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. 

Appreciate The Victories

  I wanted to write last week, but was honestly just too exhausted emotionally to get anything out there. I know I am not alone. Again, I am a positive person. I just do not think anyone is getting through this year unscathed. In an effort to avoid further conversation about the barrage of information that is being pushed down our throats currently, let's go back to talking about the main point of this blog; my absurd health and the events that unfold.

  My focus today is my biggest frustration of the moment. I have mentioned it before, but this darn broken foot of mine. I am typically confined to my home due to my health. I have to nearly pack up the house just to leave for a few hours; meds, emergency gear, protective measures, etc. The current pandemic has forced me to stay in even more, which has actually proven good for my Lupus. If only all others would fall in line. Lupus is really affected by sun rays so the less time outside is reducing inflammation inside my body. I am getting cabin fever though. With my foot broken it is limiting my activities even more and that is driving me crazy.

  I went to the podiatrist two weeks ago for a follow-up hoping I would be able to begin using only the walking boot with no crutches. No dice! Everything is still in place and aligned which is normally a big concern with diabetics. That one was a relief. However, my foot is not ready yet. I was moved into a smaller boot. The first one went up to my knee. This one is mid calf. But I still needed 2 weeks continuing non-weight bearing. Then, the plan is to move on walking with the crutches as support the third week. The fourth week I will be allowed to walk in the boot without a scooter or crutches for one to two hours a day. I will see him after that week.

  I am on the third week. Although I am feeling improvement I am not ready to put my foot down too much so I am using the crutches and scooter just as I had. I have put a little more weight on it, but not much. Next week I will try walking in the boot with the crutches. I am just too afraid to push too quickly and end up spending more time recovering. Let's get'er done by taking it slow.

  My shoulder injury that occurred last fall was supposed to be a simple eight weeks of physical therapy. That turned into sixteen weeks, then twenty four weeks.....and then COVID-19 caused the facility to close so I had a home program to follow. I continued that until I had reached my final goal/milestone. All in all it ended up going from October until May. Except, the facility opened up again in June so they called me in. As terrified as I was to leave the house I thought they would see the progress I made and release me. HA. Nope. They started me back up to finish out six more weeks. At this point, however, my foot was already broken so they had to modify a lot of my exercises. Although I enjoyed the challenge, I had to let them know that until I could bear more weight on my foot I just wasn't strong enough to be so active. That length of time has challenged my patience and emotions greatly.

  With my foot slowly moving along, I am becoming more fearful of the actual length of time for healing. Not only do I need to take baby steps to start bearing weight, it will then take six to eight weeks before I can possibly get out of a boot. Once out of the boot I will need special shoes and/or inserts to support my foot. I will also have a lengthy physical therapy/rehab time. I have come to accept that. I believe in about a year I may be where most healthy people are after four to five months. A very healthy person I know had a four year recovery from a sesamoid fracture of the foot. That bone is right near the big toe embedded in tendons. My fractures are of the calcaneus and cuboid, which is the heal bone and the bone that attaches it to the last three toes. Seems to me, I am no expert, but it seems to me they are similarly difficult to heal because of their positioning. That being said, I am just a little overwhelmed with the thought of it all.

  I am an active person. Sick or not, I exercise everyday, multiple times a day. Not just because I have always been an athlete, but when I eat I must get up and move otherwise the food sits like bricks in my belly. Trust me, I would be fine with a morning workout and be done for the day. I prefer to walk around or clean or something similar for the movement after food, but right now I have to find a creative way to move after lunch and dinner to get some movement in. We recently moved into a home that sits on front of a mountain. My husband and son have spent a lot of time hiking and discovering new "Goonie adventure's" as my son calls them. I am so envious. I try to push that down because it is just the reality of the moment holding me back from joining them, but I miss it. FOMO.

