Tired of Being Tired

For over five years now I’ve been suffering from extreme fatigue. What I mean is I feel the energy literally leave my body like a gas tank going from full to empty in an instant. The scary times are when I’m driving and nodding off in the car. I can be driving less than 10 minutes and still doze off. Most often my kids are in the back seat. I do everything possible to stay awake just so I can make it home before I collapse. It’s getting to the point where it’s a safety issue. I fear I will crash with my kids in the car and kill us all. This cycle happens at least 4-6 times a month where I can barely keep my eyes open yet alone function. This is not normal.

It takes me days of 12 plus hours of uninterrupted sleep just to be back to “my normal,” which is always being tired. I’m tired all the time even though I take medications and supplements to help with the fatigue, but it doesn’t even touch the issue. So tonight I get to go into the sleep lab and figure what the heck is going on with my energy levels and sleeping patterns.

First sleep study:

I have never done a sleep study in a lab. I have done sleep studies at home but they showed minimal results. As I’m looking over the paperwork and filling another medical packet the one thing that stood out to me was “bring a hat” for the next day. It made me chuckle to think I would need a hat because my hair would look like Medusa. Apparently, you will have so many electrodes on your head and body that it will leave you looking like a hot mess.

Electrodes attached!
Medusa has completed her sleep test.

Well I came out of this study definitely looking like a hot mess! The study itself was easy, but difficult to fall asleep and stay asleep. Funny because it was a sleep study. I was attached to so many wires and heart/breathing monitors it wasn’t very comfortable. To top it off they added a cpap mask to the study. So to sum it all up it was exhausting. The results showed I had mild to moderate sleep apnea and I was immediately prescribed a cpap machine.

Now fast forward 3-4 months and I’ve been using my cpap machine every night. The fatigue is still affecting me and I’m still falling asleep at random times of the day. The sleep specialist has looked over all my levels with my machine and everything is within normal range. At this point I’m starting to get very frustrated because I’m not getting anywhere regarding my fatigue.

This leads me back to my General Practitioner (GP) who then postulates that maybe I have narcolepsy. Now this is where it gets interesting. In order to get that test I have to have done a lab sleep study and show minimal improvement with cpap machine. Well check that off my list. Even though I’m not improving my sleep doctor insists to continue this path and add a stimulant, instead of do the narcolepsy sleep study. When it comes to my health I’ve learned that a band aid is not going to work for me. Having been diagnosed with Lupus has made me very assertive in my care plan. So I do the only thing I can. I go to my GP and get him to plead my case!

My GP finally convinces my sleep doctor to run the test, however I have to do another sleep lab study before they will do the Multiple Sleep Latency Test (MSLT), which specifically tests for narcolepsy. Insert more frustration here!!!! This is where I’m thankful I have great health insurance because these tests are not cheap.

To add further frustration the sleep doctor wants me to stop taking all my meds that cause fatigue. I understand the reasoning behind the med titration but the fatigue has been there even prior to my lupus diagnosis. So they will be taking me off all the meds that help regulate my lupus. I wonder if I could send them a bill of what that will cost me, especially if I go into a flare? But in the end they wouldn’t allow me to take the test unless I did the medication titration. The level of care I get with my specialist is subpar and downright ridiculous at times. I have to make concessions that can potentially make me worse. I’m not very happy about it at all.

Another reason why Idaho Specialists are lacking in health care here. They try to fit you into this diagnostic box they created. If you fall outside that box they have no idea what to do or how to treat you. They try to convince you to take the band aid and never address that there might be another problem. The only way to get results is having one doctor on your side and I’m super thankful I found my GP when I did!!!

So the next step in my journey of battling fatigue is to get these test ran. Fingers crossed I can get answers.

Stay Tuned!!!

How I became An Optimist: Tools that help me cope!

It’s been a year since my SLE lupus diagnosis and the journey so far has been one hell of a ride! The diagnosis took me through a myriad of emotions as if I was grieving my diagnosis and health. My limitations were tested daily and listening to my body was a huge challenge. In fact I still struggle with listening to my body but everyday is a new day. And this is what I’ve come to learn since my diagnosis. Everyday is a new day!

