Giving Up Is NOT An Option!

Happy Sunday my friends. I’ve had a very busy week….with ups and downs. It’s hard to believe that just over a month ago, I was housebound and had been for a very long time! If I drove my son to school or drove to the pharmacy, I considered that a huge win for me.

This week, I have left the house everyday. It felt amazing!! I felt like my normal self again, before I got sick. I ran a ton of errands, I went to a doctor appointment, I drove into Portland and picked up my brother and took him to an appointment he had downtown, I drove to Clackamas to pick up my daughter from her Dad’s house, I drove to Tigard to take my daughter to get pampered, I cooked dinner and did some housecleaning, I just kept pushing myself to do more and more.

I also had quite a bit of stress come up, which I proactively handled. I was really proud of myself. I’ve been battling a really dangerous infection, which normally would have landed me straight into the hospital. The stress I’ve been under would likely have landed me in the hospital as well. Pushing myself with as much as I did would have landed me in the hospital.

Being on the adrenal pump has been an incredibly huge blessing in my life. It has literally given me my life back. Has it been all roses? Unfortunately not. It has come with a whole new set of rules and responsibilities for me. It’s been even more of a learning curve in the past month than in the 2 years of being diagnosed with Adrenal Insufficiency. I literally learn something new about my body every single day.

Here’s where it gets tricky. My body still has AI. My adrenal glands still don’t work like a healthy person’s adrenal glands. In a healthy body, the adrenal glands know when to produce more cortisol automatically. I don’t have that luxury and I never will. I have to constantly monitor how I’m feeling and what symptoms I’m having to know when I need extra cortisol. And sometimes, when my cortisol is too low, my brain goes into such a deep fog that I have to rely on other people to tell me that there’s something not right with me and that I’m probably low.

As great as I felt this week, I also kept sinking into low cortisol episodes. My brain said go go go, but my body was clearly not on the same page. One morning, I was having an adrenal crisis and I had to wake up my husband to give me an emergency injection. Last night, I was so low in cortisol that I blacked out and all I can remember is that my husband told me that I needed more cortisol and lots of it. I had been on a phone call with a friend who was trying to teach me something about my medications and the pump, and I couldn’t think clearly enough to actually do as she was suggesting. I sent out a couple of text messages that made absolutely no sense, as if I was completely drunk texting, which was not the case. This morning, I had really bad nausea and lower back pain. Those are both symptoms for me of low cortisol, but I didn’t recognize it until my husband pointed it out to me and told me to take extra cortisol. Within minutes, my nausea and pain were gone.

We decided that today is going to be a total day of rest for me. We also came up with a plan to help me recognize when I’m low in cortisol and exactly what I need to do about it, just in case no one is around, and also because this is my body and I am 100% responsible for taking the best care of myself.

I’ve heard a lot of people with AI say they just want to give up. That saddens me. I’ve made it my mission to focus on my health to be the best wife, mother, and friend. When my health is good, I can and do help many other people who are having struggles. It feels as though God is working through me. God has sent angels into my life to help me get to where I am today and I’m here to tell you that giving up is not an option!

5 Steps To Being A Bad Ass Advocate

Until 2008, when I first got sick, I had no idea how important it was to become my own advocate for my health. And not just any advocate…I had to learn how to be Bad Ass. Normally when people get sick, doctors are able to diagnose you and help guide you back to good health. That was definitely not the case for me. I spent the next 8 years fighting for answers. Even after I was diagnosed with Adrenal Insufficiency, I had to continue to be a strong advocate. In fact, I had to turn the knob up on just how Bad Ass I needed to be. After all, this is my life and if I truly want to live and not just survive, I had to take charge and become the CEO of my health. So, how does one go about being a Bad Ass Advocate you may ask?

