I may not be perfect but I still know how to enjoy life and make the most of it. Below are a few pictures of some special times over the past year. Even with my illness…I have been truly blessed.

For awhile now I have been a little hard on myself as far as my health and the reality of how much time I truly need to be resting or stuck in bed and what I am able to truly do. Working as the doctors say is not an option for me because my health is that unpredictable. One minute I can be visiting with someone laughing and then the next minute I will need to sit down or go home and rest or even go to the ER. And when it hits…taking action is key. This is my life, and my life is my own and I learn to adjust as time goes on. I may not be able to do as much as I always pictured for myself, but I still push myself to take trips and see new places. It’s not always easy and takes extra care and planning…and I never know if I will be able to do something until the day of. But this has not stopped me from trying to reach some of my dreams. Even if it means I need to walk with a cane or have someone push me in a wheelchair at times, or even go home early. I still try to make the most out of my life and I’m much happier for it. My mom once told me how proud she was of me for being so strong. And even though everyday could be a hard day with struggles…I still make an effort to get out and do stuff when I feel well enough. Even if I have to push myself hard for a few days and rest for a week or month in return…she is proud of me for still trying and still making an effort towards living life to the fullest. And I got to say…it is in those moments which remind me of why I fight so hard to stay alive…because life is fun and beautiful and filled with so many wonderful things and wonderful people. I may have a chronic illness but I think big and still have dreams. I love to see new places, visit family and friends, surrounded myself with nature, architecture and art. And everyday with my husband is a good day. He makes me smile even through the hardest moments of my health issues. And I’ve also learned that it is okay not to be okay all the time. I shouldn’t beat myself up when I am too ill to get out of bed. After all, I have been through a lot and I am trying my best to be my best. What more could one ask for? In a few more days it will be two years since having my TP/AIT (pancreas removed and transplant) and I am thankful for today…and so happy that I made the decision to have the surgery done. I am so thankful to be here. Smiles and well wishes to everyone out there and hope my pictures bring some happiness to you.

Was admitted to hospital May 3 for pain, high white blood cell count and fever. Looks like I had an infection somewhere. I had a good team of doctors and staff working to find answers. Thankful for always being in such good hands.

After few days the infection and fever were controlled and I was able to go home. My results came back normal as far as any GI infections…so I was very pleased and happy. I felt it was maybe caused from an ear infection or chest issue since it was a different kind of pain then my normal flare up pain. Spent a week on antibiotics and a full week of recovery at home in my own bed. Had a few asthma attacks and arrhythmias to deal with, but overall did really well and eating well now. But I lost five pounds…which I’m sure with a little work I will gain back very soon. Life comes with little hiccups at times. And I just always remind myself how lucky I am and how thankful I am to be alive and…I still have a smile on my face. Thanks for all of the support and prayers. You all are amazing. Hope everyone is having a wonderful day. – Julie B.

I feel like I have been a bit busy lately. I’ve been trying to balance rest, doctor visits and the most important thing…life and living. I’m sorry I haven’t been online much lately. I had to take a break. But I did want to give a quick update. I’ve been getting weekly fluids at a local infusion center to help keep my dehydration and blood pressure in check. My port has been wonderful and I’m so glad to have it. The staff at the infusion center has been wonderful and the other patients whom are also hooked up to IV poles all seem to be so nice. We all sit there in our recliners and smile and say hello to each other. Since it takes 4 hours to get my two bags of fluids, I tend to curl up with a blanket and take a nap. I wake up for a few jokes here and there.

I feel really lucky lately. I’ve been able to spend some time with my family and a few friends. Family and friends are so important to me and with having a chronic illness, it makes it hard to keep up with everyone at times just because some days it is too hard to get out of bed, or to move or when my blood pressure is low…too hard to even have a conversation. It’s been a little hard to even respond to emails. I just want people to know if it takes awhile for you to hear from me, it is because I may just be having a hard day or hard week. But, I do appreciate the comments and I will try my best to respond and I do think of you all often.

