I believe facing chronic illness forces me to face many thoughts about life. As a child I had less worries and lived in the moments. I used to have moments where I would tell myself, “Wow, I would like to remember this moment forever.” And I would take a picture in my mind and engrave every feeling and record it as if in slow motion. Singing a song on the radio, summer nights playing in the backyard of my childhood home, running in the autumn wind into a pile of leaves, climbing a tree with friends, walking the paths in the woods, building forts in the snow, doing handstands around the schoolyard, family road trips. What magical times they were for me. As I got older I realized it was so easy to get lost in the busy life of work and adult worries. But honestly I have enjoyed so much. I have returned to being so aware of the special moments in my life. Faced with illness, my eyes and mind are open.
I guess being sick has made me more aware of how fragile life truly is. I think sometimes people try to forget about the fact that we are all dying. All in a boat that will sink at some point. We are all just moving at different speeds. Death does not mean we gave up or didn’t fight hard enough – it means we did the best we could with the time we had. We are raised to believe we should grow old and when we find out different for ourselves or loved ones, we start to ask questions like, “Why?” or “Please more time! Please, please?” And I think illness and death are hard subjects to discuss. I find it ironic in a way since it is something we all have in common. We all know what it feels like to lose and we also face the fear of not knowing of when it will be time. Or is it more fearful to have a feeling of when our time might be – might be right around the corner? I believe it is too scary or too sad for some to face. Too hard to face our realities. But with illness, I have learned to look at LIFE. I see it staring at me. And I am not the one asking questions anymore. My illness is the one with questions. “What is it you really want? Because I am apart of you. What are you truly thinking and feeling? Do you see all around you?” Yes, I can see so much more than I have ever seen.
Time is what we may or may not have. I may never know my time, until it is time. But I do know, what we do with what we have is what molds history. It is not how long we live, but the person we are as we are able to live. I take every visit and I tell myself to remember the details, the smiles of my loved ones, the words and stories shared and I let my heart remain open. I forgive those who make mistakes and let go of pointless worries. I try my best to let everyone know how important they are to me. And there are many who I think of everyday…even if I haven’t seen or talked to them in days or years. My friends and family will always be in my heart and on my mind. Some people are meant to be linked in our thoughts for a life time. I will always be thankful for these feelings and the love in my heart, for the fulfilled life I have had thus far. And for the time spent with my loved ones who have passed, I hold our memories tight as I still miss them. We all have our own journeys to take, our own time. I think the hardest part for anyone is letting go of a loved one. But I also believe, these moments are what make us who we are…human. I feel so many people when losing someone focus so hard on the “what if, how, when” part of it. I know I do this. But I also try to think of the good times we shared and the memories. With being sick, I think about these things. I see how hard it is on my loved ones. They can see my truth and see when I am in pain and suffering. But no matter what happens, I know I will be okay as my time comes. I don’t want them to worry about me. I could only hope when my time comes, people will share memories and find comfort in their hearts. Spend time celebrating life more than mouring it. So there it is…just some thoughts I have about life and death and the reality of time and moments.
Thanks for reading my words and allowing me to be apart of your time. Life sure is beautiful surrounded by so many mysteries and unknowns. Remember to take time to live in the moment.
Feeling thankful for today and looking forward to tomorrow – Julie
Living With Dysautonomia (Autonomic Dysfunction) – My Unpredictable Moments of a Disabling Chronic Illness
Oct. 21, 2013
October is Dysautonomia Awareness Month!
I suffer from a disabling condition called dysautonomia (autonomic dysfunction). Dysautonomia is a group of complex conditions, which may involve the entire body and is caused by a malfunction of the autonomic nervous system (ANS). The ANS regulates all of the unconscious functions of the body. My dysautonomia is believed to be caused from a connective tissue disorder called Ehlers–Danlos syndrome (EDS). There are many diseases and disorders which can cause dysautonomia. And dysautonomia can cause a long list of other medical conditions as well. I would like to share a few thoughts in my own words about what it is like for me living with dysautonomia.
My dysautonomia causes symptoms of dizziness, lightheadedness, chronic fatigue, overall weakness and pain, near fainting spells, headaches, chest tightness, blurred vision, ringing in ears, sweats, chills, nausea and vomiting. And also causes issues with inability to be upright (orthostatic intolerance), heart rate and blood pressure regulation, exercise intolerance, eating and digestion problems, body temperature regulation, electrolyte imbalances, malnutrition, dehydration, breathing problems, and inability to sleep or stay awake…among many other problems. Each case of dysautonomia is different where some are affected mildly, while others are completely bedridden and disabled.
