Osteoporosis Won't Break Me

  Osteoporosis. That is an interesting word to hear at 37 years old. That's what I got. I had to do a bone density scan last week. Not just because my broken foot is taking its sweet time to heal, but I am also very thin, malnourished, and I have ovarian failure. Yup. You read that right too. Ovarian failure. These are two things someone in their thirties rarely has to think about. This is now what I face. Although a little frightening, I see this challenge as a learning opportunity. It isn't a great deal of fun for a man to read about ovaries so I will keep that short and simple.

  For years I have had irregular periods. For a few years I was treated for ovarian cysts and that worked out great. When we moved from a metropolitan area in Texas to a rural area of New Mexico I kind of brushed it off not wanting to find an OB-GYN because, let's face it, who does? After 2 years and a serious lack of periods I finally broke down. I would love not to have one, but I am smart enough to know it is not good to not have them. There is not a chance of pregnancy. I had my tubes tied back in 2011 due to my fragile health. I found an OB-GYN. After a detailed exam and discussion she knew things might be more complicated. She ran some blood work and called back a few weeks later to notify me that I have ovarian failure. What's that?

  Well, I had been warned since my early thirties that many auto-immune diseases cause early menopause. My assumption was that may be what is causing me to be irregular. I have never heard of ovarian failure.  The Mayo Clinic refers to it as ovarian insufficiency. That word again, "insufficiency". Seems to be one of my running themes. Basically, my ovaries are not producing enough estrogen and/or eggs. This is not normal for women under 40. It is different from menopause in that women with ovarian failure or insufficiency can have periods on and off and possibly even get pregnant during this time (not me). Women who have premature menopause  stop having periods completely. Glad we got that sorted out. So the next question is what do we do about that?

  The doctor talked about hormone therapy and a few other things. All of which I listened to but barely understood. This is not in my wheel house and I have never even researched them. I am such an information junkie, I am usually ahead of the curve. She then explained she wanted to consult with an endocrinologist (specializes in hormone and hormone glands) as well as my primary care physician to go over options for any possible treatment. Her concern, of course, was starting something that may be dangerous considering my complex medical history. She heard I broke some bones in my foot so she decided to have a bone density scan done.

  I had to go to the local hospital. All diagnostic imaging is done there in our small town. That is a scary experience during COVID and I have been there several times since I broke my foot for different scans. A side note to this is the woman who checked me in was not wearing a mask. It is state mandated and it is a hospital. That made me uncomfortable. The scan took hardly any time. She did have to take my official height. I am proud to say I am officially 5'3". I am the tall one in my family haha Due to the pandemic, results get to the doctors faster. Radiologists are not having to do as much since healthcare is focused on necessity right now. The very next day the OB-GYN called to let me know I have osteoporosis.

  Now that was not what I was expecting. I am pretty good at being prepared for a new diagnosis. My gut instincts are good at knowing even before I consciously know myself.  Not this time. Because it is not something that was on my radar and no one in my family has really talked about it, I honestly had no concrete idea on what the different bone diseases/disorders meant. She explained and I listened, but I can't relay what she said. I don't think it registered at the time. Again, she wanted to consult with my endo and primary care doctor before starting any treatment, but some treatment is needed. I do take a calcium supplement and vitamin D because I do not absorb them naturally. She believes some hormone treatment may be necessary at this point.

  Osteoporosis literally means porous bone. Bones do have a blood supply. They also have two very important cells called osteoblasts and osteoclasts. The osteoblasts break bones down. Osteoclasts rebuild. Diabetics already produce more osteoblasts than osteoclasts which is why it takes longer for our bones to heal along with poor circulation. In osteoporosis there are also more osteoblasts than osteoclasts causing the body to lose more bone than it can reproduce. This makes the bones porous and brittle. Sometimes something as little as a sneeze or minor bump can cause a bone to break. The main concerns are the spine, hips, and wrists. I have read that even just sitting there a vertebrae may crumble. How do you protect yourself when you are a 37 year old mother?

  Strength training, impact exercises, and nutrition. So, we know I can only do so much nutrition wise. I eat as healthy as I can within my limitations. My body does not absorb all nutrients. I take supplements to help, but it is not a fix all. I am limited in protein intake due to my gastroparesis. Most of us know, protein is crucial for repair and development of the body. That one gets me. I have always exercised. In the past ten years it has really only consisted of long walks and yoga. Since my broken foot I have had to become more creative. I do a lot of floor or chair work which really strengthens your arms, abs, butt, hips, and back. Little did I know, that strength training is exactly what is necessary for osteoporosis. Score one for Lauren. The impact exercises will come in due time. They are things like walking, running, and jumping. But at least I know. Now, I can be sure to do a variety of exercises even beyond my foot injury. 

  I have mentioned this before, but I found some great content on YouTube for "hurt foot" workouts. Donovan Green (Dr. Oz's trainer) and Caroline Jordan are my two favorites. They make chair cardio videos. Caroline also makes floor barre and total body non-weight bearing workouts. I have come to really enjoy them. I used to be a long distance runner and basketball player. These workouts get me to that level of intensity. Who would've thought? Walking and yoga are peaceful, but nothing beats a runners' high. I am strengthening muscles I didn't know I had yet are so crucial to preventing injury. They have even gotten my shoulder feeling great. I had a labral tear last August and have struggled through physical therapy and more to rehab. These exercises really strengthen your posture muscles in turn strengthening your shoulders. I highly suggest you try it before you knock it, especially during this pandemic. It will reduce anxiety, help you strengthen, possibly lose weight (if needed), and as my son puts it, "It's somethin' to do". I recruited him for my evening routines. It has changed my life for the better.