Everyday I wake up thankful I woke up. The one thing we often take for granted is life! I may have a chronic illness but I wake up and get to live life everyday. How we view life can make or break our health and psyche. If this year taught me anything it taught me to live my life without fear and to be genuine to myself. I learned to be strong and never give up. Don’t get me wrong there are days where I want to give up but that is just not an option for me. I want to live and be there for my family and enjoy every waking moment I can with them. I want to make memories and live in the moment. There are times where I tend to get stuck in the past and I can feel the drain it has on my health and metal health. Living in the moment can be difficult but so rewarding in the long run. This past year I have been working on ways to stay positive and live in the moment.

To keep me grounded I’ve developed some tools that have helped me to keep moving forward and to stay healthy mentally and physically.

1. Medical journal and binder: I keep a binder with all my medical files and labs. It helps me track my symptoms and allows me to track abnormal labs. I track my day to day symptoms so I can present them to my doctors during lupus related appointments.

2. Nail polish!!! Yup you read that right I love giving myself manicures so I’ve collected a bunch of fun colors to paint my nails. I change the color once week. This self care routine helps me feel calmer, but also boosts my confidence. Amazing what colors can do to your confidence. Reds make me feel fierce. Bright colors make me happy. Blues give me a sense of calm. And my favorite color is teal which makes me feel like I can take on the world. It’s amazing how a good manicure can make you feel wonderful!

3. Bullet journal: I just discovered the world of bullet journaling and I’m hooked!!! I bought my journal and splurged on pens and colored pencils. I’ve been tracking my mental health with the journal and adding wish lists, bucket lists, and doodles. I forget how much I love to draw and color. It gives me a sense of calm doodling and creating art.

4. Family time: One of the most important things I have realized is that family time is essential. It can be as easy as watching a movie together or taking a huge trip. It can be playing board games or eating dinner at the dinner table. Whatever the moment always take advantage of that time because in the end it goes by so fast you start to miss it. If I learned anything it would be that life is short and memories will last a life time. The time I spend with my kids and family is something we will always remember.

5. Bubble baths: I’ve stocked up on Dr. Teals lavender Epsom salts bubble bath and try to soak at least 2-3 times a week. The lavender scent helps me relax and the magnesium in the Epsom salts soothe my joints.

6. Blogging: I started this blog to help me filter through my feelings and find others to share my experiences with because I know I’m not the only one out there. My hope is to reach as many people as possible and share my love of life and help others get there too!!!

❤️ Elena

Lupus Warrior!!!

GERD what the heck is that?

I was diagnosed with Gastroesophageal reflux disease (GERD) ten years ago. GERD occurs when stomach acid frequently flows back into the tube connecting your mouth and stomach (esophagus). This act of flowing back into the esophagus can cause many issues and symptoms. The symptoms include chest pain, difficulty swallowing, regurgitation of sour liquid or solid foods, feeling there’s a lump in your throat, and gurgling sounds in your throat. I’ve been experiencing all of these symptoms everyday for the past few years. Up to this point I’ve been able to use medication and diet to suppress the symptoms, however it doesn’t appear to be working so well anymore. I eliminated everything that agitated it with diet and used the meds to work on the areas that diet didn’t help. I have been having a hard time with the symptoms so I addressed this with my doctor and he recommended doing another endoscopy and then a Nissan Fundoplication. I know what an endoscopy is because I’ve had dozens of those within the last few years. But I have never heard of the latter. My doctor gave me a link to research the procedure and this is what I found.

Laparoscopic antireflux surgery (also called Nissen fundoplication) is used in the treatment of GERD when medicines are not successful. Laparoscopic antireflux surgery is a minimally-invasive procedure that corrects gastroesophageal reflux by creating an effective valve mechanism at the bottom of the esophagus. See diagram below (Mayo Clinic).

Surgery for GERD may involve a procedure to reinforce the lower esophageal sphincter called Nissen fundoplication. In this procedure, the surgeon wraps the top of the stomach around the lower esophagus. This reinforces the lower esophageal sphincter, making it less likely that acid will back up in the esophagus (Mayo Clinic).

The procedure itself seems easy but my concern is wether the procedure will actually help. I know this is the million dollar question because everyone will react differently. I’ve been under the knife many times but never came to this decision lightly. Surgery was always my last resort. I have done my hardest to change my diet and take my medications religiously only to have the symptoms present daily. I still take the meds (omeprazole and many like it) because they still slightly work by making the symptoms tolerable though annoying. If I stop the medication it gets bad real fast so they still work to some degree. The question is do I continue to take the meds and get mild comfort from it or get the surgery that can potentially eliminate the symptoms? Can I live with the symptoms long term? What happens to my esophagus if I continue on meds and symptoms? Will I end up needing the surgery years later? All good questions right? But I still cannot make up my mind. I need your help! Has anyone had this procedure done? If so what was your experience?

