Life's lessons at times taught through the hard way. Through my battle with autoimmune disease I find inner strength in my life through the courage, hope and the natural discovery on what it truly means to be a survivor.
Ok so I have touched base before on other autoimmune diseases through out my blog. So many people who suffer from one autoimmune disease will find out through time that they may suffer from others too. It is extremely important to educate those with autoimmune disease about others they may come across and we all can agree it is just as important to educate healthy individuals about the struggles so many of us go through so that they have they have their own tool box of knowledge to help us when we need them the most!
Ok, so what is my point you ask?!?!?!?! Well, for the month of November my goal is to post everyday on different autoimmune diseases. It will not only be beneficial to me but I hope it will also be beneficial to friends who stop by the blog. All I am asking is to help me by emailing me or posting on Facebook autoimmune diseases that you, your friends or family members may suffer from or one you would like to just know a little more about.
It is the month to give thanks for all of our loved ones and there is nothing more amazing than kindness and understanding from others when you struggle with something in silence. Please let your loved ones and friends know just how they mean to you everyday, not just on Thanksgiving!
Sometime having an autoimmune disease breaks my heart and tries to darken my belief in all things good. Lately I find myself feeling paralyzed by my thoughts and heartbreak. It sits so heavy on my chest at times I struggle to catch my breath. I am reminded everyday that my life is different. Some days I wake up and step one of the day is difficult to make. Other days I am reminded when I have to take massive amounts of medicine. I am reminded that I am walking on a tight rope trying to balance a normal life with my family and actually fighting for my life every moment of ever day. One slip and everything can change in a single moment.
I want you to know I do not feel sorry for myself. I have bad days and I cry to my mama at times but I am strong and after the tears flow I pick myself up and keep pushing through. My family worries enough I don't want them to have to worry more than they already do. Yes, this is me being stubborn sometimes but at the same time it is helping me keep a small amount of my self worth. Over the last six months we have had to make some very hard choices in life. I filed for short term disability and because of that I was sent a letter termination. I have been poked and prodded so much over the last six months that the bruising from needles and iv's would get so bad that I looked as if I was a drug user. You can see where self worth at this point is so important to me. I do not want to be a patient to my loved ones. I do not want people to feel as if they are my caretakers because as soon as I see that I see myself in their eyes as someone who is sick. I see heart break in their eyes and the pain they suffer also suffer from throughout the life of my disease. They didn't choose this and neither did I. How do you be "normal" in a situation like this? When does the heartbreak end? When do I feel better? When do my family members stop worrying?
I know that no one can answer my questions. I know that sometimes I will be a patient and there will be times my loved ones will be my caretakers. I just want a small amount of normalcy squeezed into this world of disease I live in. At times I feel as if I am in this dark tunnel just felling around for something to grab on to and most of the time not finding it. I see the light at the end of the tunnel but the closer I think I am getting the smaller the light gets. In my mind I stomp my feet and I scream! I am a 33 year old adult who will stomp her feet! Then I stop and remember that there is a reason for all of this. As I have mentioned before there is a reason I suffer and maybe some day my suffering will lead to a cure for my diseases. Maybe someone else will not have to wake up in pain. Maybe someone who would have suffered forever can lead a normal life.
So, I pick myself up and look around and in the dark tunnel I feel for the tight rope I fell of off. I slowly crawl back up. I close my eyes and focus on balancing and take one step after another because I know with each step I take the closer we come to finding new treatments and even cures that will help those suffering. I feel that alone is worth balancing for.
It is that time of the year when kids reach into their imaginations and pull something amazing out to be for just one day........ Halloween! Little boys want to be super heroes and little girls want to be princesses. There are little witches and goblins running around and a sense of excitement fills the fall crisp air. At the end of the night they sit down to see just how lucky they were this year! They make piles after piles, bargain with their candy to take their favorite treat from another ones candy pile! They eat as much as they can until they hear those shattering words..........time to put the candy up and get into bed because you still have school tomorrow. Booooooooooooooo!!!!!!!!!!!!! After sneaking that one last piece they put away their special costume and become themselves again. The good part is that they have an ENTIRE year to figure out what they will be next year and it has to be better than this year!!!!!!!