My reality with living with dysautonomia- I am very disabled by this condition and I am currently stuck having to live my life laying in bed about 90% of my time due to severe orthostatic hypotension. This means my blood pressure often drops very low upon standing, while in an upright position and sitting (sometimes even remains very low while laying flat). My heart rate may also spike or drop. These issues cause a lack of oxygen to the brain and blood to pool in my legs. It makes the simplest activities seem near impossible at times like cooking, cleaning, eating, walking and even bathing. And even having a conversation, reading or writing while my blood pressure is low seems like a task I am unfit to handle. Another problem I have is called gastroparesis where my stomach does not empty as it should. This makes eating very painful and has made my diet very limited at times. My days come with many unpredictable moments. I feel like I am always having to check something…my blood pressure, heart rate, oxygen levels, blood sugars and body temperature. It can become a bit wearing at times. I have a hard time explaining my situation to most people, mainly because the term dysautonomia is not as well known by many. And truth be told, I try not to let people see me during my worst attacks. A stranger looking at me would have no clue the daily struggles I live with, because for the most part I look pretty healthy. But lately I use a cane, and when needed I have a wheelchair. Even most my friends have never seen my body go into what I call an autonomic attack. I tend to stay home and find it a battle just to get ready to go out for a few hours. And after visiting with friends or family, I tend to pay for it later that night or even the rest of the week.
Most people don’t know I am almost completely home bound and spend so much of my time stuck in bed. On good days I can spend some time sitting up and on really good days, I could go for short walks. How do I explain that one day I am completely bedridden and unable to walk to the next day walking without assistance? How one minute I may be freezing covered in goosebumps with ice cold hands to the next minute covered in sweat? To being able to eat 6 small meals a day and still feel like I am starving to hardly being able to get liquids down and vomiting? To having blood pressure reading of a low 70/30 to being too high of 140/90? A heart rate of 50 to a heart rate of 160? All these changes all within minutes, all while standing, sitting or laying down…my body does not know how to adjust as it should. My “electrical system,” known as the autonomic nervous system has been malfunctioning. And the truth is, most people don’t spend much time thinking about functions which happen (or should happen naturally) – things like digestion, heart rate, blood pressure and temperature regulation. I know many have heard the term “fight or flight” response. The body should react to different motions, activities and gravity without us having to think about doing so. When the autonomic nervous system malfunctions, the body no longer knows how to send the correct signals and the “natural” functions of the body become compromised.
Imagine what it would feel like running 10 miles and think about how fast the heart rate must be. How you try to breathe to keep up with the fast heart rate. Now imagine feeling like you are running and trying to catch your breath while you are sleeping. Imagine all the adrenaline pouring into your heart as your mind is trying to rest, but your body is on overdrive. Imagine waking up and how tried you now feel from running nonstop all night from a restless sleep. Now imagine your body is resting but your mind is on go. You are trying to get some work done, but your heart is telling you that you are still resting. You end up having to lie down. You can’t seem to get your body to move even when your mind is saying go. Your job and housework do not get done. You are stuck in bed thinking about how you wish you could do what you once could. Imagine what it feels like as you recover from having the flu and you are still weak, tired, chills, sweats and hungry but no appetite. And now imagine how it would feel if you felt like that every single day. Imagine you want to be active and social but your blood pressure is so low you can’t seem to move because everything around you is becoming white and blurry and your body is too weak to lift you up because there is not enough oxygen going to your brain for your body to function at an up right position. You are too tired now to focus on conversation and every sound makes your head hurt. The only thing you can do is close your eyes and try to sleep. Imagine putting your arms above your head to wash your hair and you feel your legs and arms become heavy and you feel like you can’t breathe. Your body starts to go limp and your face gets pale. Imagine eating and then within minutes your body gets shaky and cold and you need to rest because it is too much for your body to handle digestion and other “natural” functions at the same time. These are some expamples of what I face throughout my week and they can come and go at any moment.