A few weeks ago I had a really hard week. I was too ill to even get out of bed and couldn’t even make it to the three doctor appointments I had that week. But then I had three great days in a row. I find it interesting how my symptoms can come and go in a blink of an eye. I feel like I have been coping really well with my illness lately. I’ve come to peace with it. I’ve let go of all the worries and fear of the questions I have not yet been able to answer. I’ve seen that worrying about my time is just a waste of time. Now, don’t get me wrong…I am still fighting and doing everything I can to try to overcome this. But, it is not my main focus of life. The moments I can surround myself with the beauty in this world…those are the moments I live for. I am not fearful of what is to come, but I look forward to the time I do still have here on Earth with the ones I love.

After much thought and talking with my family…the question I asked was, “What is more important – living a long life with extreme suffering and putting my body through more surgery and adhesions or living a shorter life where I can use the time to focus on family, friends and enjoying the good days I still have?

I have always been a proactive person when it comes to my health. The answers have always been clear to me. Having my pancreas removed was an easy decision. I wanted to have it done. I researched it and the results and I knew what I was getting myself into. I’m not going to lie…I was very scared when I followed the progress of one of my friends when she went through it a year before I did. I cried many days and had a hard time wrapping my mind around the idea of the surgery. It was a big one. But when the time came for me…I was ready and was filled with hope and good feelings. And I am glad I did it. But now I am facing a different illness and it hasn’t been as easy for me to see the clear answer. There is no cure for this. It is not something that will clearly get better with surgery. It may help symptoms but does not fix the problem. With having my pancreas removed…it removed the problem…the problem was a “sick” pancreas. It was not a cure but was a really great treatment option and I feel I did well with it. I am not perfect but it sure beats the pancreas pain I used to have. But with my autonomic dysfunction, there isn’t a way to fix the fact that my body doesn’t work as it should. I can’t fix my stomach, GI track, bladder, heart and the nerves which control my bodies functions.

I just feel like I am in a different place with my health. I know so much more about my body now. I know my body creates a ton of adhesions anytime I have open surgery. I know I have been advised NOT to have any more surgeries unless it is a matter of life and death…but the suggestion of a gastric pacemaker was discussed. I know I do not do well with recoveries now because my body is just too weak and has too many problems. So the question is, the gastric pacemaker? I would have to have it placed with open surgery. It likely won’t fix my stomach’s emptying but may help the symptoms (nausea and vomiting). But won’t help with pain. There is only a 50% chance of relieved symptoms, but if you take pain medication, it drops down to only 20%. I’ve heard many say it has helped them greatly and they are glad to have it. I’ve heard others say they don’t notice a difference and had it removed after a year and still end up on a feeding tube. With surgery I run the risk of creating more pain. I am still dealing with pain from adhesions from 6 months ago with my last surgery…the surgery which removed adhesions. It hurts to move, bend, sit and even laugh at times. Is it worth the risk to help some symptoms in exchange for more pain on top of my current pain?

So I finally asked my family their thoughts. I was surprised. The answer was: quality of life trumps length of life. That made me feel so much better about NOT getting the gastric pacemaker. I know the gastric pacemaker maybe right for some people and it’s good to know the option is out there, but of me…I don’t think it is worth it. I don’t think my body would respond well to it. I just feel like all I do is go to the doctor. Instead of taking a week to go out of state to talk about another surgery and have tests I’ve already had done and to talk about my disease which has no cure…I think I would rather take that week to spend with Julian (my husband). Maybe go on a trip together that is on our bucket list. Maybe I won’t be able to do a lot on the trip, I will likely need to take it easy and rest…but it sounds like it would be better to take the energy I do have and spend it doing something fun. I really want to take a little break from all the doctor visits, illness and try to focus on life some.