For those of us suffering from autoimmune diseases and other diseases that cause so much pain and anguish we have developed a super power of our own. Over time it seems that we have built up a tolerance when it comes to the pain we encounter in our everyday lives. Our tolerance is higher than most and illnesses tend to hit us harder but our body has adapted and hence our super power was born! Most people think about this and think it is great! You stub your toe and it doesn't throb, you burn yourself on the oven but you never even felt it and internally aches and pains are just part of our day. We have adapted to a very hostile environment and I am thankful for that,well, at least most of the time.
You see this super power allows us not to feel as much pain as most people but that also means our bodies natural alerting system has kinda of lost its shine. For me personally I feel pain from sun up to sun down. I may have a moment of relief when I take my nightly medications but if my body really decides to show off the relief never finds me and this results in long nights for both Tim and I. I am rolling around in pain and Tim is trying everything he can to make me feel just a little bit better so sleep can finally reach us both. It is hard and miserable at times. I also suffer from lung issues and I will tell you that I do not remember what it is like to breathe normally. Oral medication and inhalers are a part of my everyday life and without them I would have a very hard time with the most simple of tasks, breathing. These super powers of mine don't seem so super when you really think about it. It actually frightens me when I stop and think to myself that my body really does not have a way of showing me if I am injured or if my disease is acting up.
I have been dealing with this fear quite a bit lately and it has been hard on me and it has been very hard on my loved ones. It first started one Sunday morning. I went for a bike ride and went back to my friends house and I went back to sleep for a few hours. When I woke up it felt as if someone was pulling a belt tighter and tighter around the upper part of my chest. This pressure was making breathing very difficult and one thing I have learned over the life of my super powers is that you do not mess around when it comes to breathing! So, I went to the hospital and after seven hours of testing we found out I had pneumonia in the upper lobe in the left lung. I was shocked! I always thought pneumonia made you very sick and you would know if you had it or not. How could I not know that I had pneumonia? It was because of my super powers except these powers did not feel so super at this point.
My family wondered how I had let it get so bad. I tried to explain to them that I don't remember what it feels like to take a deep breath in and feel it throughout my lungs or feel the aches and pains of just a normal infection such as pneumonia My body has grown accustomed to the environment it has found itself in. It has had to overcompensate when it comes to pain so many years ago when all of this started and that has lead to my inability to differentiate between pain you get from exercising too much or if my Lupus is flaring and causing tremendous joint pain. I have no clue at this point in my life and my poor body is so out of wack that I am not sure if I ever will be able to have a normal pain threshold again or if these super powers are here to stay. All I know is that I don't feel so super today and these super powers that have been bestowed upon me can just go away! I would like to pack them in a box and send them to farthest point on Earth! After all of this I think I will have more luck using one of those eight ball fortune teller toys to guide me through life. It may not be accurate but I think it would be much more fun than having super powers!!!!!!
Breathe in and breathe out...........repeat this for a few minutes and when you are done you will feel a small sense of relaxation. You are breathing in and out and are clearing your lungs and making room for new air. You will feel your lungs fill up to the very bottom and you will feel them clear out, every inch of them. Our lungs play such an obvious role in our lives. If you would ask me what are the two main organs you want to continue to work I would of course choose my heart and then my lungs! I know there are other very important aspects of our bodies we need in order to survive but they are a little more hidden and go unnoticed quite a bit. Sorry little worker bits I will start thinking about you too!!!!!!!!!!
My little lungs are giving me and my doctors quite a bit of trouble right now. It has been one year since I came home from vacation with strep throat. That was tough!!!!! I ran a fever of 102 all the way up to 104. I begged to be taken to the hospital so many times but the doctors kept telling Tim this was normal for strep throat and it will pass. Of course it passed but it took two doses of antibiotics to run it out of its home. I was miserable and it seemed to set of a horrible year.
I have been battling with lung infections and other issues over the last year. I spent only three weeks off of antibiotics and steroids and those three weeks were not one after the other. I just figured it was a bad year for me and I put my head down and tried to fight through all of it. What happens when you run out of fight? I was always brave but there have been moments where I could not keep fighting I was exhausted and wondered what I was fighting for. I spent almost the entire year in bed, lost my job and went on short term disability and I am actually now sick of being in pj's all the time (I must tell you I LOVE PJ'S)! My friends would go out to play and I would relive their adventures through stories and pictures but it did not always patch my heart and there were times it just kept breaking over and over again. In my heart I knew it was time to seek more help and receive the twentieth second opinion. It was time to play with the big hitters and that is what I did and I am still doing. I may not always be up to the fight but those hungry doctors have enough fight for me!