  That is what is so cool. We all say, "there is always a rainbow at the end of a storm" or "the sun will come out tomorrow" yet it is difficult to really internalize. We also know there is power in positive thinking. Well, the shoulder injury and then the foot injury seemed horrible, but have now proven to actually be a blessing. They have made me really slow down. I tend to push myself beyond my limits then pay for it. These injuries have reset my mind reminding me to not push so hard. They also brought me to new exercises. I learned I really enjoy things I normally passed up. That has made me rethink trying other new things in other aspects of my life, These two trainers are incredible at educating while not judging. They are motivational. I have learned to be compassionate with myself. I am constantly reminded to be grateful for how incredible the human body is. It is one of the rare things that can heal and get stronger. I am better at pushing away negativity. I am better at focusing on my health. That helps all else fall in to place. 

  As I sit here with my foot propped up and no end in sight, I do feel thankful. I am excited for the day I can walk again because that just means I can add more to my arsenal. I will never get bored with the variety of exercises I can do. I may not be competing anymore, but I think I am stronger than when I was. I talk about exercise so much because I love it. Movement is medicine. Having a bad day> Exercise and get endorphines. Feeling tired? Exercise and get endorphines. Bored? Don't eat. Get up and move. The endorphine rush is real. The best natural remedy on earth. As long as you are doing it right and for the right reasons, there are only good side effects. Even as sick as I am, I think I was born with far too much energy and I have to get it out some way. 

So, welcome osteoporosis and ovarian failure. I am here to fight and win. 

Surfing The Wave

Welcome back to the dramatic life of Lauren the Great. I recently talked about my one year birthday with the Enterra gastric stimulator. This device is starting to spread throughout the nation, and I am so glad for that opportunity. So many people need this device, whether it be to gain weight or lose weight. Yes, they can actually adjust it to help with obesity. I have heard my hospital has implanted a good amount since my own. I recently spoke with my diabetic educator in New Mexico and she said they are implanting them there as well. That warms my heart more than you can imagine. I like to stroke my ego and say that I promoted it a lot which gained recognition for Medtronic, the manufacturer. Maybe soon it will be considered a treatment option as opposed to a humanitarian device. The rest of my post may seem to counteract much of what I have talked about previously, but no one really can understand the immense impact it has had on my life as well as my family's.


I realize it has been some time since I last posted and I definitely fell off my routine. Again, life happens as well as emotions. This summer has been difficult with my health and hotter than a Texas summer (pun intended). Late April or early May a migraine struck. I have suffered migraines for years, but they seem to be progressing. I used to think people were being dramatic when they said they had one. It seemed like every time some one had a headache they would refer to it as a migraine. I have seen true sufferers and some dramatizations. Either way, mine I now believe and have drastically progressed in the last two years. I eventually, after many attempts of at home treatments doctor recommended, gave in and went to the emergency room for IV medications, also doctor recommended. That helped ease it a bit but within days it roared its ugly head more so than the dull ache I still had after the IV. Since then some days are dull and some days are debilitating, more often the latter. The heat certainly doesn't help.


There are so many triggers for a migraine and everyone has a different experience or reaction. I, myself, had no idea what my triggers were due to my denial of migraines existing. This was a test-in-the making that hit like a brick wall. I tried hydrating. I tried rest in a dark room, which actually helps me at least rest a little more comfortably. I knew my eye glass prescription was old because I was always squinting so I went to an ophthalmologist.  I need him more than an optometrist because he can check for diabetes complications of the eye, more specifically retinopathy. Luckily, I am good in that department. My prescription did change just a bit, but he also recognized some rigidity in my lenses. See, your eyes have lenses that are flexible so you can look far away and then look down at your phone or a book and your lenses adjust as you change your perception. Mine doesn't move that quickly. As a 31 year old woman, I need bifocals or trifocals for the no line lenses. I prefer to use glasses as opposed to contacts because I take them off throughout the day pretty often. It is also less maintenance in my opinion. Back to triggers, I tried cutting out foods I felt affected me. Lotions, laundry detergent, air fresheners as well because the smells can be a trigger. I avoid the sun. I consciously try not to squint or move too quickly. I try to keep my neck and back in the least taxing positions or movements. It seems like they are all triggers, including stress.


My neurologist has been seeing me frequently throughout the summer to try to get ahold of this unbreakable trend. At first she thought that we possibly went down on a medication, in an attempt to slowly change to a new medication seizure-wise, too quickly which can upset your nerves. A slight adjustment here, a slight adjustment there. That did not break this chronic migraine. We attempted emergency type medications. We moved on to some injectable medications because we thought absorption had been a factor, could still be. None of which seemed to help. Actually, the injectable gave me a rare side effect of severe drops in my blood sugar. Leave it to my body to head to the rarity and the blood sugar factor in a diabetic is not good. At my last appointment we agreed on a new approach, Botox, but she also told me some news I had and have trouble dealing with emotionally and physically.


In New Mexico I had been given "life timelines" several times. I had also been told I have an autonomic nervous system disorder. I always beat my "timelines" and will continue to break barriers. It did hit me a little harder this time around. I think I had myself on cloud nine and was in denial a bit. I was so glad to be in a new place with more food and life options, and I believed the stimulator's help with food intake would help my whole body. I still believe it is because it is blatantly obvious in terms of energy and symptoms due to gastroparesis. Hearing a "timeline" now knocked me down. Granted, hers was much longer than any previous and vague. It is bugging me a bit still, but I know my determination and tenacity. She has been talking about neuropathy over the last year, but never referring to it as "diabetic neuropathy". She explained to my husband that my neuropathy would cause personality changes, memory loss, and more that I cannot remember, but I can't totally contribute it to what she said. At this last appointment focused on my migraines and seizures, I brought up the fact that I have noticed some symptoms I couldn't explain.


