Tell them what your feeling, what your thinking and take them to appointments with you. For me it was my mom. I have had moments where I just couldn't fight anymore. At those moments my mom stepped in and fought the battle for me. I truly believe without her doing that for me I wouldn't be here to write this today.

Thank you for taking the time to read this! If you take just one thing away from this post, take away this; advocate, advocate, advocate, and if you cant, turn the fight over to someone who can. And last but not least trust your gut; if you go to one Dr and don't feel they heard you, go get a 2nd opinion (or a 3rd, or a 4th if you need to!). If you have any questions for me about how to do this, write me! I'd love to be a resource, or a support for you if I can. Just know, you are not alone in this!

Love,
Heidi

The Beginning!

Yeay! This is my first post for The Butterfly Chronicles and I am so excited to put it out into the world! As I mentioned in the intro for the blog, I have Lupus. I was diagnosed with it in 2010, but began getting sick in 2006. The last six years have been filled with illness and tears, but also with transformation. This is why I picked the butterfly as my symbol for this blog; not only is the purple butterfly the "mascot" for Lupus, but it is also the symbol of new beginnings and transformation.

 I am at another one of those crossroads with this disease now; a few weeks ago I was diagnosed with Pulmonary Hypertension as a result of the Lupus. I am at a point where I am trying to find the right Doctors so that I can get the right treatment, and have the best outcome. One thing that has been difficult for me recently as my diagnosis came in October (the month of breast cancer awareness) is the lack of resources for Lupus patients. My rant has been, "I'm on the same chemo regimin that cancer patients are on, yet I get none of the resources!". This most recent rant came after I saw a piece on the local news about an organization that provides makeovers and wigs for women going through chemo therapy for Cancer. My question to my friends and family was this; chemo is chemo, why cant I as a Lupus patient on chemo get the same benefits and resources as a woman who is on chemo for Cancer? I have the same concerns, and feelings. I definitely have the same insecurities about my looks! (prednisone anyone?!). When I said this on Facebook, a friend wrote me and said, "I had no clue that you had to take chemo for Lupus! You should start a blog to spread awareness about it!". So after thinking about it (obsessing about it really) for the last few weeks, I decided she was right. So here it is, the first official post of the Butterfly Chronicles! I hope you enjoy reading it as much as I enjoy writing it, and I look forward to hearing from you all!

Love,
Heidi