  1. You must decide that your health is top priority for you. This one took me a while to “get.” I had no idea in 2008 that I was about to be chronically ill for the rest of my life. One day I felt perfectly healthy, and in a blink of an eye, I got sick and stayed sick. I thought I had a stomach bug, but after a few trips to the ER, I knew I had to figure out what was going on, since they only treated me for my symptoms and sent me on my merry way. I went to go see my doctor, she ran some tests, but ultimately just ended up putting me on large doses of Zofran and pain pills as a treatment plan. She never even went over the tests with me. I got the results in the mail, but wasn’t sure what they all meant. I wasn’t thrilled with the treatment plan, so I decided that if I was going to get better, I had to do whatever it took to get some answers. After all, I had three kids that depended on me.
  2. Get ready to do research on your own. Had I just followed my doctor’s treatment plan, I most likely would be dead right now. I started researching what my test results meant and what could possibly be wrong with my body. I took this information to my doctor and insisted on further testing. That started my journey of seeing specialist after specialist and having more tests run on me than a lab rat. I became very knowledgeable and I wasn’t afraid to ask for certain tests to be performed. After I was diagnosed in 2016, that’s when I ended up doing the most research and to this day, I still do ongoing research. This is my life and my body and just relying on doctors for answers and treatment plans proved to not be in my best interest. When I see a doctor, I’m always prepared with a list of questions to ask. It doesn’t matter if it’s my PCP, my Endocrinologist, an ER doctor or an admitting doctor. Also, joining support groups online can be extremely beneficial. Not only have you done your own research, but now you have other people to talk to that have done their own research that can help you as well.
  3. Find doctors who are on the same page as you are in regards to your health. Think all doctors are the same? Think again! I’ve been through my share of doctors over the years. When I realized that I knew more about Adrenal Insufficiency than my Endocrinologist, it was time for me to find a new one. I started asking for referrals and now have one that works with me and respects my knowledge. As far as a PCP, my last one literally would throw her hands up in the air whenever I brought up Adrenal Insufficiency and say “I’m not touching that.” After being placed on medications that interfered with my Adrenal Insufficiency, and her lack of knowledge, compassion and willingness to do any research to help with my health, it was time for her to go. I then decided that I was going to interview doctors prior to becoming their patient. Luckily, I found a wonderful PCP who has done extensive research and continues to do research so that he can properly treat my illness. I have also fired doctors in the hospital because we couldn’t get on the same page. Yes, you can fire doctors! You don’t want to leave your life in the hands of a doctor that might do treatments that will send you to the ICU or the morgue.
  4. Question every medication and every test being performed. If you’ve been to the ER, you know that typically, you’re being poked with a needle before you even see a doctor. And sometimes, you’re even getting medications that they ordered prior to an examination. It can be challenging when you’re not feeling well to ask the questions, but this is crucial. If you’ve done your research, you know which tests should be run. You should also know which medications work best to treat you and which ones to avoid. Trust me, this did not fully compute with me until I learned the hard way. Not only in the ER, but also the hospital, with my PCP and my Endocrinologist. There’s a reason why they call it practicing medicine. Most doctors won’t take the time to know your history, and they will simply run tests and give medications that they’ve given to other people in the past, assuming that this is in your best interest. I’ve had way too many bad reactions or unpleasant side effects from medications that I wasn’t even sure of the reason why I was on the medication in the first place. My list of allergies not only includes what I’m allergic to, but also lists medications where I’ve had a negative reaction to. I’ve also had so many CT scans and MRIs that I am in danger of getting cancer. You have to weigh out your options, but first, you have to be bold enough to question why a test is being performed or why a medication is either being prescribed to you or going into your IV site. Is the test necessary? What are the pros and cons of the medications and do I really need to be on the medication? You’ve seen the commercials where they glorify a medication like it’s the greatest thing in the world, but then list all of the harsh side effects. Unlike doctors, those commercials are regulated to list side effects and potential problems that may arise while taking the medication. So, make sure that every doctor that is giving you medications or running tests on you is a walking commercial, so to speak.
  5. Take a proactive approach to your health instead of a reactive approach. God only gives you one body in this lifetime. Don’t sit back and assume that the treatments you are getting are the best for your health. Furthermore, don’t wait on the sidelines to start feeling better. I had issues every month when I got my period. More times than not, I ended up in the ER because of the issues. I decided to have a hysterectomy, after doing my research of course, and it turned out to be a huge blessing in disguise. I had some major issues going on inside of me that only could be diagnosed with the hysterectomy. Recently, I got on the adrenal pump. Prior to that, I spent two years taking oral steroids every 4 hours and had to play the guessing game of when I needed more or if I needed to take them earlier than the 4 hours. I was basically reacting to what my body was trying to tell me, and often times, my cortisol was so low that I couldn’t think straight in order to know when I needed extra steroids. During my latest hospitalization, I decided enough was enough. I no longer wanted to continue the path that I was on. I no longer wanted to refer to PeaceHealth Hospital as my second home. So I reached out to people that I knew that were on the pump and devised a plan to get on it as soon as I was released from the hospital. The pump has drastically changed my life so far. I am now getting a constant amount of cortisol in my body, comparable to a person without Adrenal Insufficiency. I’m no longer waiting to feel better. I feel amazing and it has helped me to make plans and goals for my future. But here’s the key….I didn’t wait for my Endocrinologist to suggest it for me. I went to her with the idea. Her initial response was “But it’s not FDA approved yet in the U.S.” I could have just accepted that answer and waited for the FDA. Instead, I was prepared for her to say that and I had a plan for convincing her to support me, which she did. Now kids, “THIS is my new normal” and I couldn’t have done it had I not mastered being a Bad Ass Advocate for myself!

 

10 Things I Wish My Endocrinologist Would Have Told Me….

I was diagnosed with Adrenal Insufficiency on March 23, 2016. When I met with my first Endocrinologist, we’ll refer to her as Dr. W, I knew nothing about Adrenal Insufficiency so I took a notebook with me, prepared to take lots of notes. In a nutshell, this is what Dr. W told me…”Take Hydrocortisone twice a day, I’ll see you every 6 months for labs, and you’re going to be able to live a normal life again!” The “2016 me” was beyond ecstatic, after suffering with symptoms for over 8 years. The “2018 me” rolls my eyes and wonders how this doctor ever made it through medical school, let alone becoming a “specialist” in medical care.

If you’re anything like me, I love knowledge! As soon as I was diagnosed, I started spending hours upon hours researching my new diagnosis. I found support groups on Facebook, with people who were members that each had their own Endocrinologists and ranged from being newly diagnosed to having Adrenal Insufficiency for decades. I quickly realized how much Dr. W did not tell me, and after having a couple more appointments with her, I realized that I knew more about my illness than she did. As you can probably guess, I fired Dr. W and found Dr. C, who is very knowledgeable and has an appreciation of the fact that I probably know just as much about Adrenal Insufficiency as she does.

Over the past couple of years, there have been many newly diagnosed people who have joined the support groups on Facebook and have posted questions, desperate for answers, just like I had been at one point. Over time, I have become very frustrated because of the overwhelming number of newly diagnosed people who’s doctors were basically telling them the same thing Dr. W told me, and nothing more. So, I figured I would compile the Top 10 things I wish my doctor would have told me when I was newly diagnosed. I’m not a medical professional, and before you change anything in the care of your Adrenal Insufficiency, you should consult with your doctor.

1.“Taking Hydrocortisone 2 times per day will not be enough!” Hydrocortisone stays in a body anywhere from 4-6 hours at a time. When I took my Hydrocortisone twice a day, I would feel great for about 2 hours each time I took them, but felt horrible the rest of the day. Little did I know, after the Hydrocortisone metabolized out of my body, I had no cortisol in my system, which is why I felt so horrible and continued getting sick. A normal body creates cortisol 24 hours a day, so it would make sense to take the medication that is supposed to replace the lost cortisol, as closely as possible to how a normal body would create it. In order for that to happen, a person needs to take Hydrocortisone between 4 to 6 times per day, depending on how quickly their body metabolizes the Hydrocortisone.

2. “How much and when to take Hydrocortisone matters!”In order to mimic a normal body’s output of cortisol, you have to take Hydrocortisone in a way that will be as close to how the body produces cortisol as possible. How do you do that? You have to follow the Circadian Rhythm dosing schedule. For me, since I metabolize Hydrocortisone every 4 hours, that means I need to take it 6 times a day in order to have 24 hour coverage. Is it a pain in the butt? It sure is….I have to set alarms and even wake up in the middle of the night to take my meds. Is it worth it? It absolutely is! Before I started following the Circadian Rhythm dosing schedule, I just guessed at how much I needed to take every time. I knew that normal bodies had higher amounts of cortisol in the morning and very little at bedtime, so I just took the highest amount when I woke up and tapered down during the day, and took my last dose at bedtime. This schedule not only had me feeling awful when I first woke up and having highs and lows throughout the day, but I was also over replacing my cortisol at times during the day and I had no cortisol in my body at night and early in the morning, when a normal body would have cortisol.