For years, really around the time I got diabetes, I have had numbness and tingling in my extremities. When I would mention it, doctors and nutritionist would brush it off, saying it was too early in the disease to have diabetic neuropathy. In addition, my blood sugar control was too tight to allow the damage. Lately my balance is off. I do yoga about three times a week and am suddenly unable to do moves I have always conquered. That is frustrating and a little alarming. I have also been noticing more memory loss and trouble comprehending things I never struggled with before. Additionally, at the ER I had trouble doing the neurological exercises they often use for neurology patients. Days before, in a discussion with my husband, I was trying to count to four on my fingers. For some reason my hand was not cooperating. He had to physically move my fingers to show four. I felt silly about it all, but she was very serious. She explained that the neuropathy I have is an autonomic nervous system disorder and it is called peripheral neuropathy. This is not diabetic neuropathy, although I am at risk for that as well. Let's compare them along with fibromyalgia as well as I can with my limited knowledge.


Peripheral neuropathy affects the entire nervous system. It can be connected to diabetes, but mine was triggered at the on-set of diabetes or before. We believe before because pain and fatigue have been an issue for me for over a decade. It can be caused by many different factors which make it hard to pin point. Some of them include autoimmune diseases (I was diagnosed with Hashimoto's thyroiditis when I was 13, then the snowball began), diabetes, medications, alcoholism, trauma, pressure on a nerve, tumors, infections, vitamin deficiencies, hypothyroid, and connective tissue diseases. Many of which I have or had come across throughout my life. Determining the cause is not as important as trying to manage it. The damaged nerves can cause numbness, weakness, and pain throughout the body. The nerves in the peripheral nervous system or central nervous system send messages from the brain and spinal cord to all other parts of your body and back again. It can affect sensory nerves that receive messages like pain, heat, or even touch. It can affect your autonomic nervous system controlling most of the smooth muscles such as those involved with breathing, heart rate, as well as digestion. It can also affect motor nerves controlling how your muscles move. This will cause a wide range of symptoms. Mine include pain, weakness, fatigue, digestion problems, blood pressure and heart rate (mine are super low), lack of coordination, intolerance to hot or cold temperatures, and sensitivity to touch. These symptoms wax and wane, but reading my posts throughout gives you a good idea of the constant symptoms. Mine happens to be polyneuropathy meaning it affects more than one nerve.


Diabetic neuropathy is usually caused by high blood sugars over time. These blood sugars damage the nerves. Most commonly, it affects hands and feet. This cause pain and/or numbness. It can move on to other parts of the body such as the digestive tract, causing gastroparesis, bowel problems, urinary tract problems, and even move onto the heart, sometimes fatal. It can be avoided by managing blood sugars tightly. Some diabetics never suffer nerve damage.


Fibromyalgia can also be set off by trauma or infections and can be genetic. Researchers believe repeated nerve stimulation causes changes of chemicals in the brain. The abnormal increases in these chemicals may signal pain. This can also cause the brain to make a memory of pain signals often causing the body to be more sensitive to pain. Again, symptoms are similar to peripheral neuropathy, yet there is no damage to the nerves, only sensitivity. Women are more commonly affected. It can be genetic or related to a rheumatic disease, such as lupus or rheumatoid arthritis. Complications are usually lack of sleep due to pain, frustration, depression and anxiety from a misunderstood condition, and trouble focusing or completing tasks. It is often referred to as "fibro fog". So, you can see the connection with all three conditions.


It is certain that mine is peripheral neuropathy. That terrifies me. There is nothing they can do about it. Some medications manage the pain, tingling, or burning. I certainly do not expect a magic pill to fix all. I would prefer to not take any medications at all! She did some routine exercises in her office as well. I realized many of the tests I previously completed with little or no difficulty, I suddenly had trouble completing. In fact, on a funny note...or funny to me, I will absolutely fail a field sobriety check if ever pulled over for suspicion of DUI (I do not drink and haven't had the experience). I tried and tried to walk a straight line, one foot in front of the other, and stumble time and time again until she just moved me on to something else. I walk with a different gait than most people. I am not pigeon toed and have never had an unusual gait before. Now, I walk with my feet in a "V" shape. That, she explained, is unknowingly trying to keep balance. The memory and comprehension are just bonuses. Again, she repeated there is nothing she can do but monitor it. It will only progress.


At this point it is important to stay alert to the symptoms. Because I am struggling with recognizing symptoms and they are only progressing she suggested a caretaker. There is no need for a live-in caretaker or even a 24 hour caretaker. I just need someone to check in with me and be available for the tough days or emergencies. I am often alone with my son so he has been taught who to call, how, and when. He will not be subjected to being my caretaker. He is a kid who needs to be a kid. I am sad he has to witness and live this volatile life with me. It has its bonuses, however.


He is wise beyond his years. He is compassionate, empathetic, and caring. He is sensitive, which can cause problems especially for a child who is eight years old. He actually comes home from school with his feelings hurt by something a peer said or did during the day. He can't understand how they can be so mean. He can't understand why they do so many things they do. It is just not in his realm of comprehension. It is amazing how he thinks about the world. He can teach us so much. He sees the world in such a magical way.