I was impressed to hear my family agreed. And they even said they were worried about me having another surgery and thought my body was not ready to handle anymore right now. I was so worried that by me saying I don’t want more surgery, that they would view it as giving up. But they viewed it as me trying to live to the fullest. I felt so relieved to hear my family’s views on my illness. Spent time talking about everything, and it was not an easy talk but it was a good talk. And now I feel at peace. I feel happy, I feel like I have so many things to look forward to. I’m not going to put a time limit on my life, because I rather put my energy into smiling. And truthfully…I am not afraid of death. It is part of life. And I may even live a very long life. We don’t know. But I do know, we can’t spend our time always worrying about if and when…because then we forget to spend time thinking about what we are fighting for in the first place…the fact that life is a gift. Life is meant to be lived. And I plan on living it the best way I know how for as long as my body will allow. With no regrets and being thankful for all the things I do have…a loving family, amazing friends and life filled with everlasting memories.

Well, I’m about 3 weeks out from getting my Power Port. I’ve been to the ER twice for dehydration since having it and they were too afraid to use it yet. But I was able to get it flushed last week and the blood return was good and the nurse said that it was working great. All is healing nicely. Now just trying to get a home nurse and trying to get it set up so I can actually use the port for IV fluids…the reason I got the port in the first place. This has been a bit harder than what I was told it would be. Being sick is like a full time job. Being a self advocate is important. My gastroparesis has been giving me a hard time lately causing me to dry heave daily and my diet has become compromised, thus I am becoming very dehydrated and weak. IV fluids do seem to help get me back on my feet for a few days…so I am thankful for that. I’m going to keep on plugging along. There is no cure for gastroparesis only treatment. But my gastroparesis consult and some tests at Cleveland Clinic will be in May. So I’m feeling hopeful. Hope everyone is having a good day today.  - Julie B.

Yay!!! My mito labs came back normal! Best news I’ve gotten in a long time. I’ve been told there is still a chance of having the disease and can be seen in a muscle biopsy…but I’m not ready to go down that road yet. As for now…I am happy, happy.

I got my Bard Power Port put in yesterday. Surgery went REALLY well. The doctor and staff were amazing and they said it couldn’t have gone any better. I did end up going to ER last night due to nausea and pain…but I believe my issues were caused more from my gastric delayed emptying and not from the port or surgery. So, I’m feeling much better today and just so thankful for each day.

Tomorrow I head back out to Nashville to meet with an urologist. Bladder issues and urinary tract infections (UTI) can be commonly seen in patients with autonomic dysfunction. I’ve had a few UTIs over the past six months…along with some kidney stones. So my doctors wanted me to discuss this with the urologist and maybe have a bladder function test done to see my output.

Also, my GI wants me to go to Cleveland Clinic to discuss my gastric delayed emptying issues and about getting a stomach pacemakers put in.

A little quote of mine from yesterday, “woke up to the sound of birds singing. makes me want to skip. live for today…and smile away.”- Julie B.

living happy means being grateful for each day and seeing how good we have it…even when times are hard. there are times to cry…but there is ALWAYS time to smile.

never give up on hope my friends.  - Julie B.

This post is well over due and it has been too hard to write until now…it saddens me to say my amazing nephew, Eric – who was 5 years old – passed away a few months ago (Nov. 26, 2012) from mitochondrial disease (Mito)…a horrible disease that can cause any organ to fail at any given time. This is the disease that I talked about in an earlier post that my doctors wanted me to get tested for…and I should have my results within days.

Special time together. Me with Eric just weeks before he passed. Eric, my bother and I went on a trip to Houston to visit Eric's Mito doctors.

As an infant, Eric started to lose weight and was diagnosed with failure to thrive. He had GI issues and had a G-tube placed as a toddler. He had kidney issues, seizures and many other challenges. He had to take many daily medications, had many surgeries, tests, doctor visits and hospital stays. He had to listen to his body and rest when he need. But even with all the hardship, he never complained and was always ready to play, laugh and smile. He loved his family and always knew how to show it. He was the strongest and most inspirational person I’ve ever known and he filled my heart with so much love…a love I never knew before. He always knew how to make people smile and in his own way, he showed many how to have hope.