3. “You will have to stress dose!”Do what? Dr. W never told me that there would be times that I would need to take extra Hydrocortisone. In a normal body, anytime the body needs extra cortisol, the adrenal glands produce more instantly. This is not the case for people with Adrenal Insufficiency. At times when we need more, our bodies metabolize the Hydrocortisone faster and are left searching for more. How much extra to take and when to take it really depends on what is currently going on inside of your body. If you are having additional emotional stress, even if it’s good stress, like attending a wedding, you’ll have to take a small amount extra. If you have a stomach bug or an infection, you’ll have to double the amount that you take during the day. And if you’re puking or having surgery or get into an accident, you’ll need 100mg of Solucortef, which is the emergency Hydrocortisone. It’s very important to know what your symptoms of low coritisol are and to listen to your body.

4. “You will need to carry an Emergency Injection with you at all times!”Not only did Dr. W not tell me about Emergency Injections, when I asked her for a prescription for one, she told me I didn’t need it. Make no mistake, not having an Emergency Injection on you at all times can be deadly! I didn’t realize just how important having one at all times was until I had an Adrenal Crisis, wasn’t breathing, and ended up “dying” three times in one night. Where was my Emergency Injection? Sitting at the pharmacy because I hadn’t gotten around to picking it up. I have had a few times where I’ve gone into an Adrenal Crisis and wasn’t breathing, and after my husband injected me with the Emergency Injection, I started breathing within a minute or two. Dr. C makes sure that I can have several on hand at a time, with plenty of refills. She also advised me to inject as soon as I cannot keep my oral meds down if I am puking.

5. “You will gain weight!”Say it isn’t so! I have always been a very thin person. I could eat whatever I wanted and never had a weight problem. At my second appointment with Dr. W, I was horrified when I had gained 15 pounds. Dr. W told me not to worry about it because it was just the Hydrocortisone getting my body metabolized, and that I shouldn’t gain anymore. Now, I look back at those 15 pounds and how horrified I was, and only wish that I could go back to that weight. I kept gaining weight and had no idea why. I rarely eat sugary foods and I hadn’t changed my eating habits to support the weight gain. I saw many posts on the support groups of people who had gained weight, so I thought it was just something that happened and couldn’t be controlled. Finally, one of the Admins of one of the support groups on Facebook wrote a post about why people gain weight on steroids. Basically, she said that carbs instantly turn into insulin, so our bodies have a huge rush of insulin every time we eat carbs, and that turns into fat. Seriously? I love carbs! Give me bread and pasta and I’m a happy girl. Well, now I’m a chubby, happy girl. After doing some research, I found that following the Ketogenic way of eating was one of the only options for losing weight while on steroids. When I follow that way of eating, I do lose weight, but when I give into my carb cravings, I start gaining again. So, carbs and I had to break up.

6.“You’ll need to take a Calcium supplement and other supplements!”I have a good friend of mine that is a doctor. After I was diagnosed, he asked me how much Calcium and Vitamin D my doctor had me on. “None” was not the answer he expected. He told me the importance of taking Calcium and Vitamin D every day, because steroids rob your bones of Calcium and it can lead to Osteoporosis at a very young age. Also, because the Adrenal Glands control so many of your hormones, it’s important to have your other hormones tested to see if you need to be on any other supplements. For me, I have to take a DHEA supplement every day. I didn’t even know what DHEA was until recently. I was feeling sluggish and had to take naps during the day. Dr. C tested my DHEA levels and they were low. Now, I take a DHEA supplement every day and my energy level has improved tremendously. I also take a daily Potassium supplement, along with Magnesium and with the heat, and being a “salt waster,” I also take multiple Sodium Chloride tablets throughout the day. If you have Amazon, I’ve listed some of the supplements that I’ve personally tried and take on a daily basis. Of course, before you start taking any supplements, please consult with your Personal Care Physician or your Endo. Most likely, they’ll want to run some labs first to see how much you’ll need based on your own personal situation.

7. “The days of going to the hospital are not over!”Not only are the days of going to the hospital not over, now that you have been diagnosed with Adrenal Insufficiency, you are going to have to be very knowledgeable and become a strong advocate for yourself for when you do have to go to the hospital. I thought my hospital days were over…I was wrong. I also thought that since I finally had a diagnosis, doctors would treat me with the correct treatment plan and would finally stop treating me like my symptoms were in my head…again, I was wrong. Unfortunately, I’ve been to the hospital many times since being diagnosed. I have found that there are two types of doctors. The doctors who took an 8 hour class in med school that think they know “everything” about Adrenal Insufficiency. And the doctors who admit that they don’t know as much as I do about it and ask me how to appropriately treat me. You will quickly figure out which kind of doctor you’re dealing with, and you need to be prepared to deal with the first type. I have “fired” doctors in the hospital because they refused to listen to me and have actually caused me to go into an Adrenal Crisis, in the hospital, under their care.

8. “Be prepared for an Adrenal Crisis!”Some people with Adrenal Insufficiency can go years without having an Adrenal Crisis. Other people have several a year. Knowing the symptoms of low cortisol can be detrimental to keeping you out of an Adrenal Crisis. Knowing the signs of an Adrenal Crisis will save your life! Always make sure you have your Hydrocortisone and your Emergency Injection with you at all times. Last summer, I was camping and decided to go out on our boat without any meds. I started having low cortisol symptoms, so my husband drove the boat to shore so that I could walk back to our campsite and take my Hydrocortisone. However, I got lost while looking for the campsite. By the time I finally found it, I was already in an Adrenal Crisis, and ended up spending the next two weeks in the hospital because of the severity of the Crisis. Also, making sure you always wear a Medical Alert ID bracelet is essential and making sure your loved ones know what to do when you do go into a Crisis is crucial.

9.“You are not alone!”When I first got diagnosed with Adrenal Insufficiency, I felt very scared and alone. I had no idea that there were thousands of people, from all over the world, just like me, who were living with this disease. Once I found the online support groups on Facebook, I felt a sense of peace. Suddenly, I could find someone to talk to or ask for advice 24 hours a day. Some of my best friends now are people I’ve met online in the support groups. Although I love my friends who do not have Adrenal Insufficiency, they don’t completely understand it, so it’s nice to be able to talk to people who are living with it every day like I am.