  We also live in an incredibly beautiful rural area of NM. There are so many hidden gems and well sought out tourist attractions. All outside and wide open spaces so during this moment in history it is perfect. I have yet to visit my favorite lake that I hear is pretty full right now. I haven't been able to get to that area to hike around either. My parents live in the wilderness, but it has been ages since I have been to their property even though it is a mere twenty five minutes from us. There is a lot of "I wish I could"s going on here. That only makes me feel sad because that is a lot of negative and fearful thinking.

  As this blog typically is, it is helping me iron out my thoughts in a cathartic way allowing me to see what I should be appreciating. I can definitely say I am learning a lot more about my body. Because I have had to get creative with movement and exercise I am probably stronger now than before. Most of what I do is upper body work so my arms and abs are steel right now. There is a lot of total body workouts I can do on a yoga mat without putting pressure on my foot so my legs are still be activated. The movements I am learning from the online program I came across have trained muscles I rarely used before. It is also helping my shoulder because the abs, hips, and butt are the center of your body. Making them strong creates balance helping strengthen your posture muscles. That comes along with shoulder strength so....bonus ;-) My only hope is that once I can incorporate weight bearing exercises I don't lose sight of what I have created now. That is a goal I plan on focusing on as I recover.

  It being the year of shelter in place seems like the best time to be laid up with an injury. My hope is that maintaining my active lifestyle while hurt will help during the rehab phase. Since I will be going to the same facility for physical therapy as I did for my shoulder, maybe they can get knocked out together and I can worry about something else. Isn't that human nature? When all goes well, we still find something we long for. The good thing is, I know that to be true. with that in mind it helps focus your mind and heart on what you do have that is positive.

  Everyday I wake up and work to find something I am proud of and hold it close. When life is so overwhelming, focusing on small victories is the best medicine. Today has not been my favorite day, BUT I have my small victories. I got up before my alarm meaning I had good sleep last night. I woke up in a good mood. I completed my workout, enjoying it the whole time. Man it was tough though. This Caroline Jordan health coach is awesome. It is raining so this high desert is getting some good moisture. I had no control of that, but it is nice. And I was able to get out and deal with an errand or two. Let me just say, rain and crutches are not easy. Believe it or not, writing this blog today is a victory.

  It seems I have so much to chronicle, share, and inform that I often second guess every word. I truly want to help someone out there who may be struggling with similar issues. I want to keep my friends and family up-to-date. When all this first began in my early twenties, I had no where to turn for a road map on how to navigate such a complex web of diseases. I had no one to look to as a role model for keeping your head above water and managing these disease that seem to fight one another.

  I am a professional student. I love to learn and research. I rarely found anything. One thing I found solace in was learning that President John F. Kennedy likely suffered from the same rare disorder I have, APS Type II. A little snippet, they actually had him isolated for a while to give him steroid treatments so when he began to run for president he looked healthy and vital. All the while, even during his presidency, he suffered in pain daily. His back and adrenal glands really took him out. That is a small pinhole picture for you. There is not a whole lot written about it. Anyway, I needed a JFK to look to during those first few difficult years. I want to make it easier for a layman who may be ill or have a family member who is ill to find some real account information. Not just medical jargon, but real world accounts. I hope that this blog reaches someone who truly needs it. I pray that it leads them to better scientific research to gain knowledge. Science talks the talk, I walk the walk. Together we can conquer.

   It has been a few years since I last posted. I really needed some support when I first starting going through this crazy journey of multiple illnesses stacking up on one another eventually being found to have APS Type II which is a fancy name for "my immune system prefers to attack me". I could find information on each disease. I could find blogs and stories of people who had theses diseases. But I could not find someone who had faced so much all at once. I could not see a light at the end of all these scary doctor appointments and tests and hospitalizations. I felt lost and alone, and understandably scared. I started this blog because it was what I was looking to find. I knew that there must be more people going through this, yet no one was talking.
 