I remember being with him in the hospital a few years ago as he was recovering from a surgery…the nurse was going to draw some blood. I sat next to him and held his hand and I said to him, “It will be okay, it will be okay.” He focused on me, looked me in the eyes and stayed calm. My nephew, my little kiddo was such a brave little guy. About a month after that day in the hospital, my brother came by with my nephew to see me…it was a few days before leaving to have my major surgery and transplant – TP/AIT. My nephew took my hand, looked up at me, smiled and said to me, “It will be okay, it will be okay.” It brings tears to my eyes thinking about that moment. That moment was the moment I was no longer afraid. He was only four years old at that time and had a limited vocabulary and was going through so many health issues himself…but he was so smart and always knew just the right thing to say or do in every moment I spent with him. I gained so much strength because of him.

My last day with him was on Thanksgiving – just a few days before he passed. I watched him running around, laughing and being a kid. It was so fun to watch. By the end of the day, I was tired as I often get, and I had to go lay down and rest. Eric understood me in that way, because with mitochondrial disease, it drains your energy and resting is important. Even though there were many people at my parent’s house that Thanksgiving day, Eric noticed I wasn’t in the room. So he went upstairs to find me. He climbed into bed with me. Laid next to me and pointed at the stars on the ceiling. The stars I placed there as a teenager. He said, “Look at the stars. I like the stars.” My husband came up to check on me. He came and knelled down beside me. We looked at the stars all together and it was a special moment. Eric and I took a little nap.

Eric was only two years old here. We spent the day with family and playing. And then Eric and I took a little nap on the floor together.

(Since Eric was a baby, this would be something we would do. We would sometimes nap on the floor and share a pillow, rest on the couch next to each other – because we both had illnesses that would require us to rest…it meant we would get tired around the same time too.) After our short nap on Thanksgiving, my brother came up to get little Eric to take him home. I got up and walked down to the door with them and gave him a kiss on his head and gave him a hug. As he walked out the door, I said, “I love you.” I remember him turning and smiling, and he said, “Love you.” That was the last thing he said to me. Sweet boy, I miss him everyday! But his memories fill my heart and I think about how he was such a happy kid – making jokes in his own way – and his laugh was contagious. He had many little sayings…and even today I find myself repeating them…and it makes me remember him. And I’m so sad he is gone but I can smile when I think of him…thinking of all the beautiful memories. And he is now free from mitochondrial disease. No more pain and no more medications. And we like to think he is riding a train up above…smiling…watching over us.

There are many children and adults suffering each day from Mitochondrial Disease. My heart is with each of these patients and families. And if I may ask, please keep my brother and my family along with Eric’s mom and her family in your thoughts. In the memory of my nephew and the many others suffering from mitochondrial disease…I will always make it a goal to raise awareness.

Below is a drawing I did three years ago of my nephew, Eric.

Eric Thomas Clement

If you would like to help raise awareness and help find a cure for mitochondrial disease…to help other families like mine…to help bring hope…donations may be made in memory of Eric Thomas Clement to the United Mitochondrial Disease Foundation, 8085 Saltsburg Road, Suite 201, Pittsburgh, PA 15239 or you can donate here.

Thank you for all the thoughts and prayers. Remember that each day is a gift. Eric had to live with a hard disease, but he made the most of each day…his last day with us…he woke up smiling and ready to play. He went peacefully in his sleep…he seemed to be doing well and then he had a seizure that stopped his heart. It was a shock to us all. Eric loved life, he loved being a kid and loved being with his family and friends. Remember to always tell the people you care about, that you love them and create memories because life is short. Much love to all.

sending thoughts out today to all the patients and families suffering with any form of pancreatitis, SOD, cancer, recovery or illness. remember you are not alone. and there are many people who love you and who hope to see you get through this. let there be peace in your heart, hope resting in your mind and the willpower to keep on fighting. all my thoughts to you today…