The autonomic nervous system is like the electrical wiring to our bodies. Imagine having a disease or disorder which causes your autonomic wiring to malfunctioning. Say this disease or disorder is like a person who pours water over an electrical box to your home. And then that same person said, “Ok, now try to make everything in your house work the same as it did before.” Now the disease or disorder has caused dysautonomia. The wiring in the house may still be there, but the wires will no longer work as they did before. Some may send misfirings and some may just not work at all. For me, this is a glimpse into what dysautonomia feels like. Only every moment things can change and it can happen in the middle of any moment, day or night, asleep or awake. There is no controlling the timing or the length.
There is no cure for dysautonomia. There are some medications and options used to help treat some symptoms. But, dysautonomia is a hard disorder to manage. Sometimes the side effects of the medications may seem just as bad as the symptoms themselves. And frequent adjustments seem necessary in many cases. As for me, my dysautonomia seems to be on a decline lately. I still have good moments, and sometimes good days. But as of lately, my dysautonomia as been very hard to control even with many daily medications and IV fluids three times a week. I have seen the devastating effects of this disorder. I am disabled from it, but my mind is still intact. I am still very grateful for the life I have. And even with all the hardship…I am still a happy person. I won’t let this disorder take that way from me too. I have learned to live for the simple moments and for my loved ones. I will never be able to be how I was before chronic illness, but in the end…my love and soul remains the same. And I am grateful for my family, friends and this day.
Sept. 15-21, 2013
It is Mito Awareness Week 2013!
For those fighting the battle and those we have lost!
Let’s Raise Awareness and Find a Cure!
In loving memory of my nephew, Eric Thomas Clement!
We will always love you.
Forever you will be in our hearts, sweet boy!
Aug. 27, 2013
Good News! Having a good day! I got my biopsy results back today from the enlarged right sided lymph node, not cancer! Yay! Very happy. The results suggest an infection, so I will be meeting with a doctor who specializes in infections soon. Hopefully we will get some answers. I did a round of antibiotics for 10 days and my facial swelling has gone away and I have not had a fever for a few days now. My blood pressure has improved, but I am still having my normal low blood pressure reading which come and go due to my autonomic dysfunction (secondary to my connective tissue disease and not because of pancreas or post TP/AIT issues). But feeling thankful I am not currently having very low, lows and I am doing much better with my blood pressure upon waking. My heart rate has been racing while walking due to the humidity and I have been having to use my cane a bit more often. My heart rate increases upon standing and walking, and even sitting at times and then it tends to slow back down after resting. This is caused from a disorder called POTS, another autonomic dysfunction disorder. It makes me very dizzy and causes a good deal of weakness and shortness of breath. I have increased my IV fluid intake and I am now getting fluids twice a week at the infusion center. So, that is just a little update. GI issues have been doing okay. Had some issues with eating, but now doing better. Some swallowing issues and going to have an upper scope (EGD) in a few weeks to make sure I have no inflammation. Overall, feeling pretty good and feeling very happy I don’t have cancer. It is a good day. And I am all smiles right now.
Posted by juliebernal | Filed under Blood Pressure/Heart Rate, Chronic Illness/Rare Disease, Infection/Fever, Surgery/Procedures/Tests, Total Pancreatectomy & Auto-Islet Cell Transplant (TP/AIT)
Aug. 18, 2013
Just a fast update: Forgive me for not being able to respond to emails lately. The last week my blood pressure has been really low. It is low while sleeping, while waking and all throughout the day and night. I am very dizzy and it makes writing and reading very hard. I’m not sure what is going on. A needle in a haystack. I’ve been taking my blood pressure medications to keep my blood pressure up. It normally works pretty fast and lasts for many hours. Unfortunately, it is no longer working. So I am forced to stay in bed. I’ve been trying my best to sit up and do some walking, but I can’t push myself too hard when I am like this, because I don’t want to risk fainting. I believe my body is fighting or reacting to something.
I wasn’t able to get an MRI ordered, but had a head, neck and spine CT last week. Still no news. Had appointment Thurs. with my doctor because I have been having low grade fever along with facial swelling on my right side and tightness in my neck which has made it hard to swallow. He is clueless and no longer knows what to do. I begged him to start me on an antibiotic with hopes it might clear up my symptoms and fever. I rather try to do something rather than do nothing, and we have to start somewhere. Thankfully, Wed. I am getting a needle biopsy of the lymph nodes from my right side of my neck. I know what ever is going on…this is not my normal. So hopefully will have answers at some point. Hopefully soon. Again, thank you for the emails, I will try to respond whenever my blood pressure is more stable. Want to thank all my family and friends who have been such a support and for the kind and encouraging words. Much love! – Julie B.