   A few years into writing, and being very vulnerable, I was told by someone that the information I was sharing would be better put in a journal. I got another comment or two after that as well. It started to make me feel bad. Just two or three tiny statements had this enormous affect on me. I shut down. I no longer wanted to share my story. I read non-fiction all the time. I love learning the ins and outs of anybody's stories. I thought that if I shared I would help someone else. Then these statements made me feel as if I were doing something wrong.

   I started this blog with the intention of it eventually turning into a book. From the time I was first diagnosed with Type I Diabetes I was told I needed to write a book. As things played out for the next decade, the inquiries about a book kept flowing in. I continue to get encouraged to write a book. "It will help doctors." or "someone just like you needs this right now." or "it is so incredible, it is almost unbelievable." So, here I am again at my keyboard. Whether or not I ever turn my story into a book, I do not know. What I do know is, if I can impact someone I need to act.

   Without going back detail by detail, I just want to re-introduce myself. I am a 37 year old wife and mother. I grew up in rural NM. At the age of 12 or 13 I was diagnosed with Hashimoto's Thyroiditis. That is similar to having a slow thyroid except the thyroid is actually a goiter or inflamed. My father passed away from Type I Diabetes when I was very young. At the age of 20 I was found to have the disease as well. I was in college studying psychology at the time. My goal was to help special needs individuals. That diagnosis made me take a bit of a turn and I decided to also study nursing wanting to eventually become a diabetic educator. Suddenly I began to have another problem. This time it was interstitial cystitis. A condition that prevents your bladder from maintaining its mucus layer leading to ulcers and burns inside your bladder. I began medication and started to feel better. I was told, however, that fertility was going to be an issue. Not being married and only being 21, that information went in one ear and out the other. I did have a long term boyfriend, but I am a total Type A personality so babies were not on my mind.
 
   Jokes on me. I found out I was pregnant at 22. I was warned the pregnancy was not good. I continued my studies and had a healthy baby boy nine months later. Things seemed to be stabilizing. I had good blood sugar control and my thyroid medication was on point. I no longer needed my bladder medication because the IC had gone into remission. None of this stopped me from striving to reach my goal of a career in medicine. Until one fateful day my boyfriend, now husband, found me face down in the closet at 6am. I had had a seizure. Mind you, we thought we knew all of my health issues and epilepsy was not in the mix. The seizures became more frequent and continually unexplained. After about a year, we decided to move back to our rural hometown for a slower paced life hoping that would help. Unfortunately it didn't.

   As time went on the snowball rolled.  I was sent to the Mayo Clinic twice which only gave us a clear diagnosis of epilepsy. That made it necessary for more testing in our local region. I was found to have full blown Celiac disease which lead to a diagnosis of pernicious anemia, chronic atrophic gastritis, alkaline stomach, and gastroparesis. I was sent to a rheumatologist who diagnosed Lupus, but things still didn't seem right. To me or my doctors. I was sent to an immunologist. They found an array of allergies. Then suddenly, an answer.

   I was diagnosed with Schmidt's syndrome or Auto-immune Polyendocrine Syndrome Type II. That's a fancy way of saying I have an overactive immune system that is attacking my body in multiple places. This made the myriad of diagnoses come together. But as all diseases do, they progressed. I finally agreed to go to Johns-Hopkins University. From there we were told my stomach had come to a halt and I needed a device called a gastric stimulator to survive.

  Six weeks later we were in Dallas preparing for this new chapter. I got the stimulator implanted and began gaining a little strength and weight. My weight had gotten as low as 82 lbs. We spent four years in TX so I could be close to the doctors that implanted the device. Through those four years there were hospitalizations and a few bumps in the road, most of which are documented in previous posts. We eventually made the decision to move back to NM because I was becoming overwhelmed with being the patient, not feeling like a human. We chose a place on a major freeway so access to doctors would be easier because, let's face it, I do need monitoring. I also made sure there was someone nearby that could mange my stimulator.