Lupus Warriors-We keep on fighting!

I have been thinking about what I wanted to write this month and realized that May is Lupus and Mental Health awareness month.  These two issues often come together with a Lupus or autoimmune diagnosis.  The reality that our bodies are deteriorating can cause anxiety, depression, poor body image, and much stress.  So for the month of May I want to see how we cope and take care of our health and mental needs? How do you deal with body positivity and keep moving forward to live your life?

Since my SLE Lupus diagnosis I started seeing my counselor on a regular bases because the anxiety was too debilitating at times. New stresses, anxieties, and depressive issues had resurfaced and I felt out of control and overwhelmed with life. I needed something to help me regroup and cope with this next phase of my life.

This new phase of my life has given me a run for my money. My body has changed in ways I would never have let happen. My hair is falling out and most days I feel like crap, but I power through my day because that’s what I do. My self esteem is at its lowest and I hate all my clothes and how they fit.  Losing this control has been extremely difficult for me. I got caught up in what I thought I should look and feel like with Lupus and getting angry at myself because I wasn’t meeting my expectations. I was angry all the time lashing out at my family everyday.  My thoughts were dark and my mood was on the edge of a cliff ready to jump. This is when I had my emotional breakdown. I knew that I had to reign it in or life would go down hill pretty fast.

With the help of my counselor here are some coping tools we came up with: I can take life one day at a time by planning my day. I can take care of myself by working out at my level.  I can choose to eat healthier and make healthier choices.  I can deal with my anxieties and stresses through counseling and using my coping tools. I can limit my stress by learning to say “no”.  I can take care of myself by taking my medication and making all my doctors appointments. I can learn to live in the moment and be okay with my new norm.  I will always have days that will be better than others but feel that if I can do this then I can bare with what I can realistically control.

The thought of gaining control back gives me hope that I can get a grasp on this and start towards a new normal for me.   So all you ladies and gentleman that live with this disease and struggle daily show me what your new normal is for you!   What do you love about the new you?  Here is what my new norm looks like for me…

As a busy Mom why is eating healthy so difficult?

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I’ve been too tired to plan and make meals so I haven’t been eating the best. It’s difficult to eat healthy when you’re on the run with two kids and driving everyone to piano lessons, soccer practice, and school. I spend a great deal of time in my car and it’s so easy to just go through a drive through to grab food. You name it McDonald’s, Burger King, Taco Bell, Blimpie, Subway, and Sonic, we have done them all. All not a good choice for me or my kids for that matter. I try to make good meal choices like order salads, grilled chicken, or a veggie sandwich, but are they really good choices? This mom gig is really hard on me and when I eat like crap my days are long and difficult to maneuver. Most days I’m so tired that planning meals is the last thing on my mind. I can barely get dinner made let alone plan breakfast and lunches too. I’m definitely not consistent on my meal planning.

Part of my problem was not knowing what I could and couldn’t eat. I researched lupus related diets and other healthy alternatives and came across the AIP diet (autoimmune protocol). The idea behind the AIP diet is to eat foods that do not trigger an immune response. You eat foods that decrease inflammation throughout your body. It is applicable to any inflammatory disease. Prior to my Lupus diagnosis I was diagnosed with Crohn’s Disease and it forced me to reevaluate what I put into my body. My Gastroenterologist had me try many different diets. I was able to find foods that affected my gut and joints. What I try to do now is a tailored AIP diet that eliminates dairy, beef, pork, alcohol, high levels of caffeine, nuts, and night shades (group of veggies-potatoes mostly) from my diet because they have shown to cause inflammation and joint pain. Everyone has different reactions to foods so no one diet fits one person. I used to journal what foods caused inflammation and pain. I found that when I eliminated potatoes my joint pain decreased. When I ate them again my pain returned. The struggle for me is finding recipes that are easy to make, yet still have flavor. My goal for the month of April is to meal plan and try to be consistent so we are not eating out as often.  My goal is to make breakfast and lunches for us that are easy to eat on the move.  Stay tuned as I plan my meals. I would love fresh ideas and recipes. What do you do to eat healthy while having busy mom lives? I would love to hear how you juggle being a busy mom and eating healthy.