Posted by juliebernal | Filed under Acute & Chronic Pancreatitis, Chronic Illness/Rare Disease, Recovery & Coping, Research/Support/Hope, Total Pancreatectomy & Auto-Islet Cell Transplant (TP/AIT)
Aug. 9, 2013
I am feeling full of emotions lately. I sometimes have a hard time reaching out and asking for help. I have found that the times I tend to worry are when I don’t know why something is happening or when I have to meet or see a new doctor.
I have learned to adjust with the many health issues I have. I have morned my past life and the things I have lost, and the things I will no longer be able to do or have. Before having my pancreas out, I had hope for everything. I needed to have hope. I still would not change a thing about my treatment and the road I have traveled. But, in the last few years I have had so many things taken from me. Things I always thought I would do and have. In a way, these have been the hardest moments. Many tears and questions. Many worries about if and when. I always wondered if I would be healthy enough to have kids. Now I just wonder if I will be healthy enough to make it to my next doctor appointment.
I was very sad when my doctor told me last year I will never be able to have kids. Again, this year another doctor said the same thing and talked about how it would cost me my life. I was so sad at first, but then I learned to cope with it. And in a way I was relieved, because now I can finally stop worrying about the if and when. I will not ever have kids…but I still have my family, my friends and my life is full of love.
I also used to worry about going back to work. When, when, when will it happen? I stressed myself out worrying all the time about it. I became filled with guilt. When the doctor told me there was no cure for my disease and it won’t be getting better, and he will not clear me to work as long as my health is as it is…I let go of the questions of “when.” I still have some guilt. I thought if I did all the right things, and told myself I was strong and I would get better, then surely it would. Don’t get me wrong, I believe in hope. I really do. But at what point does hope turn into lies and self abuse? I believe we all cope in our own ways. We try so hard to get back to who we were, and neglect to love ourselves for who we are. It took me a long time to admit to myself that I was sick. Truly sick. I have been afraid of letting people down. People who need hope, my loved ones who hurt when I hurt, doctors who no longer have answers.
I find I get upset at things I have no control. Why do some people get better, and others don’t? Why do some people live and others die? Why do so many people have to suffer? Why do we put so much thoughts into what others think?
It has been a hard week. A hard three months. I have no clue…just ideas of what is happening to me. My health is declining and I feel lost because I still have no answers. I know these things are not my normal and I am now becoming afraid I will never have answers and I will have to learn to live like this, and I am not ready to let go just yet of what it was like before. How am I going to cope when I still don’t know why I am having new symptoms? How do I learn to cope with something I still don’t understand? And just as importantly, how much longer can my body truly live like this before it just stops? If I can do something to fix the problem, why is it so wrong to look for the reason? Why am I put down for wanting to survive? I try to be positive. I try to be a forgiving person. I try to be my best. And I try to treat people the way I wish to be treated. I am not complaining. I am thankful for my life and for the MANY things I do have. But, I think it is best to be honest. I don’t want to sugar coat things. I don’t want to give up. I don’t want to suffer. I don’t want to be judged. I DO want to be healthy. And I DO want to fix the things that I can. I WILL always want to understand.
Why does it have to be so hard finding answers? From one doctor to another. And everything about my day is based on the appointment. I will leave in tears or leave smiling. I think some doctors forget that we are people who are looking to find a way to not just live but to survive. We want to be heard. We are already sick and it only makes it that much harder when they tell us they won’t help because they don’t know us, or our case is too difficult, or they don’t think there is anything wrong because we are not what they think of as a normal “sick” person. What does a sick person look like, really? Should I get different treatment than someone with less symptoms? Why should too many or too little symptoms be reason to judge a person? Because of healthcare like this, we become afraid to speak up and we find ourselves crying when we normally aren’t the type to cry. I didn’t even cry when I was told I needed to have my pancreas removed and it was my last option. It was hard, but I didn’t cry. My doctor was kind and caring as he told me…I didn’t cry because he made me feel like my life was worth saving. So why is it, a doctor that I just met can get under my skin and make me feel so worthless, or more so…not worth the time to be helped? What happened to truly caring for others? For me, the hardest part in illness is the way I am treated and the LONG road it takes to find the answers. I know it’s a hard road and some days I would rather just stay home and let the illness take over than go through the stress of being put down or disappointed. I guess it is like anything else in life. But if I never try, then I will never get to where I need to be. So, I keep going. And I have been very lucky to have found some good doctors along the way. Lucky that I am able to have healthcare and able to go to the doctor. But I still wish all doctors were good and caring. But, what can I say, we are all human. For some, it is just a job. For others, it is our lives and wellbeing. I am still alive because of the good doctors. They are out there, and I am thankful.