I saw my primary care physician just today. I lost weight, which makes me mad. I have been eating plenty. With the summer heat I have been enjoying vegan ice cream on a very regular basis as well as these giant soft, gluten free, vegan chocolate chip cookies. Both have always been a weakness my entire life and now I have found them in my diet allowances. Woohoo. I cannot believe I am still struggling with weight. An issue many people would love to have, but not to the point of being underweight. Believe it or not, under weight people feel similar self consciousness as over weight people. My primary is concerned about my heart rate and blood pressure. I am now instructed to monitor my blood pressure and heart rate much like I do my blood sugars. I have been having these rushes of faintness. I have not lost consciousness completely and I am glad for that advantage. This comes with cold sweats and anxiety or panic. I think my blood sugar is low because the symptoms are similar, but when I check it is fine. She believes this is a result of low blood pressure, and the symptoms come on so quickly because my blood pressure has dropped quickly. I have been worried it may trigger a seizure. Luckily that has not been the case. She said there is a few medications that can help raise blood pressure, but I would like to avoid additional medications. She still suggested what she called " a benign" medication meaning less side effects. We will see how this turns out. I pray no medication is needed and lifestyle changes can possibly help.


With all this I have been so overwhelmed. The fear of what my body is doing on the inside. So many what if's. I have relaxed a great deal just having a tangible reason for what is happening. The what if's are lessening knowing that there is no concrete path. Everyone is affected differently. A doctor is only as smart as the information they have learned. The body is so much more complicated. The body knows itself better than any doctor. As I mentioned earlier, I have broken barriers doctors said would not happen. I have a determination to move forward. I see no reason why I should be concerned about leaving this earth when I know all of us only get so many trips around the sun. Enjoy the sun while we have it, right? My mission drove me to pistachios, ice cream, and puffs which are similar to Cheetos puffs (my old fave). My stomach can only fit so much as anyone else's, so work with what we got. Food, sometimes, is a fix all. The management will continue and life goes on. Focus on life not the management of the unmentionables. I need to give the diseases a collective name like......Bertha, and only refer to them as that name. "Bertha is on fire today" or "Bertha has been out of sight for a while" or "eh, Bertha has crashed my party" or happily "I beat Bertha to the punch today". Yep, from now on. Make light of things. Laughter is the best medicine. That and distraction. Loving it.


I do want to stress that this blog is not only about me. I share the information I know and my experiences. This blog is to connect with people. It is for me to gain knowledge from others. It is to share our experiences and learn. It is a place to be vulnerable yet vindicated. It is therapeutic for me. I don't share a lot of information vocally, but can lay it all out here. I don't have a road map for life. This is where I help guide my thoughts and actions. It is meant to bring joy and be open to new perspectives. I certainly do not want or mean to be a downer and believe me when I say I am happy overall. I have a great support system. I laugh and enjoy my son, music, and sports (yay football season, basketball soon to come). Everyone gets down. Everyone gets worrisome news. Life is about surfing the wave.

The Void ( A Tribute)

I really don't know where to begin...except at the beginning.  Two days ago we all got a call that none of us expected.  My uncle, Boyd Lunsford, had suffered a heart attack over night.  From those early morning hours until late that morning we all collectively prayed and cried, yet all of us geographically far from one another.  Many of my family members have built their lives in Texas, particularly the Dallas/ Ft. Worth area, but some further south.  As many could, they rushed to be by his side and to be with family.  Unfortunately, we lost him late that morning.

I would like to put this into perspective for my readers.  A few blog posts back, June 2012 as a matter of fact, I wrote about my cousin who passed suddenly.  That was his daughter.  The third child he has lost in addition to a grandchild.  Then, in October of 2012, not even six months later his brother passed (another uncle of mine).   This recent loss, has again left our family shell shocked still healing from the open wounds we have been mending.  As all tragic things do, this got me to go deep inside myself.

This site was set up to discuss the daily joys and struggles of living with multiple auto immune disorders.  As we all know, one facet of our lives does not define us.  It is simply a piece of the puzzle that makes one whole.  I had been down with the flu since Friday.  My doctors prescribed Tamiflu as the flu can be dangerous to all individuals but especially for those with compromised immune systems.  By Monday, I felt almost no relief so back to the doctor I go and a new prescription is written for an antibiotic as I am also battling strep.  So when Tuesday morning rolled around I was in no mood for phone calls.  I ignored them.  Within a few minutes if not an hour I received an email from my sister.  That's where I got the news.  I quickly got in touch with family in Texas and stayed close to my phone waiting for the best possible news.  It certainly ended much differently than we all hoped and prayed.  In the end, however, I do feel that my uncle is where his heart may have been for some time now.  If nothing else, he no longer has the daily trials we all see.

The next morning, as sick as I had been, my adrenaline, anxiety, and grief would not let me rest.  I walked my son to school.  Even with his enormous imagination and joyful way of describing it along our walk, I still felt pent up emotion.  When I got home I took my dogs out for a short walk, knowing if I pushed myself too hard I would be in trouble, but I had to 'release'.  On that walk something happened to me.  It was particularly peaceful. 

I could vividly smell the April morning air in our small town, my uncle's home town and where he will be laid to rest with those who passed before.  I saw a beautiful bushel of purple flowers.  Purple is my favorite color and purple flowers hold a special place in my heart.  It's like a high dose of serenity.  My uncle was a spiritual man. Anytime he would visit home he would come by and talk to me or take me to visit with him at his hotel.  He always had a story to tell and it usually ended with spiritual wisdom. I felt that rushing through me as I walked along the canal with my dogs. I wondered how these past few months had been so difficult, but in times of extreme stress I can somehow get outside of myself and feel weightless.  I talked and talked to my uncle and before I knew it my heart felt a little lighter.