   The past four years have played out fairly smooth compared to my roller coaster decade and a half prior. Things have progressed as most diseases do. My stomach is no longer really responding to the stimulator. The battery will last about a year or two more if I am lucky. At that point, I will have to decide whether to replace the battery or remove the device all together. Because it has been so long (2013) since it was implanted I am worried I do not remember what it felt like to live without it. Through a lot of long, hard talks with my husband I have decided to let it die. I will hopefully be mentally strong enough to leave the device in for two to three months nonfunctional. This may give me a better idea of how much of a difference the stimulator has on me. If I decide to live without it, we can then remove it.

   To be honest, my knee-jerk reaction is to take it out. The battery pack is under my skin in a pocket above the muscles. The leads go through the muscle to connect to the stomach. The battery pack takes up the entire left lower quadrant of my abdomen. For someone who is 5'3" on a good day and hangs out around 100 lbs right now, that is a lot of space. With my diabetes I have an insulin pump which is connected to the body by an infusion, similar to IV's except it is just in the fatty tissue not any veins. It needing to be in fatty tissue limits your sight options to the abdomen, love handles, buttocks, inner thighs, or back of the arm. A continuous glucose monitor, Dexcom, is also something that needs to be stuck into fatty tissue to read blood sugars through interstitial fluid in fatty tissue. All that being said, I have very little fat so I have my Dexcom on the right lower quadrant of my abdomen. That leaves the mini love handles for my pump infusions. The Dexcom and insulin pump infusions create scar tissue. Scar tissue does not absorb insulin properly and does not allow the Dexcom to have accurate numbers. We have tried other parts of my body, but these are the only places that work. Problem is, the scar tissue is building up and I have no where else to go. If I had that left lower quadrant of my abdomen available for my diabetes management devices it would help.

   The conundrum here is blood sugar versus nutrition and weight. With the paralysis of my stomach and the multitude of other digestive issues, food is not absorbed properly. This wreaks havoc on my blood sugar. A normal stomach pumps about 16-24 times per minute acting like a blender with your food and passing it on to the small intestine. If I am lucky, mine will do that in a day. Food does not travel consistently or fluidly. Sugar is absorb through your small intestine so not knowing when the food actually will get to the small intestine causes some issues when trying to manage my blood sugars. Add that to the scar tissue I have building up causing trouble with insulin absorption and diabetes management is nearly impossible. I do what I can with diet and exercise, but a gastroparesis diet is completely opposite of a diabetic diet.

   It is recommended that people get around 25 grams of fiber per day. Fat is ok, but best through plants and nuts. And protein recommendation is about 40 grams. Every body is different, this is just general. For diabetics, if you follow this diet with very little sugar you can be smooth sailing. Now for gastroparesis it is recommended to keep fiber less than 10 grams per day. Same goes for protein. And fat should stay around 5 grams per day. WHAT?! Yeah. Think about that one for a second. One egg is roughly 6 grams of protein. One slice of bread typically has anywhere from 2-5 grams of fat. A banana has about 3 grams of fiber. Now, imagine your typical day and your typical diet. Seems nearly impossible to meet all these bench marks or limits. There you have it. What would you do?

  This has just been a brief re-introducing of my health background. Let's remember, my health does not define me. Reading this is daunting and it all sounds depressing and scary. The truth is, you're right. But I am not living in a pity party. I still have a million blessings all around. I still have the crazy mom days. I still find a way to exercise EVERYDAY because I love it. It makes me feel better. It makes me happy. And it makes me feel proud and accomplished when I have conquered something. I love to read. I like crime shows and comedy specials and sports. My son is autistic and teaches me so much. We have a crazy little 9 month old Australian Shepherd mix who makes us laugh everyday.

   In an effort to not make this post any longer I will sign off for the day. My intention is to return to writing. I would love to share with you my antics, knowledge, health, and personal growth through this journey I call life. I will leave you with this little nugget. I have become friends (in my mind) with a health and fitness coach on YouTube named Caroline Jordan. She says "Smiling is an advanced move if you feel the need to kick it up a notch". I feel the need, ladies and gentlemen.