10. “This is your new normal!”Based on what Dr. W told me, I expected my life to go back to the way I felt prior to diagnosis and prior to having symptoms. I’m a little hard headed, so I waited over a year before I finally came to the realization that this life was my new normal. I will always have Adrenal Insufficiency, I will always have to take replacement steroids to live, I will always have to be prepared for good days and bad days. The sooner you can accept this, the happier you’ll be. Just remember, you’re stronger than you think you are! You are an Adrenal Insufficiency Warrior!

 

LIST OF MY DAILY SUPPLEMENTS…. Click links to read more about them… Again…before taking ANY supplements, consult with your doctor first.

 

Pure Encapsulations – UltraMag Magnesium – Enhanced Absorption Magnesium for Cardiometabolic, Neurocognitive and Musculoskeletal Health* – 120 Capsules

Pure Encapsulations – Potassium (Citrate) – Essential Mineral for Vascular Function and Overall Health* – 180

Pure Encapsulations – DHEA (Dehydroepiandrosterone) 25 mg

Thermotabs Each Buffered Salt Tab, 3 Count

“Blink Once For Yes, Twice For No…The Finale…”

When my physical therapist let go of my foot, I was able to hold my foot up. He massaged my leg and then asked me to raise up my leg…and I was able to do it! I was ecstatic! Finally, I was getting movement! I asked him if I could try standing up and at that point, he decided that he had to have a heart to heart talk with me about how I would need to learn how to walk again and how much of an uphill battle I was still facing, and told me that I needed to take things slow. I laughed at him and said “You don’t know me very well! When I put my mind to something, I won’t stop until I’ve accomplished it! I WILL be walking out of this hospital THIS week! Just watch!” Since I was able to now lift my legs a little bit, I figured it would be a cute idea to make a video of me kicking Mike in the leg to show everyone what I could do. This was so huge for me! I couldn’t wait for my next PT session. My Dad came to visit me and we were talking about his birthday coming up. I asked him what he wanted for his birthday, and he said “I want you to walk again!” Since his birthday was on Friday, I knew that I was going to have a lot of work to do, but I was determined to make it happen! That night, Mike took me into the bathroom and I wrapped my arms around his neck. He put his arms around me for support….and then I stood up! I couldn’t tell PT about this new accomplishment because they would take away Mike’s “privileges” to help me transfer from my wheelchair to the toilet or the bed. However, just knowing that I could do it was enough to make my whole day!

Tuesday morning came and I was determined to make more progress. Unfortunately, all of my physical therapists wanted to take things at turtle speed and I was ready to run marathons! I knew that I would have to use psychology to trick them into allowing me to push. With every “No” that I got, I became even more determined. I talked my physical therapist into allowing me to try to stand. She took me over to a set of bars that I could pull myself up with and she had my wheelchair behind me and she was in front of me to support me, in case I fell. I stood up and was able to shift my weight back and forth on each foot. I asked her if I could try walking. “Noooooo…..that is way too soon and no one is behind you to catch you if you fall!” I reminded her that I did have my wheelchair behind me and I had her to catch me, so I said “How about JUST one step?” She sighed, knowing that I was not planning on giving up until she agreed, so she said “Ok, ONE step!”

I was nervous. I knew I could stand, but what if my brain wouldn’t let me walk? I closed my eyes, said a quick prayer…and then took a step! “You did it! Open your eyes!” I begged her to let me take another step so that I could see it. She let me. I asked if I could use a walker to take a few more steps. After all, I would have the walker to support me and she could be behind me if my legs gave out. She got the walker and held onto the support belt that was wrapped around me. I pulled myself up from my wheelchair and I took a few steps. I can’t even put into words how excited I was! Mike hadn’t arrived at the hospital yet and I wanted to call him to tell him, but figured that him seeing it in person would make his day. So, I kept walking around the “gym,” having to take breaks, as my legs were still really weak. Once Mike arrived, I showed him that I could walk with the walker. He was as excited as I was! My physical therapist wanted me to rest, but I wanted to push harder. With Mike being there, I would now have two support people who could catch me if my legs gave out, so I talked her into letting me walk around the rehab floor.

I walked around as much as my legs and my aching back would let me. One thing that I didn’t anticipate was how much pain that I would be in once I was up on my feet. I jokingly said that it felt as if I was 20 months pregnant, but the reality was that my back was in intense pain, which drove down my cortisol levels quickly. I was told that this was a side effect of the paralysis. I also had shooting nerve pain that went from the bottom of my leg all the way up and across my lower back. Keeping the pain under control had already been tough, but once I was up on my feet, the pain was even stronger. I knew I had to be careful because even though I wanted to keep pushing, I knew that I was risking lowering my cortisol levels to an unsafe level.

The nice thing about the evening meds was that I was able to ask for more hydrocortisone when I felt like I needed them. I decided to take extra hydrocortisone because of the pain, but I also had a plan. The night shift turned out to be very busy for the nurses and CNA’s. I knew exactly when I would be checked on, and I made sure that I had enough broth and water to keep my electrolytes up. I waited until I got my pain meds and then I decided to use the walker to walk over to the door to close it. I then went back to my bed, but I didn’t sit on it. Instead, I moved my walker over to see if I could take some steps without it.

I walked over to a chair in my room and then back to my bed. Success!!! I then walked from my bed to the bathroom and then back to my bed. I was doing it! I was walking!! I had to take a lot of breaks because it was causing pain, but I figured that I had to take the opportunity to do as much walking as possible. Every time I was checked on for more meds or to take my vitals, I spent time relaxing in bed. I was wearing compression socks and my legs were hooked up to a machine that helped with blood flow. My doctor said that my legs were carrying at least 20 pounds of water weight in each leg, so that made walking even harder. I not only had the water weight in my legs, but it had spread throughout my body, making it harder to walk because I wasn’t used to the extra weight. I continued to walk around my room most of the night.