And a thought for today…never judge a person…because we may never know what roads they may have walked. I like to tell myself everyone is dealing with their own battles…and there are many others who have it worse than me. People see me and at times they point out that I’m thin or how great and healthy I look. They don’t see me and my truth. The truth…I would rather have more meat on my bones and be healthy…I would rather have children and a job. I would rather be able to live a healthy, normal life…but I wouldn’t change who I am and the people I have in my life. Life is still good, even with illness. But, people judge. We all do it. But the truth is…we never know what someone is going through, where they have been, and where they will be going. So treat people the way you wish to be treated and remember to smile when you can. And take time to listen. Put yourself in another’s shoes. See how easily the cards could be reversed. I never wanted people to feel sorry for me. I don’t allow myself to even feel sorry for me. It is one step at a time, cry and move on…a giant leap past the hardship. I hold memories but I try not to dwell on them. I look at the good when there is bad…because it comes down to facts…and the fact is…I am still alive. I am still here on this Earth with you. We don’t get to say when or how somethings happen. Sometimes we find ourselves on the road…and we have nothing left to do but walk…moving forward into the night…only to do it all over again. This is life. And I am thankful for today.

What is hypotension?

Hypotension means low blood pressure. Anything below 90/60 mm Hg is considered to be below normal. And anything above 140/90 mm Hg is considered high (hypertension). Usually a good blood pressure reading for an average adult would be around 120/80 mm Hg. There are two numbers involved in taking ones blood pressure. The top number (systolic) is the amount of pressure when the heart is contracting. And the bottom number (diastolic) is is the period of time when the heart refills with blood after contraction occurs. For a low blood pressure reading, it only takes one number out of the two numbers to be low. So anything lower than 90 for the top number, and anything lower than 60 for the bottom number is considered hypotension. When blood pressure drops, then the heart, brain, and other parts of the body do not get enough blood. And a significant drop, even as little as 20 mm Hg, can cause problems for some people. In severe cases, low blood pressure can be life-threatening.

Some causes of low blood pressure can range from:

Dehydration, serious medical or surgical disorders, autonomic dysfunction, hypoglycemia, certain medications, life-threatening allergic response, severe infection, changes in heart rhythm (arrhythmias), fainting, heart attack, heart failure, blood loss and shock.

Some symptoms may include:

Blurry vision, confusion, dizziness, fainting (syncope) or near syncope, light-headedness, sleepiness and weakness.

My life living with Hypotension:

This week’s blood pressure readings for me…they have been low! Top number should be between 90-120 and the second number should be between 60-80. The third number is my heart rate.

My low blood pressure comes and goes, sometimes lasts for weeks and some times just a few days. I never know when it will hit. Sometimes I wake up with low blood pressure and then it just stays that way. Sometimes I get it from standing, walking or eating. Sometimes it happens from taking a shower or if I’m in the heat outside or if my body overheats. Sometimes my blood pressure drops when I’m in pain or have inflammation. Sometimes after waking up from surgery and even while in the hospital for a few days (even while I’m on IV fluids). Sometimes when it happens when my blood sugars drop or I have an infection. My blood pressure dropping has been happening for awhile – before I was ever on any medications and before having my pancreas removed or before having any heart surgery…it has been here and wasn’t caused by any of those things. And the blood pressure medications help some but not all the time. This hypotension has become apart of my life. I’ve tried leg compression stockings, drinking extra fluids, eating extra salt, two different blood pressure medications and even getting weekly IV fluids. Still, this life I’m living with hypotension is a bit unpredictable. My symptoms include a bit more than listed above. I get things like eye pain and light sensitivity, a hard time focusing or talking, blurry memory, chest pain, ringing in my ears, nausea, tightness and sharp pain around my head and in my neck and jaw, sleep for hours and have a hard time waking or staying wake and my legs and arms stop working and I become very pale and a bit limp. I have to stay in bed on the days I have low blood pressure. And when it is bad enough to the point I can’t take any more…I go to the ER. So, that is it…that is the best way I can describe hypotension and also what it is like for me to live with it. It is what it is…I don’t enjoy living with it, but I do enjoy living…so I learn to adjust and learn how to take the good days and make the most of them.