Sometimes its the little things…

I’ve been battling my body for about 9 years now and well exercise just wasn’t at the top of my list. To be honest I hate to exercise because I would always feel worse. It would take me weeks to recover that at some point it was useless to me. The pain I would experience was awful it was torture. Let’s fast forward to now, my muscles are weak, my muscle mass is gone, and exercising still hurts. What really made me reevaluate my activity was not being able to do a single cart wheel with my daughter. Yeah yeah I know I’m older now but my arms couldn’t even bare the weight. My arms buckled and I fell.  I was so disappointed and a little embarrassed that I let myself get this bad.

You see my idea of exercising was the hard core types of exercises: kick boxing, heavy weights, high impact cardio, cross fit type exercises.  What I didn’t know was that these were not the only types of experiences out there. Also I had no idea that some exercises are better for you than others. When I was younger I could handle the hard core stuff, but as my body began to crumble so did my ability to workout. I never once said to myself is there another option forGymontherun me? Well apparently there is! It took me years to figure this out but I got it eventually.  I started looking at different kinds of exercise from cardio to yoga to Pilates and found that what I needed was an exercise routine that was low impact but also focused on my joints. Too much stress on my joints made me hurt badly. I knew that if I wanted to get back into shape I needed to listen to my body and go at my own pace even though I knew it would be slow. I researched gyms, trainers, and Cross Fit gyms but didn’t find what I was needing. Don’t get me wrong those places help a lot of people, but it wasn’t conducive to what I needed and what I was looking for. In my experience the trainers I talked to had no idea what lupus was or even how to help me. So I did more research and found a trainer that lives 5 houses down from me, I kid you not. He had me come in for a consult and mapped out my disease, symptoms, diet, and tailored an exercise routine that is more focused on my joints and my level. We meet every week for 30 minutes and we work with resistance bands and low impact cardio. This and three days a week of low impact walking has made life livable again for me. I started training around October and my joints have stop hurting due to exercise. I found something I can do to stay active and live without the agonizing pain. The one thing I never did was listen to my body, Bryan taught me to listen and do what I’m capable even if it’s low impact walking. He made it okay to work at my speed and level.  I cannot wait to share what I have been working on with him!

I am not one to toot my own horn because I don’t like being center of attention, but today was a huge achievement for me.  I was finally able to climb Table Rock trail head!  You see, Boise is surrounded by beautiful mountains and trails, it’s an outdoors man dream come true. I have never enjoyed them because I couldn’t make it to the top ever. Well today I did it!!!!! My husband and I climbed it together, we listened to music, talked about life, our kids, and my disease. He told me he was proud of me and how I’ve continued to amaze him with dealing with my lupus. It’s not an easy disease to deal with and most days suck, but today I’m going to chalk it up as a victory in my books.

Things nobody tells you about parenting and chronic illnesses

My morning starts with me forcing myself out of bed because I have to get the kids ready for school. Lunches need to be made and backpacks need to be packed and then of course there’s breakfast. My kids have learned to get their own breakfast because they know how hard it is for me to get up. Then my daughter can’t find her shoes or her gloves. The list goes on, but all I can think about is how I’m going to survive today because I feel like crap and I’m exhausted. My joints hurt and the nausea is kicking in. Did I mention I’m exhausted! I have to take kids to school, go to work, pick kids up, head to after school activities and do all this without getting any rest in between. Oh and make dinner when I get home from the kids activities. I’m driving kids to school and feel an intense agitation because all I want to do is go back to bed. My joints are screaming at me and I’m nodding off while I’m driving. I crank up the music to help me stay awake. It’s going to be one of those days where I’m fighting myself and my body. My mind wanders because I didn’t sleep well and I realize I forgot my lunch and medication. (Insert cuss words here) I don’t have time to turn back and retrieve them (shit). My day is officially ruined.