Wednesday morning, my physical therapist came in. She was my first physical therapist I had had and the last time she saw me, I was crying because I couldn’t move my legs. She gave me a huge hug and told me how happy she was to hear about my progress. “I want to walk today…without my walker!” She looked surprised and tried telling me that I wasn’t ready for that. I winked at her and said, “Trust me….I CAN do it!” She gave me a look like she instantly knew that I had broken the “rules” and started laughing. “Ok girl, show me what you can do!” She put my support belt around me and then had me walk from my bed to the chair. My legs were a lot stronger from the night before, so it almost looked like I had been walking for a long time on my own. “Wowwww….ok then!” I told her I wanted to walk to my doctor. Dr. Nicocio was up at the front counter, like he was many mornings. I walked up to him and said, “Hey Doc! Can I go home now??” He was floored, in a good way. He looked over at my physical therapist, almost as if he was asking for her permission but also wondering how on earth I was walking. He then said “Ummm….well…how does tomorrow sound?” “I’ll take it!!” He then did a few exams on me to check things out. He said that he would need to get everyone to sign off on me going home. I asked him for one favor. “I know that the rules of the hospital are for me to be wheeled out of here to my car when I’m discharged. I’m begging you to let me walk out of here…on my own!” He gave me a sideways smile, and said “I’ll see what I can do.”

Wednesday, I had to spend the day passing tests in order to go home. My occupational therapist’s test was the hardest. She took me outside to take a walk on unlevel ground and up and down stairs and sidewalks. I was in a lot of pain. This was a lot harder than I had anticipated. I kept having to take breaks and sit down for a while. There were a couple of times that I felt as though my legs were going to just give out but I didn’t say anything, in fear of them keeping me at the hospital longer. The pain got so bad that my cortisol levels started dropping rapidly and we had to go back inside for me to get meds and to relax. I was still on Cloud 9! I had my nurse make a video of me walking and I sent it to everyone. My new friend, Jennifer, in Tower 6, started crying. She ran around the floor, showing all of my former nurses and everyone who knew me the video. Later that evening, Mike wheeled me over to Tower 6 to visit the night shift, who wasn’t aware that I could walk yet. The first person we saw was Yaya. She was excited to see me, but when I stood up from the wheelchair and walked over to her, she started screeching. One of my favorite nurses was working that night. I showed her that I could walk and gave her a big hug. She laughed at how short I was and that she hadn’t realized it before I could stand up.

We went back over to the inpatient rehab unit. I ran into a sweet, older couple that I had spoken to a few times. The wife was there because of a stroke. They noticed that I was walking. They hadn’t known why I had been there, so when I told them that I was paralyzed less than two days before, they were blown away. The husband jokingly told me that I couldn’t leave. He said that I had the greatest spirit and I literally lit up the entire floor. He said that I had eyes that just went into people and made them feel good. I felt so warm about the nice things he had to say about me. As much as I wanted to leave the hospital, I had also grown close to so many people that I may or may never see again. I’ve grown to accept that mixed emotion, as I’ve had it many times. I normally do end up running into a lot of caretakers that I’ve had in the past with every hospital trip.

The next day, I was able to get everyone to sign off on my discharge. It was so surreal. I knew that I still had a lot of work to do to get back to the same physical condition I was in before, but I was so ready to go home. We packed up all of my stuff and I got my wish….they let me WALK out of the hospital! My journey did not end there. We went from the hospital to my chiropractor’s office, with hopes that he could help with the pain I had in my back. He has helped me so much in the past so I put all of my faith in his care. Although he did help, the pain would return the same day I saw him.

I spent the next several weeks trying to figure out why I was in so much pain. It took a huge toll on my emotional well being. I’m normally a very social person, but I ended up withdrawing from wanting to see anyone or even being on social media much. I was being proactive with my health. I found a new doctor that was committed to helping me with this journey of health. It was very encouraging. I also saw Dr. Nicocio again, and he suggested that I get cortisone injections in my SI joints. I got the injections and for the first few days, I was in a tremendous amount of pain. The doctor who administered the injections told me to expect more pain, and he also told me to expect that the first time I got the injections, it would provide relief anywhere from a few days to a few weeks. After the first few days, I finally woke up in no pain. It was amazing! I was able to cook and clean again. I felt amazing! For the first time in quite a while, I finally felt like I was returning back to “normal.”

Right before New Years, I got hit with the flu. I knew I had to double my dosage of corticosteroids, as the flu can literally kill me. After a couple of weeks, I started feeling better, so I went down to my normal dose of coritosteroids. However, the pain in my SI joints had returned. My dad came over to celebrate Christmas with us. We had all of the kids here. It was a good night, but I was in a great deal of pain, so I had to go soak in the bathtub a few times. Mike recognized that my cortisol levels were low, so he had me updose. I went upstairs and took another bath. I had time to think and realized that I was having low cortisol symptoms and that I should really have taken more corticosteroids than I had taken, so I got out of the bath and got dressed. My phone was downstairs so I could not text anyone to ask for more meds. Everyone was watching a movie, so it was loud. I started feeling dizzy so I sat on the toilet for a few minutes. I started to panic because I knew that I needed meds as soon as possible.

I started heading towards the door and then I felt it coming….it was too late…I passed out. Austin found me a few minutes later, unconscious. Mike gave me an emergency injection, while Taylor called 911. I woke up….but I couldn’t move and I couldn’t speak. Mike was yelling, “Jen, can you hear me?”

Tears ran down my face. I was scared. I couldn’t believe this was happening… again!!! I could hear Taylor on the phone with the 911 operator. She was asking if I was responsive. Trapped in my body again, all I could do was blink once to let them know I was ok and that I could understand….

“Blink Once For Yes, Twice For No…Part 3…”

Saturday morning felt like one of the longest days of my life, and it was just getting started. My spirit had been broken and I spent the majority of the morning in tears. This was unlike me. I’m not someone who just gives up. I sat there, in my wheelchair, a box of kleenex on my lap, sobbing, looking at my schedule for the rest of the day, and I had a little heart to heart talk with myself. I could “accept” that my new reality was learning how to live life in a wheelchair…or I could fight like Hell to walk again.

Next up on the schedule was Physical Therapy. I was ready! We first worked on how we could transfer me from my wheelchair to my bed without the hoyer lift. Using a support board, I learned how to use my upper body strength to scoot myself into my bed and then back into my wheelchair. My physical therapist was impressed with how quickly I was able to catch on and how strong my arms were. I felt great! We were off to a good start. She then wanted to go into the “gym” to see what else I could accomplish. There were mats that were at wheelchair level and we practiced having me transfer onto the mat. Once again, I felt accomplished.