So, many questions. Many thoughts. This too shall pass. And if it does not pass…then I will learn to adjust. Remember…always treat people the way you wish to be treated. Treat people as if they were your family or dearest friend. We never know what someone might be going through, what they have already survived, what they have lost. So, this week…I am going to take my hurt that I am feeling and I’m going to do something good with it. I am going to go out do so something nice for a perfect stranger. My spirit will not be broken. I still have so much to live for, so much love in my heart. – Julie B.
Aug. 1, 2013
My internist is amazing!!!!! Saw him on Monday. His knowledge really impressed me and gave me much hope. He said he could give me a new medicine for my major headaches I’ve been having, but he said it could cause worse side effects in my case. So we are not going to do that right now. He said the medication would just be a band aide…and he wants to figure out what is causing my recent issues, not just cover them up. I loved that he said that! He listened and truly seemed concerned about my well being and wants to help me. We talked and he feels it would be good to see the neurologist and see if we can get an MRI done – and hoping for a standing MRI (with EDS and what we are looking for, standing MRI is better). But an MRI may be difficult since I have a pacemaker. May need my pacemaker tech there. So, meeting with a general neurologist on Tuesday to discuss my options.
Also, I have two rock hard, pea sized lymph nodes on my right neck, inch above my collarbone. My chills and night sweats started around the same time they showed up a few months ago and now I am having hives all over my back, chest and neck. This has been going on far too long and we believe my body is trying to fight something. My doctor said the lymph nodes should not feel like that and should not still be there, so he would like for me to have them removed along with a biopsy. I totally agree! So, I am meeting with a surgeon for a consult on Thursday. I guess I will be pretty busy next week.
All my food allergy testing came back normal, liver and blood count all looks good. So that’s good. My doctor said he is going to go down the list until we figure this out. It feels so good to have doctors who are open minded and willing to help. I think we have some ideas of what it might be, but I want to wait for the results before going down that road. I’m hoping it is just something simple. But, time will tell. Either way, feeling hopeful for my upcoming appointments and even though I am not feeling 100% right now, I am still feeling very happy and life is good. And on a good note…this past month I have not had much GI pains and my diet has been great lately. So, I am really pleased and enjoying eating some solids. Very happy with that, because I love food! – Julie B.
Posted by juliebernal | Filed under Acute & Chronic Pancreatitis, Chronic Illness/Rare Disease, Dysautonomia/Autonomic Dysfunction & Neuropathy, Ehlers–Danlos syndrome (EDS), Hypermobility (Joint, Muscle & Ligament Pain & Weakness), Sphincter of Oddi Dysfunction (SOD)/Biliary Disease, Sphincterotomy/ERCP/EUS/MRCP
July 28, 2013
Last year my cardiologist tested my ANA and it came back as being positive and suggestive for a connective tissue disease. I was referred to a rheumatologist. When I first saw the rheumatologist he examined me and mentioned it seemed I had pain in multiple joints. Then noted my joints were very loose and hyperextensive. He said, “Your arms should not be able to twist back and be able to touch your shoulder blades like that. Your elbows and knees should not extend that far back. Your thumbs should not be able to bend like that.”
Then he started to lightly stretch my skin on my arms. He said, “Yup, just what I thought, your skin is very stretchy. I believe you have Ehlers–Danlos Syndrome (EDS). It explains your joint issues, GI issues, arrhythmias and blood pressure issues.” He told me EDS can cause dysautonomia, a secondary condition caused from EDS. I had already been diagnosed with dysautonomia (autonomic dysfunction) by my cardiologist.