Now, days have passed, memories are rushing in and family is tying up loose ends.  Services have been scheduled and we are all just trying to cope.  Something resonates with me from that walk yesterday morning, alone with my thoughts and words to my uncle.  My roller coaster, my emotions and rationality ebbing and flowing, my sense of loneliness and feeling lost all has a reason.  There is a void in my life right now I never imagine would affect me so greatly.  My sister.

About 8 years ago my sister and her husband decided to follow their dreams.  They threw caution to the wind and moved from New Mexico (the only place my sister and I have called home) and moved to California.  They met in college.  I could try to pretend I understand what they do, wanted to do, or even got degrees for, but I don't.  All I know is from the time I can remember my sister wanted to live in LA and have something to do with the entertainment industry.  Luckily she found a match in college that suited her and off they went.  At the time I had just learned I was pregnant with my son.

I have to admit I was astonished.  I was amazed that all these years of talk had turned into reality.  I felt so happy that my sister was spitting on everyone who had doubted her along the way, and her ambition never wavered.  I was happy that she had married a man that had similar desires to her.  I was happy that he encouraged her and supported her in her dreams.  But I was devastated.  I was hurt that they had not consulted the little sister before making this HUGE decision (as all married couples should, right?!)  And to add fuel to my fire, this baby growing inside of me, I thought I could only carry with my sister there to hold my hand.  But I stood strong and put on a brave face as they loaded the Uhaul and drove away from the apartment complex we both lived in.  I could not be the thing that held her back.  I had to let go.

Time has passed.  My son was born.  My sister and brother in law are slowly but surely finding their footing (not exactly a "go to college and get a nice job" kind of field).  I have since been married and moved back to my hometown.  I have made friends and lost friends along the way.  The most trying of all has been my health, I must say.  I just recently noticed how much harder it is to keep picking myself up and dusting myself off to continue moving forward.  On that walk that morning after my uncle passed my light-bulb moment hit and I realized it's "The Void".

I have a void in my heart.  My sister.  I never thought of it completely or in the light it was shown to me on that walk, but I realized all that she meant to me.  As kids (she is my only biological sister) we were always together.  She, this pretty little prim and proper princess with acting coursing through her veins and I, this rough and tumble tom-boy never understanding a word she said.  We had our differences and our fights, or so I thought.  I remember the day my parents drove her to college and the second the car drove away from our house, I crumble to the floor in tears.  I thought, "What?! I thought you'd be the happiest to see her go.  What is all this?!" 

Once I got to college, I went to UNM just as she did and just three years behind her, we grew so much closer.  She became my best friend.  I felt similar sadness when she left for California, but I thought my sadness would be replaced by knowing she was where she really wanted to be.  I also thought I would grow to learn to live without her so close.  I never have.  Recently, that has become so unavoidably apparent.

She and I lost our father to complications of diabetes when we were young.  Before his passing, my parents had spilt so my sister and I traveled from NM to CA for visits.  After his passing we continued those trips to stay close with his family.  Although in our small town in NM we had different identities, anywhere else we went she was by my side.  Even in our town she had my back when I was too young and dumb to realize.  When she went off to college, I was starting a new school and found it difficult to find friends.  I realized back then, she was the good one at talking to people and analyzing situations.  I didn't know how to do it on my own, comfortably.  When I got to college, she was a veteran and walked me through everything from finding a place to live, a job, and teaching me about finances and my future.  I always thought she was too dramatic and grown up.  I always thought she worried too much.  I now know, she did it for the both of us........my entire life.

Now I am in NM and she is in CA.  This last year has been tumultuous for our close and extended families.  I recently upgraded to a smartphone (I am technically challenged and was trying to be the driving force holding the USPS open) and so she and I have been in better contact.  You know them Cali folk, all tied down to their gadgets and too busy for phone calls.  For a long time I resented our lack of communication until I got the smartphone and realized the different lifestyles these two states have.....well let's face it, I was living a little in the past.  These days we communicate as if we lived in the same town.

That morning walk I took, sick as a dog with my dogs just to clear my head.  That morning walk to come to grips with the sudden passing of an uncle I have always learned from.  He taught me or should I say showed me what I was really reaching out for all this time.  My sister.  My best friend.  My caretaker.  My financial advisor, possible lottery-winner coach, therapist, and punching bag. 

I have written recent posts about feeling down and out.  I have written recently how difficult it has been to open up about all of that as well as feeling like I had no where to turn.  I have recently, openly written about my sense of hopelessness and feeling lost.  God takes His time, but He really does have a plan for everything.  He really does carry you through the most difficult parts of life.  This time, I believe through my uncle, He touch me.  He hugged me.  He held me tight and told me the answer to the prayers I have been screaming for months and for years. 

It is not friends I need.  It is not that dream job I need.  It is not the degrees I came short of before falling too ill to finish that I need.  It is not the perfect husband or child that I need.  It is and never has been about possessions.  It is the one thing that has stayed strong, sturdy, faithful, loyal, and honest from my first breath.  My sister.  She really does complete me.

We are opposites in every aspect.  Our personalities are different.  Our styles are different.  Our passions are different.  Our approach on life is different.  Even our spiritual and faith ideas do not always match up.  Yet somehow, they do.  So well.  She makes my puzzle complete.  I know God has His plan and certainly is not done with me yet, but without my sister He would not be able to complete my puzzle.  He knew we needed each other.  And that is something I will hold on to for the rest of my life.

 

A Little Kindness

I had my consultation appointment with the general surgeon for the J-Tube insertion we have been talking about.  Let me just say that I am astonished.  I have had auto-immune diseases since I was in middle school.  I have seen countless doctors.  I went to college for a health care profession and worked with a few doctors.  I realize that doctors come from all different backgrounds and all go in to the profession for different reasons.  Somewhere along the way, whether in school or during their career, doctors often allow their egos to take control of their patient care.  I believe I am a clear picture of this in this particular situation.