“Ok, now I want you to lay down. I want you to move your left leg towards me….” I took a deep breath, I closed my eyes and said a quick prayer “Please God, please give me the strength to do this!” I then opened my eyes and focused as hard as I possibly could to get my leg to move. Nothing happened. I took another breath, this time holding my head up so that I could see my leg, as if I would be able to somehow make it move with my eyes. I focused hard, I even imagined being able to kick my physical therapist with my leg…and…nothing.

The tears just started rolling down my face. I felt like such a failure. “It’s ok, honey, now let’s try your right leg.” I tried moving it but kept thinking “What’s the point?” There was no movement. I just layed there, crying. I could see a mixed look on Mike’s face. He was trying really hard to show me encouragement but when I looked deep inside of him, I could tell that he was worried that I wouldn’t ever walk again. My physical therapist tried calming me down, and had me keep trying to move my legs, as she moved them for me. She explained that she was trying to teach my brain what it was supposed to do, and that she wasn’t expecting me to be able to move my legs on my own yet. Although her explanation brought some comfort, my spirit felt completely broken.

I spent the remainder of the day trying not to cry, or at the very least, to cry only when no one was in my room. I put on a fake smile, but I felt emotionally shattered. I just wanted to go to sleep and wake up, realizing this whole thing was one big nightmare. I tried going onto social media to take my mind off of things, but seeing posts and pictures of people enjoying their warm, sunny day with their families was just short of depressing. Soccer games, fishing, out on their boats….all things I imagined was probably not going to be in my future any time soon. I looked over at my female urinal and thought “Ok, at least I have something to look forward to….being able to pee without depending on someone else.” Saturday night after Mike left, I spent a lot of time praying and crying. I felt so angry with God. I kept thinking about how this disease has turned my life upside down. Why would God spare my life and my leg just a few months ago, just to leave me paralyzed now? My prayers were pretty whiny…”Why God? Why me? What did I do to deserve this? Please give me back my legs! Please help me to be healthy!”

Sunday, I woke up to a text from my oldest son, Austin. He was coming to see me. I was so excited! Austin always has such positive advice for me and knows how to put things into perspective. Also, I just wanted a huge hug from my first baby. When he got to my room, he told me he brought me a surprise. It was Natalie, his girlfriend, and she brought me a beautiful flower arrangement that she had picked from her backyard. I knew that my day was going to be good! I had no PT or OT that day and I could just hang out with Mike, Austin and Natalie. We had a good time, laughing and talking about their Senior year in school.

We were eating dinner, and in walked Soodabeh Mokry, a friend of my Mom’s, who was an RN and a divine healer through Angels and Reiki. We had talked on Facebook but I hadn’t met her in person. She had asked if she could come visit me, but I had no idea she was coming that night. I was excited that she was there though. She had such a warm aura about her. We had an instant connection. She was everything wonderful that my Mom had told me about her and much more! We had a great conversation and she shared some insight that she had received from Angels about my health and my life. Everything she said made perfect sense. The Angels had told her that I was afraid Mike leaving me because I was paralyzed. I started to tear up. They were right….that was my biggest fear. Soodabeh reassured me that the Angels also told her that he was going to be by my side, no matter what happened.

Soodabeh told me about how she used to work at Providence and they had sent her to classes on Reiki. She asked me if I minded her using healing energy on me. I thought “Why not? What do I have to lose? If nothing else, maybe I’ll at least feel better emotionally.” Soodabeh started by placing her hands on my back. I felt a cold sensation run through my body. She then placed her hands on my adrenal glands. The cold sensation grew stronger. I didn’t really understand what was happening, but it felt comforting. She then placed her hands on my leg. All of a sudden, my feet felt really cold and extremely heavy, like tree stumps. Soodabeh sat down and asked me how I felt. I told her what I had experienced and she got really excited. I had a feeling that was a really good thing.

After Soodabeh left, Mike took me outside for a stroll. We talked about Soodabeh and I told him that my feet felt tingly and then they started feeling even heavier, like I was actually standing up. Neither one of us knew what that meant, but we figured it was probably a good sign. On our way back into the building, my left pinky toe twitched. I looked down at my feet and thought “If that toe can twitch, maybe my toes will move….” It twitched again and then my big toe twitched. I decided to try to move my toes…they moved! I started laughing and I screamed out “Mike, my toes! Look at my toes!!!!!!” He was ecstatic. He told me to try to move my right toes. They moved, too! I was on Cloud 9! I took a video and sent it to Soodabeh and everyone else that I could think of. We went back inside and I showed everyone I could find on my floor that I could move my toes. It took a lot of concentration and they barely moved, but I finally had hope!

That night, I cried. This time, tears of joy. My prayers that night were very different. Although I still prayed for God to let me walk again, I also thanked Him for the movement in my toes and for sending Soodabeh to me. I wasn’t sure when I would be able to walk again…days, weeks, years…..but I felt so incredibly certain that I would walk!

Monday morning, Taylor FaceTimed me and I told him I had a surprise for him. I turned my camera around and I started wiggling my toes. “Loooook what Mommy can do!” I think he was more excited than if I had told him I was taking him to Disney Land. He started crying and I cried with him. I knew this day was going to be good! My physical therapist walked in and I showed him how I could move my toes. I told him that I planned on walking out of this hospital this week. He laughed, like he thought I was joking. My determination and my stubbornness grew more and more. After his “You need to learn to have patience” talk with me,  he then picked up my leg and bent my foot back. “Ok, I’m going to let go of your foot and I want you to keep your foot straight…” I blinked, and then he let go…

….to be continued.

“Blink Once For Yes, Twice For No…Part 2…”

Mike arrived at the hospital with Taylor and Emilee. While Mike talked with the doctor, the kids came over to me and tried comforting me, even though it was apparent that they were the ones needing comforting. Tears running down his face, Taylor said “Mommy, you’re going to be ok! I love you so much!” I kept thinking about how lucky I was to have such brave kids. I can’t imagine what was going through their 10 and 12 year old minds, as I was unable to move or talk. I could tell that they were scared to death but they did their best to hide it so that I would not worry about them.