These big hitters consist of many Mayo doctors in soooooo many specialties. I move from one to the other in search of that one home run! My biggest hitter these days has been my pulmonologist. He is trying to find out what my lungs are struggling so often. He thought that the constant cough and hoarseness was due to GRED, fancy name for acid reflux. I had the little chip planted last week and there was no acid reflux occurring. Darn.....next! I always knew it had nothing to do with GERD but the only way I could prove it was going through this test. Now I feel as if he is going to be forced to look a little deeper and even outside of the box.
Remember that breathing you did when you first started reading??? Well I seem to have a case of pneumonia that loves my lungs and it wants to live there forever!!!!! You see the pneumonia is not my issue at this point......my issue is that my breathing is so labored that I had no idea I had pneumonia. I have not been able to breathe normally for some time. I figured it was an asthma attack but nope, you can't argue with pictures. It was there right the right lung in the upper right lobe. They gave me a dose of antibiotics right there in the hospital and sent me on my way with another ten day supply.
Everything continued to move in the right direction until Tuesday I felt a little more tight in the chest and I started to cough but I figured it was just my bodies way of healing itself after surgery. I made it through the weekend but by Monday I could not ignore it any longer. I packed myself up in the car and headed to magical land of the hospital. Hours later the good ole doc came in to see us. Lab work looked good but there was now a spot on the left lung right in the middle. She is not sure if it is the old pneumonia trying to heal or if we are dealing with it all over again. One thing she new was that me going back on antibiotics was actually getting to the point of being dangerous for my system. We decided on three days of steroid and an opiod that actually helps suppress the cough. She looked at me and said that she didn't think she could help me and she was honest when she told us they are not prepared to deal with this kind of situation. She just wanted to make me as comfy as possible until I see the pulmulogist.
I am afraid right now. One of my two organs I picked is making me hurt and feel sad. I want those lungs working 100% and what are these spots dancing around in my lungs? Why is it so hard to breathe and why must I cough so much that I almost pee myself? I am laughing about it too!!!!!! I want to ride my bike and be able to just leave my house. I want to have slumber parties with my girlfriends and snuggle with the little ones. Hey, maybe a puppy will help!!!!! I just want what the majority of people have, the ability to breathe. I know I will never been normal and there are some things I have to sacrifice in order to stay as healthy as possible and I am coming to terms with all of that but I want to be able to breathe. I need to breathe!
So, tonight when you are lying down and relaxing I want you to concentrate on your breath and how it lulls you to sleep and as you drift off into dream land please send me just one of your breaths. If enough people do this maybe my lungs will fill up, kick the unwanted house guest out and give me enough energy to leave my bed. Just make sure you brush your teeth before sending me your breath! What?!?!?!?!?! I am still a girl!!!!!
Sorry this is just another update and not really a post but I know it is necessary so that all of you will know I am doing fine after the past few days!
I went in on Monday morning and was checked into the hospital for an MRI/MRA of the brain. They had me all ready and I was in position and I started to panic looking into the tunnel He asked if I would like a wash cloth over my eyes because that tends to help people. I said we can try it and so he made it so I could not hear or see anything and boy that did not sit well with me!!!!!! They put that thing over your head that locks you into place and I told him I needed that crazy washcloth off! I needed to have a little sense of control and so this way I could open my eyes if needed. So I went into the tube and just tried my best to meditate and breathe so that my body would stay very still. OH MY GOODNESS DID IT WORK! I actually fell asleep in the tube during this test! I was very excited about that!!!!!
I checked out of the hospital and headed to the Mayo Clinic for the next procedure. I checked in and had sometime to visit with my friend Connie. Finally they brought me back, hooked me up to a heart monitor and took my vitals. I went in to the room and before I knew it I was sleeping peacefully Once the procedure was done it took about an hour to really wake up so that I could go home. They ended up taking a piece of my stomach, small intestines, large intestines and they planted a chip in my esophagus to measure the ph levels over forty eight hours. I could only feel it a bit when I ate the first few times and after that I haven't even noticed it! I turned in the device with all the data yesterday and the chip should slough off and pass within seven days. I thought that was pretty interesting!