I have at least 7 different health care providers following me currently.  I have, for years now, asked that they communicate because I am no expert.  I cannot always tell what symptom is a red flag or what disease it may be affecting.  They all assure me they are/will work together.  January 7th was the first day I heard about the J-Tube.  By January 11th, I was told it was the "general consensus" to go ahead with the feeding tube to sustain me until I could make it to Johns Hopkins Medical Center in Baltimore in May.  In my last post I mentioned how far away the consultation appointment seemed because the doctors who had spoken to me directly made this seem urgent.  I believed them because I know I have been force feeding myself uncomfortably for a while now.  I was just looking for respite.

Normally, I am an information junky.  If I get a diagnosis or a new treatment plan, I usually rush home and research it until I can find no new information.  This time I didn't.  This time I was just too overwhelmed and frightened to know what would come of all of this.  I decided instead to allow the doctors to do their job.  My plan was to pray, focus on my family, and put one foot in front of the other until it got easier to look up.  That's exactly what I did.  Throughout the month, I suffered, but I prayed endlessly for God to guide the doctors to make the best choice for me.  I prayed that God allow me to be open and accepting of the decisions the doctors make and remind me that the journey I am on is His plan.

January 29th rolls around and my nerves were at their highest.  I didn't sleep soundly the night before.  We walk into the appointment expecting to hear when surgery dates are set up, but we left blown away.  The surgeon explained that the state my digestive system is in is not suitable for a feeding tube.  It would be a temporary solution for a permanent problem that has the potential for making the current situation much worse.  You see, a J-Tube is normally inserted for a short period of time for people who may have difficulty swallowing or an acute injury.  My entire digestive tract is not working properly, so force feeding food directly into the intestine could damage it worse.  In addition, my immune system is attacking my system so he explained that cutting a hole in an intact intestine could lead to countless complications, including needing the feeding tube permanently while constantly addressing the complications.  That brings us to my gallbladder.

My primary care physician found calcifications on my gallbladder over a year ago.  At the time she sent me to the current gastroenterologist.  She has been insistent on getting it removed and thought with the feeding tube being inserted we could get it out at the same time.  I agreed because I feel like I have no room in my abdomen for what is currently there anyway, so I am all for taking out anything that may help.  The surgeon reiterated what the gastroenterologist said last year, he would not remove the gallbladder and submit my body to surgery due to fear of introducing infection.  His suggestion was an electrical gastric stimulator.

This sent my head spinning.  It was clear that these doctors had spent the last month hounding me with information about this feeding tube and the urgency for my blood sugars to get under control and my weight to go up all the while none of them actually communicating with each other or looking at the whole picture.  If just one of them had spent a little more time looking into the benefits versus risks of the feeding tube, they would have stopped the process dead in its tracks.  As I have looked further into this option of the feeding tube, I realize it was never a viable option for my situation to begin with.  How did 7 doctors overlook a referral for such a drastic yet dangerous "solution" for someone who has been nothing but compliant and continually in distress?

With all of that, I looked at the surgeon and told him, "I don't know where to go from here.  I have an appointment with Johns Hopkins in May, but what should I do for the next four months?"  I was feeling too betrayed by my other doctors and overlooked to turn to them for more help.  I was scared I may not make it the next four months with the little amount of food I have been taking in.  The surgeon said his office would research the stimulator, find out who does the placement, and get us referred there.  He explained it would need to be within driving distance for follow ups and calibrations so Johns Hopkins was not ideal for the management of the stimulator, but he certainly agreed I need to get to Johns Hopkins as soon as possible before my body declines even more.

So, with that information and money out of our pocket for a visit that was only more traumatizing than the 22 days that came before it, my husband and I walked out of the office.  In the car I broke down.  Not because I was disappointed I wasn't getting cut into, but because I had been pressured into this plan I was never really comfortable with to begin with only to find out it was more dangerous than what I am already going through.  It was also another slap in the face by reality of the magnitude of my illnesses and the havoc they are wreaking throughout my body.  By now it has been about a week and I have had some time to decompress.

I have done some minor research, but have made a decision.  I have looked into the closer facilities that have the technology for the placement of the electrical stimulator.  Luckily, there are a couple within driving distance and close to family members I would love to take advantage of, but I have to think of every possibility.  At this point, I have an appointment with a hospital who is ranked #3 in gastroenterology as well as specializes in research of Schmidt Syndrome (which the surgeon openly said he had never even heard of).  I feel that the best thing for myself and my family is to wait until I get to Johns Hopkins.

Let #3 and the immune specialists do their full work up.  Let them come up with the best treatment plan.  From there, I will ask them to delegate down to the closer locations.  There are a million possibilities, but what I do know is that I have been to two major educational hospitals and still have no real answers.  I am no longer willing to let doctors grasp for straws trying to solve this intricate puzzle.  I will not be a trophy for a doctor to hoist on to their mantel at the end of their career.  I will not be a pin cushion or guinea pig either.  I will live my life to the fullest every day that I am given.

In the meantime, my gastroenterologist changed up some medications in hopes that we can at least sustain the weight I have now until I get to Johns Hopkins.  I cannot tell you how many different times in the last few years, but certainly the last week, I have heard "Johns Hopkins is going to save your life."  That's a hard pill to swallow.  No one wants to hear that, but at the same time it gives me hope.

In light of all this turmoil, the donations have been rolling in.  I am so grateful to all the people out there who have heard my story and want to help.  Having the support of my husband and son in Maryland will make a world of difference.  Not worrying about finances while trying to get the treatment I need is a gift I can never repay.  But I think it is important to tell a story of an amazing little man that I believe God has put on this earth to teach us all a thing or two about life.