The tech came in and took me to imaging. They did a full body CT scan, an MRI on my brain and spine, and an X-Ray.  I was transferred to the Neurology Unit, also known as Tower 6. The Neurologist looked over my scans and came in to talk to Mike. The results were all the same…they came back “Normal.” The doctor was dumbfounded. Over the years, I have grown accustomed to hearing those words, but how could my scans show nothing was wrong with me when I was trapped inside of my own body?

Over the next few hours, I started to regain upper body movement, thanks to the steroids needed to sustain life. My legs were still paralyzed and I still couldn’t talk. I had a shooting nerve pain that went from my left leg all the way up and across my back. The best way to describe the pain was that it felt as though my leg was hooked up to an electric chair and that pain would last for at least 2 minutes at a time, and then it would start throbbing. I was in constant pain, which drained my cortisol levels. My arms and hands were extremely weak, but I was able to communicate by typing on my phone. I understood everything that was said to me, and I was able to tell my Neurologist that I couldn’t remember how to talk. I tried screaming at the top of my lungs, but my mouth wouldn’t move. I could open my mouth….I could cough…stick out my tongue….but words would not and could not come out. How was it possible that after speaking for 39 years, I could not remember how to form one word?

“Well, the good news is that you didn’t have a stroke. The bad news is that you have something called Conversion Disorder, which is basically a neurological disorder which cannot be explained by medical evaluation.” His best guess as to why I had this was that it was caused by my severe PTSD when I had my major Adrenal Crisis in February and died 3 times. The difficult part of this diagnosis was that there was truly no way to know if I would ever recover. Would this be my new life?? Am I going to be confined to a wheelchair? Will I ever be able to tell my kids that I love them again? As terrified as I was, I put on a brave face with a fake smile so that Mike, my kids and my parents knew that no matter what the outcome was, I was going to be ok. Mike and all of the kids tried to trick me into talking but it didn’t work. Austin suggested sign language but since none of the family or nursing staff knew sign language, I was left with communicating with my phone. That was becoming my new reality.

Day 4…Tuesday morning came and I woke up in severe pain, just like every morning that I had been there. My nurse came in and asked how I was doing, expecting to have a pre-written message on my phone. “Well,  Jose-Nicholas, I’m in a lot of pain. It woke me up and….oh my gosh…oh MY gosh….I’m TALKING!!!!!!! I can TALK!!!!!! My voice is back! Oh my gosh, I CAN TALK!!!!! Can you hear me?????” He laughed, with a joyous laugh and said that he did hear me but didn’t want to say anything until I recognized that I could speak.  It was a miracle! I couldn’t remember the last time I felt as happy as I did at that moment. I was so excited that I called Mike, knowing that I would be waking him up and he was expecting it to be a nurse with some bad news. When he answered the phone, I could hear the panic in his voice. “Hi babe! I can TALK!!!!!” He was ecstatic. I could feel his excitement through the phone. He told me that he would quickly get ready and come straight to the hospital. We hung up and I asked if I could be transferred to my wheelchair. I had made good friends with a couple of CNA’s and I knew that I had to tell them the good news! The nurse called my CNA and new found friend, Yajaira, who I called YaYa. She came into the room and I excitedly said “YaYa, I can TALK!” She gave me a huge hug, as though she had just won the lottery, and hooked me up to the hoyer lift to transfer me to my wheelchair. She wheeled me around the Tower 6 floor so that I could go say hi to all of the many nurses and CNA’s that knew me. Mike came in and it was time for shift change, so I had a whole new set of nurses and CNA’s to talk to. My CNA friend, Jennifer, cried when I said hello to her. Both YaYa and Jennifer had been following my blog posts and  I would send them text updates on my progress, which they shared with my other nurses and CNA’s. It was so nice to make new friends. I normally always have such nice nurses and CNA’s but to make friends with them that I knew we’d be lifetime friends was such a blessing. The one thing that we had in common was the beauty of nature. Every night, we all took pictures of the sunset and every morning, whoever was here, we would take pics of the sun rising. It was so blissful. It literally took me away from the horrible reality of the possibility of not walking again.

My Neurologist and my doctor suggested that I be transferred to the Inpatient Rahab unit. I had already had people from the Psychology team and the Physical Therapy team come and speak with me. It seemed like the best possible next step in my healing. Mike was desperate and didn’t have faith in the care plan. He went to my chiropractor’s office to speak with them. Dr. Allen was not there, so he spoke with his son. Knowing that Dr. Allen had provided miracles before, he was sure that he could get me walking again. He asked about getting me a pass to leave the inpatient rehab, not only for going to see Dr. Allen, but my stepson, Devin, as also getting married that Saturday and I very much wanted to attend, even if it was in a wheelchair. Mike conjured up a perfect plan and included my Dad in it, so that no one would know what we were doing. The only challenge that we faced was how to get me in and out of the Tahoe, along with the wheelchair that did not fold up.

I’ll be perfectly honest. Mike had more faith in me being able to walk again with Dr. Allen’ help than I did. I was so nervous that his plan would fall through that I actually tried talking him into postponing our “road trip” to see Dr. Allen. I had several emotions. The biggest one was what if Dr. Allen could not cure my paralysis? Mike was literally placing ALL of his cards on the faith that Dr. Allen could heal me. And even though I had a lot of faith in him as well, I was left with the “what if’s” of the situation. Never for a second did I not think that I would walk again. That thought never crossed my mind, even though it had crossed the minds of Mike, my family, my doctor and the care team. I was scared to death of Mike placing all of his hope on Dr. Allen to heal me, and so many thoughts crossed my mind about what would happen if he wasn’t successful. A few months back, he jokingly told me that if I was ever confined to a wheelchair, he would leave me. Naturally, those thoughts raced through my mind. Am I going to lose my husband, my best friend, the only person on earth that I 100% feel connected to, along with my stepkids, especially Emilee, whom I love just the same as my kids I gave birth to? My cortisol levels dropped as I was in panic mode. I had to ask the nurse for extra Hydrocortisone, since a normal person’s body would just produce more cortisol in this situation, but mine was depleting quickly.