I get to work and contemplate taking some nausea meds but decide against it because it makes me super sleepy and I’m already nodding off. I try to work through the fatigue and keep myself busy but that’s not helping either. Why did I forget my meds I silently scream to myself. I think about calling my husband and see if he can grab my meds but quickly dismiss that idea. I was the one who forgot them that’s on me. This is where I mentally beat myself up. I can’t even take care of myself. More emotional beating on myself. I suck at this I tell myself while I’m at my desk trying to work. I suck at everything I tell myself. And this is where my illness beats me at times. Having a chronic illness is no easy feat. I’m constantly fighting my body and mental well being. I sink into a quiet sadness while at work and hide in my office area so I don’t have to see anyone. I’m on the verge of tears but keep those squashed because I don’t want to draw attention to myself. So I silently suffer alone. I do this a lot.

Finally my work day has come to an end. I’m relieved but not super excited because I still have at least 5 more hours of shit to do. As I head to pick up my kids I mentally prepare myself to be around other parents. I put on a smile and act as if everything is great even though my joints are still screaming at me. I put on an Oscar worthy performance as I chat and mingle with parents at the pick up spot. No one knows I’m in pain.

By the time we get home I’m so exhausted that I’m cranky with my kids and husband. I just want to scream at the top of my lungs that I just want to go to bed and rest. But I can’t. A mother’s job doesn’t end.

The one thing I had to change as a mom with chronic illnesses…

My health at its lowest, I lost over 70lbs

Having an autoimmune disease is living with constant pain, brain fog, and stress. Your body’s immune system is attacking healthy cells in your body by mistake. There are more than 80 types of autoimmune diseases, and some have similar symptoms. Getting a diagnosis can be frustrating and very stressful. Often, the first symptoms are fatigue, muscle aches and a low fever. The fatigue I experienced was so bad I was falling asleep while driving my kids to school, sporting events, practice, piano lessons and the list goes on. It didn’t matter on the time of day I was exhausted all the time. How can I function as a mom if I can’t even stay awake during the day. I was so scared of crashing with my kids in the car. My daily battle with joint pain and brain fog didn’t make it easier either. I was a mess and falling into a deep depression because I was failing at being a good mom.

When I got my diagnosis I went straight to the internet for answers and immediately got overwhelmed. There was so much information out there that it was hard to take it all in. I just needed the basics to understanding what I was dealing with at first. The internet can give you so much information at once it gets mind boggling at times. I had to break it down into parts because I was getting overwhelmed and stressed. Which is not a great combo with this disease. High levels of stress can cause a flair, which is an increased level of symptoms of the disease.

Once I had an understanding of the disease itself and i knew it wasn’t a figment of my imagination of being a hypochondriac. Something was physically wrong with me. I set out to find out everything about autoimmune diseases.  What truly helped me was developing a plan by understanding what my symptoms were and what caused me to flair. I began documenting everything: foods I ate, stress levels, anxiety levels, fatigue, when I went to bed, water consumption, and on and on.  I was hitting a wall because there was no real pattern I could discern from documenting. But it gave me perspective on my symptoms and my emotional state. I wanted to treat my diseases without medication but that was not a reality for me in the end. I had to get my symptoms in check if I was going to survive motherhood. I began investigating treatments, diets, medicine side affects, homeopathic remedies, stress reduction techniques, exercise, etc. By doing this it helped me generate questions to ask when I saw my rheumatologist and internal medicine doctor. I would write down my questions as they came up in a journal.

I feel that collaborating with my doctors was an important step for me because I needed a team of physicians that was there to support me. I needed them to listen and help me develop a treatment plan that fit my symptoms and emotional needs. My goal then was to create a team that consisted of an internal medicine doctor who would then oversee my specialty physicians. All my specialty physicians report back to my internal doc so he is up to date on my symptoms progress, meds, and any tests or blood work. I developed this team in late July and have been doing better physically because they are not repeating anything treatment wise. I’m finally getting the care I need and want. It was a lot of work finding the right doctors but well worth it in the end. I literally shopped around for doctors till I found the right fit for me. This is important to know because doctors are providing a service in a sense and you need to shop around until you find a team of doctors you can trust. I knew I wasn’t going to be able to do this by myself. I hate asking for help but I hated the thought more of me crashing and killing us all because I didn’t take action to care for myself. In the end being diagnosed with lupus really forced me to question and change my ways. If I wanted to be a good mother to my children I had to make my health my number one priority. And yes that meant prioritizing above my children too. I’m no good to them if I’m sick all the time. This was a hard realization for me and even harder to initiate because my kids are my world!

I would love to hear about your experiences with doctors and how you have advocated for your health.