Last week my son received an invitation to a friend's birthday party.  He and this little boy have been friends since headstart.  They played soccer together and were in Taekwondo together.  They also attend the same school.  On the invitation it said, "Instead of gifts he would like for you to bring a monetary donation.  He is going to donate the money received, to a special friend."  This party was going to be held at a local pizza restaurant.  Not only was I feeling exhausted from the month I had had, the week I had had, but the last several parties I have taken my son to I have gotten sick.  My husband worked that night so I would certainly have to take this task on alone if need be.

I talked myself into it.  My son thinks the world of this little boy.  My son has been taken out of Taekwondo because of my health and has been house bound, other than school, the entire month of January.  I needed to let him have this.  I needed to let him be a kid and enjoy his friends.  I needed to push my exhaustion aside and try (again) to make it through without falling ill after.  Plus, I think the world of this little boy's family so I had to not let my health hold me back again.  This is my thought process often, health can only hold me back so far.

We went to the birthday party.  It was nice.  I love the pure innocent joy of children.  I love the brothers and sisters.  I love their excitement.  I love to see my son smile and laugh as if he has not a care in the world.  And that's what he did.  The birthday boy is so poised beyond his years, he stood on a chair at the end of present opening and thanked everyone for coming to celebrate his birthday.  He also thanked everyone for the donations.  I was just taken aback by him and his family and how the kindness seems to flow from them even in casual conversations.

As I was getting into our vehicle, helping my little man organize all the little goodies he had gotten at the party, someone rushes up behind me.  I turn to see the birthday boy and his mom in the dark, cold parking lot.  They handed me a box.  The mom explained to me that it was the birthday boy's decision, but that he had really wanted to help his friend out.  They had heard about our situation and the donations and wanted to help.  I just about lost control of myself, but I did not want to scare the birthday boy with tears.  I held my composure long enough to give him a BIG grateful hug and tell him how special he is.  I thanked them, I don't even know how many times, before I finally got into my vehicle and drove home.

I got home and told my husband the story.  We both broke down (in our own ways), but spent the next several hours- scratch that- the entire weekend talking about the amazing kindness and compassion this little seven year old holds.  This little boy is wise beyond his years.  He has a kindness in his heart and his eyes that is a true gift from God Himself.  I believe we all have so much to learn from this precious little angel.

This past Sunday, I donated a portion of the money he donated us to my church.  I always give an offering, but it is never much.  This time, I felt it was important to pay it forward.  Not just what this little boy had done for me, but for every single penny we have received from the pockets of others.  We do not deserve this money.  We have not worked for it.  We have nothing in return to offer for it.  But we need it and we asked.  Kind and generous folks are hearing our story and offering a helping hand.  Kindness is contagious.  Support is healing.  Love is never ending. 

I may be facing the most difficult calling of my life, but there is a reason.  I am being taught lessons everyday from unexpected places.  We do not suffer in vain.  If I do not come out of this on the other side on top, I will be a stepping stone or a mystery solver for the next sufferer.  My daily life may be difficult beyond comprehension (even my own), but my life is being molded as we speak.  I will come out of this so much wiser, hopefully more compassionate, and stronger than I ever thought possible.

And that one little boy opened my eyes to that more than I could have ever imagained before. Thank you!

let's get educated

I woke up this morning, jumped on my computer, and was taken aback by the enormous response I got to starting this blog.  Very exciting.  Changes need to be made, and the only way for that to happen is for people to aware and working together.

I thought I might give y'all some layman's definitions of all the confusing terminology.  Many of these diseases are not well know.  I am not a professional.  I am not a doctor or a scientist.  I just consider myself a professional patient.  I will post links to sites with professional/ scientific definitions. 

I'll start with Hashimoto's.  I was 13 when I got this diagnosis.  At the time, the cartoon Hunchback of Notre Dame was in theatres.  I always thought of the hunchback "Quasimodo" when I heard I had this.  It is an autoimmune disease of the thyroid gland.  Autoimmune diseases happen when your body's own immune system begins attacking healthy tissue instead of fighting invaders.  The soldiers are the antibodies.  Doctors can identify specific antibodies to diagnose different autoimmune diseases.  The thyroid gland produces hormones that help regulate many things in your body, primarily your metabolism. 

Next we move on to Type I Diabetes.  Also, an autoimmune disease.  Many people are familiar with diabetes in some sense because Type II is running amok.  These are two very different diseases.  Type I, formerly known as juvenile diabetes, is when the antibodies attack the beta cells in your pancreas that produce insulin.  Insulin is a hormone that controls blood sugar levels.  Type I diabetics require insulin injections on a daily basis.  I personally use a pump.  It is a device that has an infusion set that is attached to my abdominal area for a period of 3 days at a time.  It is the size of a pager, and it works very similar to a pancreas.  I just manually tell it what to do with buttons.  This is the greatest invention, in my opinion, because it prevents me from having to do multiple injections everyday.

The next diagnosis I heard was Interstitial Cystitis.  This is not something I would normally, openly talk about.  When it comes to health issues, however, there should be no shame.  No judge zone.  It is not our fault.  Again, this is an autoimmune disease.  In this case, the lining of your bladder is attacked.  This can reduce or destroy the mucus lining.  The bladder fills with urine, as every body's does, and without the protection of that lining, the acidity causes lesions and ulcers.  You could imagine, this is a painful process.  In some cases, nearly debilitating.  This disease actually goes through active times and times of remission.  Thankfully for me, I have been in remission for about 11 months at this point.  Remission can last anywhere from a few days to a few years.  Treatment is usually oral medication.