I was so torn in this situation. I knew that Dr. Allen had performed miracles for me before, but what if he couldn’t this time? How would Mike react? He was placing ALL of his belief in him and I was nervous. I spent hours upon hours thinking about it. I knew that I was about to be transferred to Inpatient Rehab and although I didn’t have high hopes of it working, I felt more comfortable with that failing than I did with the idea of Dr. Allen failing. My only concern at that moment was the emotional well being of Mike. I made very excuse I could think of to talk him out of “breaking me out” of there. Even if there was a1% chance of him not being able to fully help me, I didn’t want to risk Mike’s spirit. I was in a Catch 22. I desperately wanted to walk again, but I was afraid that if Dr. Allen could not cure me, Mike would lose his spirit, which drove my ambition.

On Saturday, I was handed my daily schedule. It showed my eating times and more importantly, it showed when I had PT and OT. I was nervous, to say the least. I knew that this was going to be an uphill battle. I felt ready, but at the same time, I felt incredibly scared to death. My first few sessions for the day were just evaluations, so I took comfort in knowing that I wouldn’t have to push hard. The first Physical Therapist came into my room and introduced himself to me. His name was Aaron. He was kind and gentle. We started talking about football because of my Steelers blanket and the Steelers shirt I was wearing. He was not a football fan, or a sports fan in any way, but we were able to joke about it and laugh.

Aaron then started talking about the goals for me for PT. I sat up straight and was ready to get down to business. He said that PT’s goals for me were to be able to go home with the ability to go to the bathroom by myself and to get dressed by myself. I sat there, waiting for more to come out of his mouth. Nothing came. I said “Okayyyy….I thought that the goal was for me to walk again…..” He looked at me, tilted his head as if he was saying “Oh sweetie, you’re so cute for thinking that way…” and said “Well, we are hoping for the best, but preparing for the worst. My job is to get you to be able to function at home with the tools that we can provide to you.” I felt a shock come over my body. I thought the whole reason I was in the inpatient rehab was for them to get me to walk again. Never once did I ever consider, for one second ,that I would never walk again. My heart started racing and I instantly felt a really hot feeling flowing throughout my body. So many thoughts ran through my mind in an instant. I was scared that Mike wouldn’t want to be with me if I was confined to a wheelchair. I thought about how embarrassed the kids would be when I showed up at their school, unable to walk. I wouldn’t be able to go on our boat or be able to fish like I had been able to. We had just bought a Tahoe so that we could have room for all of the kids so that we could go camping and take trips. My hopes and dreams were floating in front of my eyes.

I started crying and said “I thought that the goal was for me to walk again…” Aaron looked at me, head tilted, once again, and said “Sweetie, like I said, right now we are hoping for the best but preparing for the worst. I’ll be honest….there is a very high chance that you will never walk again…..” I was speechless. Tears started running down my face.  No words came out of my mouth. All I could do at that very moment was blink twice….for NO!

….to be continued.

 

 

 

“Blink Once For Yes, Twice For No…”

“Jennifer, I want you to blink once for Yes, twice for No!” Tears were streaming down my face. As I laid there on the hardwood floor in the entry way of my house, I looked around. Taylor was holding my hand, telling me how strong I was. Emilee was standing behind him, trying to comfort him and also telling me that I was going to be alright. Mike was talking with the first responders, telling them what had happened. There were two first responders trying to find a vein to do an IV. Why couldn’t I speak? Why couldn’t I move my body? The EMT next to me told me that I had gone into Adrenal Crisis, fainted and that they were trying to help me. He asked me if I could understand what he was saying and told me to blink once for Yes, twice for No.

I was completely paralyzed. The EMT said he was going to do an IO (Intraosseous infusion) so that they could give me medications because my blood pressure was dangerously high. I tried telling him no. I was screaming but nothing came out. My heart was racing. The last time they did an IO, I ended up with Compartment Syndrome, an Emergency Fasciotomy Surgery, where they almost amputated my leg, and went into Cardiac Arrest 3 times. I didn’t want to die. I have things to do and people that need me to stay alive. I quickly looked over at Mike, tears flooding my eyes, the look of terror on my face. “Please don’t let them kill me, Mike! Please say something!” Mike told him that unless I would die on the way to the hospital, they absolutely could not drill an IO into my knee. They loaded me into the ambulance. I could see Taylor out of the corner of my eye, as they were desperately trying to get an IV site going. All I could think about was how scared he must be. He knew that the last time he saw me in an ambulance, my spirit had left my body and tried telling Mike goodbye.

They got an IV going and we headed towards the hospital. They injected me with the steroid that was needed to pull me out of the Adrenal Crisis. My blood pressure started going down and suddenly I could feel my left hand. I squeezed the hand of the EMT who was sitting next to me, holding my hand. “We have movement,” he said excitedly. He gave me another shot of steroids, and then started asking me yes or no questions about how to save my life; we communicated with me blinking.

We arrived at the hospital and I was taken to a trauma room. Suddenly, I had several nurses and a doctor surrounding me. They kept asking me questions and I desperately tried moving my mouth, with no success. I knew they had to talk to the EMT in order to know how to communicate with me, so I blinked rapidly and looked over at him in the hallway, then blinked rapidly again. They looked confused. I did it again. “You want him?” a nurse asked me. I blinked once. He came over and held my hand, telling the doctor and nurses how to communicate with me. The EMT did his best at telling the doctor what had happened. I squeezed his hand when he got some of the information wrong and he was able to talk to me and ask me questions until he got the information I was trying to say right. The doctor tried asking me questions but he kept getting confused, and even laughed when he couldn’t understand what I was trying to say. The EMT then told me that he had to go and that I was in good hands. I started crying. He couldn’t leave! I blinked twice and squeezed his hand as hard as I could. He was the only one who truly knew how to communicate with me. He was my voice. He let me know that he knew that I was scared but that my husband was on his way and he promised me that he would make sure that he could come into the trauma room to be with me. I blinked once and he knew that I felt ok with that. He told me how brave I was and that he was glad that he met me. He said that he knew that I was going to be ok and that he hoped to be able to see me when I got better so that I could say hello to him. I squeezed his hand and blinked once, and then he left.

The doctor then came over to me and started talking. I was not prepared for what he was about to say. “Jennifer, you had an Adrenal Crisis. You passed out and hit your head. Right now, you are paralyzed. I have to send you to get some images done because I think you had a stroke……do you understand? Blink once for yes, twice for no….”

……to be continued.