Again, everyone I encountered throughout the entire day was amazing! The nursing staff put me at ease and made the whole thing a lot easier to handle. I am so thankful that I was surrounded by these amazing people who donate their time to patient care. I would have cried at least four times if they were not there to make me laugh!
All of that is over and we will soon know the results of the MRI/MRA, biopsy results and ph level results. Of course I will let everyone know once we hear something. I do want to say thank you for all of my friends and family who checked in with me through out the process. Surgical procedures are not fun and can be very scary but just knowing I was surrounded by love and support gave me a reason to fight through all of this. It is all over for now and I am so excited that I have a small window of resting and relaxation before I head back in for more tests and procedures.
Until them I am planting myself in Albuquerque and spending as much time with Tim as I can before I have to head back to Phoenix! He is home, I am well and nothing else seems to matter!
Hello everyone! This will not be a normal post from me but instead an update. I saw the neurologist at Mayo this week and I wanted to let everyone know what the next step in this long drawn out journey is.
The neurologist was someone I did not expect! He was fantastic! I knew he would be but all of you who deal with specialist will agree that most of the time they are so dialed into their specialty and it leaves little room for bedside manner. This doctor had it all! He sat with me for an hour just talking about what is going on with me now, in the past and going over my family history. I truly left that office knowing for once I was in good hands. This does not mean he will tell me anything new but I feel as if the effort he puts into it is going to be enormous!
After all the discussing he decided that we need to get a MRI and a MRA of the brain and upper spinal cord. He also went on to explain that those little flashes I see on the outer edge of my peripheral vision, loosing peripheral vision and the sinus pressure and pain are all migraines. They are a tough kind only because they don't produce any pain and so following them are a bit harder because most people only go seek medical advice when there is significant pain. He also explained to me that due to the fact I had a parent with aneurysms it makes me more likely that it could also be a possibility for me. He doesn't think I am suffering from anything like that but we need to monitor it yearly. The white matter on by brain is actually what is left after a migraine. This is the result of having oxygen deprived in these areas. It is basically scarring and can not be reversed.
The neurologist also is very concerned about my high blood pressure. He said at my age I should not be diagnosed with hypertension until all other avenues are exhausted. In order to rule out everything it will take a nephrologist at this point. There will be lots of tests involving the kidneys and adrenal glands in November. I have had high blood pressure since my mid twenties and no one ever seemed to question it so for me it will be very interesting to see what, if anything, they find!
Where does all of that leave us? Well, I check in Monday morning at 6:30 for my MRI and MRA at the hospital. This will take a few hours. After that we will head to the clinic for minor surgery. They will be implanting a devise in my esophagus to measure the ph level for 48 hours. They will also be taking a biopsy of the stomach, small intestines and large intestines This is to rule out celiac disease. Monday is going to be long and exhausting but I can handle it! On Wednesday they will turn off the device implanted and it will dissolve I will see the pulmologist on November 9th, nephrologist on November 17th and the neurologist the first week of December.
Whew! That is a lot and I have to admit that this process is really taking its toll on my body. I will have two IV's Monday alone! I truly feel that this testing will go into 2013 but hopefully after that it will be a very healthy year! Tim keeps reminding me that with every appointment brings us closer to some new answers and that keeps me going along with all the support from my family and friends. I will update everyone through my blog over the nest few months because there is way toooooooo much to say! Again thank you all for your love and support over the last six months and in the future!
We can all remember being cooped up in that classroom every morning. We try our very best to concentrate on what our teachers are saying but something is pulling at our young minds. Is it hunger? Is it reading groups? NO, ITS RECESS!!!!!!! We all used to line up and the teacher would tell us to stand very still. There was no pushing, tugging or ditching in front of others. Oh how hard it was to stand still! We all had to have looked like we had ants in ALL of our pants! Finally the sweet bell would ring and we would be released out into the bright sunshine of morning recess!