At this point, you may be thinking "do autoimmune diseases come in clusters?"  Well, some do.  Many patients with autoimmune disease have 2, 3 or 4 different diseases.  To my knowledge, that is the typical max.  In my case, overachiever that I am, I didn't stop at 3.  We fast forward to the diagnosis of epilepsy.  Epilepsy is not an autoimmune disease, however it is chronic.  That means I will have it for the rest of my life.  As are all the autoimmune diseases.  There is no cure.  Epilepsy is simply defined as having more than one recorded seizure in the span of one year with no obvious cause such as head trauma or high fever.  I personally have grand mal, petit mal, and partial complex seizures.  We have not found a cause at this point.

On to another autoimmune disease?  Yes, we are.  Celiac disease happens when antibodies attack the lining of the small intestine  causing damage when patients ingest gluten.  Gluten is a protein found in wheat, rye, and barley.  Celiac patients are warned to avoid oats, due to the fact that oats are usually processed in the same facility as the other grains.  There is a difference between an allergy to gluten, an intolerance to gluten, and full blown celiac disease.  Full blown celiac disease can cause severe reactions to the consumption of gluten.  A digestive issue that is certainly not fun!

Celiac disease can cause malnutrition to the point of effecting other body symptoms and creating widespread symptoms.  When these symptoms didn't slow even with eliminating gluten completely, it was determined that I definitely had a connective tissue disease.  It has been classified as undifferentiated, mixed, and full blown lupus.  Depending on the doctor and the test results.  It is considered a rheumatological disease.  That covers many autoimmune disease.  Rheumatological diseases are more difficult to identify because the antibodies are not always present when patients are tested.  It is usually a combination of signs, symptoms, and blood tests that give the diagnosis.  Whatever you call it, a connective tissue disease is just what it sounds like.  Any connective tissue in your body (skin, bones, ligaments, tendons, etc.) can be attacked and damaged.  Treatment is usually steroids, anti-inflammatory medications, anti malaria drugs, or immunosuppressants.  This is where things get complicated.  Steroids can greatly affect blood sugar so they are not recommended for diabetics.  Anti-inflammatory medications usually cause some sort of digestive reaction so celiac patients cannot use them.  It can cause ulcers, stomach bleeding, and even cancer.  Immunosuppressants can cause liver and kidney damage so they are not typically recommended for lupus patients or diabetics.  So I currently take an anti malaria medication.  I am not sure what the science behind it is, but it seems to slow symptoms and make them bearable.  Whew, I'm getting tired just laying this all out.  Hahaha

In the mix of all that I was diagnosed with an infection I mentioned yesterday called disseminated histoplasmosis.  Please read this whole paragraph.  I know what my initial reaction to the explanation was, and it was not pleasant.  Histoplasmosis is a fungus.  Mold and fungus spores fill our breathing air everyday.  We inhale these all the time.  Most often they are filtered out or the bodies immune system attacks them before we even know we've inhaled them.  Often time healthy people will get a cold or chest congestion for about 2 weeks if they get histoplasmosis, but the body deals with it.  In a person with a suppressed or compromised immune system it can be much worse.  The fungus gets inhaled into the lungs and begins to grow spores.  Eventually it spreads throughout the body, dissemination.  It is not contagious.  It can cause brain damage, lung problems, spinal problems, skin lesions, etc.  The treatment usually consists of a strong anti fungal taken for about 1 year.  There is a chance of relapse after the year of treatment, but that is rare.

We move on to the final diagnosis of Pernicious Anemia.  This apparently is when antibodies attack the lining of the stomach and prevent the body from absorbing vitamin B12.  B12 is important for the central nervous system.  We get b12 from animal products mostly.  With a deficiency, patients feel tired and weak.  They often have nausea and vomiting because the nerves are being damaged in the stomach lining.  With B12 injections, these symptoms usually disappear fairly quickly.  In times of high stress, whether it be physical or emotional (even excitement), it is recommended that patients increase their B12 to prevent symptoms from returning.

We are now currently awaiting an evaluation for yet another autoimmune disease.  Appointments are coming in the following weeks so I will fill you in as I get information.

To end on an inspiring note: I decided to call this "Antibody Ninja Girl" as an homage to my beautiful, amazing angel of a son.  He has a difficult time seeing his mother go through so much.  He feels helpless, but just wants to make things better.  He has taken on an very strong interest in super heroes.  To ease his anxiety about his environment he is constantly saving the world!  It is adorable, and he is certainly heroic.  If he believes super heroes can change the world, let's give it a shot.  These antibodies are like ninjas in the night sneaking in and destroying healthy tissue in my body.  We are out to end their destruction.  Join me in the fight.  Power to the people.  Hahaha ok that's a little dramatic, but you gotta laugh at the little things in life.  That's what makes it all worth while.

Here are some links for real information 

Hashimoto’s Disease  www.edocrine.niddk.nih.gov/pubs/hashimoto-thyroiditis.cfm

Type I Diabetes www.diabetes.org

Interstitial Cystitis  www.ichelp.org

Epilepsy  www.epilepsyfounation.org

Disseminated Histoplasmosis  www.mayoclinic.com/health/histoplasmosis/DS00517

Undifferentiated Connective Tissue Disease  www.hss.edu/conditions_14568.asp

Celiac Disease  www.celiac.org or www.digestive.niddk.nih.gov/ddiseases/pubs/celiac

Pernicious Anemia http://www.nhlbi.nih.gov/health/health-topics/topics/prnanmia/

Autoimmune diseases aarda.org