The more I learn about EDS, the more it becomes so clear to me. I have had the signs my whole life, I just never put the pieces together. I am even starting to believe after much research (and finding a few medical journals believing pancreatitis and EDS may be linked), maybe my pancreas issues could have been a result of EDS and if so, I may just be as rare as they come. After all, I have found very few case of the kind of chronic pancreatitis I ended up with. I had enlarged (three times normal size) pancreatic branches and enlarged splenic artery (vein between spleen and pancreas). I also had a narrow bile duct within the pancreas. But a rare form of EDS has actually been a cause for ruptured and enlarged veins and organs (including the spleen). I was told I would likely die if I did not have my pancreas and spleen removed, and that is why I had them removed (along with an auto-islet transplant) back in 2011. I also had sphincter of Oddi dysfunction (SOD). Could it be possible my bile ducts did not form properly due to a defect in collagen? Sphincter dysfunctions have also been linked to dysautonomia. So, I feel I may need to do some more research on this. Hear from others suffering common issues. And I have found a few other people who have chronic pancreatitis and EDS. I am not a doctor, but I am seeing so many links and similarities. It is interesting to see what may be discovered in the near future.
Ehlers-Danlos Syndrome (EDS) is a connective tissue disorder caused by a genetic defect in collagen and connective-tissue synthesis and structure. Collagen is like the “glue” which holds the skin, joints, muscles, ligaments, blood vessels and organs together. There is no cure for EDS and can vary from mild to life threatening. Common areas affected are hypermobile joints, dislocations/subluxations (partial dislocations) of joints, chronic joint and muscle pain, stretchy skin, easy bruising, skin tears, poor healing and dysautomonia (issues with regulating blood pressure, heart arrhythmias, gastroparesis, gastritis, digestion, bladder, body temperature and the list goes on). And a rare form of EDS can cause arterial, vein and organ ruptures. Though there are different groups or classes of EDS, I have learned that everyone’s case may be slightly different and one person may be classified in one group but may still experience some symptoms from another group. EDS can be very painful and can be very disabling. Read the rest of this entry…
Posted by juliebernal | Filed under Symptoms & Complications
July 22, 2013
I could use some good thoughts. I believe I have been having some kind of allergic reaction to something. Hives, swelling of face and also tight throat. Chills and muscle and abdominal pains, swollen lymph node in my neck. everything hurts. Been taking Benadryl for the last few days and only helps for short time. Called doctor and been instructed to go to ER. I haven’t eaten any new food or have not started any new meeds…I am really taken back by this. To top it off…I am allergic to most allergy medications. Hoping they can help me get some relief soon.
ER said they could not help me much since I have too many allergies to meds. They gave me a shot and it helped the itching some. But after 40 minutes looked like I had a reaction and developed new hives. Was sent home and told to take Benadryl (one thing I am luckily able to take) until my appointment with allergist. Hopefully I will get some answers soon. I haven’t been able to stay awake longer than a few hours these last few days and overall just feeling ill and weak. Thanks for all the comments and emails…I will try to respond when I am on the mend. Just another little bump in the road. Hope everyone else is doing well.
Few days later:
Had an amazing doctor visit. The doctor listened and she even thought outside of the box and looked at the whole picture. Running some labs for food allergies along with checking liver and other things that could cause hives and swelling. And could be an issue with my connective tissue disease. Says lymph node should not be swollen still for this long so should think about biopsy. Also thinks I should look into testing to see if I am allergic to surgical clips inside of me. She said a food allergy would not cause the chills and since it has been over 10 days of this there is definitely something more going on. Loved this doctor. Feel like we are on the right path. Feeling hopeful!
Posted by juliebernal | Filed under Research/Support/Hope
May 29, 2013
Sometimes the best moments are when I forget. Forget about being sick. Forget about the worries in my life…because in those moments…I am creating some of the most beautiful memories.
Today I focused on simple joys. Spent the past few days planning a garden and looking forward to planting some blueberry bushes soon. Spent some time sitting outside and taking in the views of nature that surrounds my house. Even talked to some of the neighbors. It was a great day. And even with the fact that it is a hot spring night and my air conditioning is currently not working and it is hotter inside the house than it is outside…I am so relaxed and at peace right now. I could stress over issues and worry or I could look at the good. I am sitting here writing at 2 in the morning. My windows are open and the night reminds me of my childhood. I had an amazing childhood. Fresh air, a little breeze, smell of fresh cut grass. I truly love this time of year. I feel so alive right now. And so awake (even though I haven’t slept much the past 4 days).
I still know I have a chronic illness. I still know tomorrow may be a harder day. But right now I am so happy and thankful for the simple joys in life. Thankful for the things I do still have. Thankful for feeling alive and for the simple, little moments. I love these moments. The moments where I just know I will always remember how I am feeling, how alive I am and how great life truly is. – Julie B.