Morning recess was the best! It was the perfect time where there would still be a lingering coolness from the morning dew that remained on the grass but the sun was moving closer to its peak so the warmth filled you from head to toe. We started off with jackets but by the end of recess all of our jackets were thrown in this pile by the door. Well, today I got my recess! I am no longer sentenced to bed rest and freedom awaits me outside!!!!! Wooooooo hooooooo!!!!!!!
Tomorrow morning I will start this recess by waking up when the moon still lights our way and Lisa and I will walk little Emma around the golf course. Soon I will be riding my bike again and enjoying that moment when the sun rises and pushes the moon back to its sleeping position! I know Tim will be reading this and I PROMISE I will go slow and still rest the majority of the day. I will listen to my body and its warning aches and pains telling me I have been pushing it just a little tooooooo far. I will go to bed early so I am not rubbing my eyes on our walk. I promise I will only go on the short loops when I start my bike riding BUT eventually my destination will be Krya and Brandt's to visit baby Austin in the morning!
You see, I saw my new rheumatologist today. At first visit she seems like a wonderful doctor who really listed to me and has made adjustments in the medication to make sure I stay as comfy as my body will allow. We are at the maintaining phase of my Lupus so shot day will have to stay at 5 cc every Thursday. Hey, that is better than 7 cc!!!!!!!! We will take it!!!!!! Maintenance will only last so long and it is inevitable that Lupus will wake up and join us once again at the dinner table BUT when that occurs Benlysta is the way we will go. That is reassuring for me and my family and friends. We have a plan of attach once we need it!
So, while we are in this maintaining phase I am going to run out every morning with ants in my pants. I will breathe in the cool air and feel the warm sun from head to toe! In my mind I will be making a movie that I can play over and over when the yucks reoccur and all I do is basically watch paint dry. I will visit Krya and baby Austin as much as I can and enjoy the morning walks with Lisa and Emma. This may not last forever but it is perfect for right now!
As the new week begins and Monday comes to an end another week of bed rest starts. This week is filled with doctors appointment's on Tuesday and Thursdays but it seems that will be the only time I am able to spend time out of the confinements of my own room. I say my own room because walking to the kitchen or even to the car causes a massive coughing attack and an out of breath moment I want to avoid at all costs. So, unless I am in the doctors office I will be found in my bed covered in a blue fluffy blanket surrounded by sock monkeys and pictures of my family and friends.
It is funny how being stuck in bed you still have a favorite time of day. For me my most favorite time is when everyone starts coming home for the day. I hear people opening doors, greeting their loved ones and playing with their pups. Both of our neighbors have HUGE dogs and every night you can hear the excitement in their homes. The dog can not decide which way to go!!!!! Does he go up the stairs away from his loved ones or should he circle them in the small entry way? It is something so simple but so beautiful.
My neighbors used to annoy me to pieces! They would play their tv, music, video games, whatever it was until really late at night. Oh how angry I used to get! They were intruding on my calm and quiet night! I actually welcome these sounds now and the later they play them the better! Someday's this is the only tie I have to actually someone else living and breathing. I lay here in bed and try to guess exactly what it is I am hearing. Do I recognize this one? Does it have reoccurring beats that you could associate with video games or is that a crescendo that you can easily see occurring at the best part of a movie? Who knows!
Today was a tougher day than normal. I can normally pass the time away in bed by reading, watching movies and even coloring......yes, I said coloring! Today was a bit different I ended up sleeping in until 11:30 am. Do you ever have those dreams that are so real you wake up knowing that is what happened? I had one of those today. I had a normal dream about a normal day Tim and I would normally have and I woke up expecting him to be here until the massive amount of covers to the right of me. Once I really woke up I understood that was part of my dream and he was still in Chicago and I was still in bed resting. Everything was just off after that. I started running another fever and my cough is turning in to a bark and the dogs next door barked at me! Ok, this made me laugh! I just pictured this dog on the other side of the wall sleeping and he hears another dogs bark and he is alarmed BUT it was actually me, hehehehehehe!!!!!!!! This could turn into a game!
In the next hour I will start to hear the familiar sounds of everyone's days coming to an end. I will smell dinners being made and of course I will hear the eagerness of the family pets greeting their owners. I will fall asleep to thumps of music as I try to figure out exactly what the thumps are saying and tomorrow I will wake up to another quiet day in bed. I will watch the clock again until the end of the day approaches and my favorite part of the day begins.
