Posted in #CRPS, #Gastroparesis, #RSD, Chronic Illness, Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy, Gastroparesis, Inspiration, Invisible Illnesses, Life Lessons, My Life, Rare Diseases, Strength

The Struggle

After being diagnosed with a rare chronic pain disorder known as Complex Regional Pain Syndrome over 22 years ago, I struggled for years to find balance and accept my new normal. I liked the old me. The fun-loving me that enjoyed camping, hiking, and playing volleyball. You see, when health challenges turn your life upside down and you can no longer do the things you once enjoyed, you lose a piece of yourself. We, as people, tend to identify ourselves based on what we do. When introducing ourselves we describe ourselves based on things such as where we live (I’m an American. I’m a Kentuckian.), our job (I’m a teacher. I’m a doctor. I’m a police officer.), organizations or groups we associate ourselves with (I’m a Christian. I’m a veteran. I’m a member of a club.), and things we do for fun (I’m a skier. I’m a golfer. I’m a runner. ). When health issues take these things out of our lives, it’s Like our identity has been stolen and we no longer know who we are. We grieve the person we once were and feel lost in our own bodies.

After struggling for several years with chronic pain and who I was, I realized my past life of hiking and playing volleyball was probably over. I began doing craft type activities and found a new love for painting and knitting. I was beginning to accept my new normal, when gastroparesis entered the picture. I could still paint and knit, but now I couldn’t eat. My favorite foods…fried chicken, biscuits and gravy, spaghetti… they all made me vomit. My weight began to drop quickly, I became weak, and my legs cramped. I watched as my fingers and toes began to look a grayish color and my skin became formable like playdough. Again, I began to struggle. I didn’t know the pale sickly woman in the mirror looking back at me.

New doctors were added. A picc line was put in so I could be hydrated with IV fluids at home. A gastric stimulator was implanted to help my stomach work more normal. I saw a dietician. Gastroparesis, like CRPS/RSD, does not have a cure. The doctors treat the symptoms in an effort to improve quality of life. This time I adapted to my new normal a little more quickly. I’ve accepted that fried chicken, biscuit and gravy, other fatty fried foods, fresh vegetables and fruits, foods high in fiber, and spicy foods are probably never going to be a part of my diet again unless I want to be sick after eating. I’m learning to make my own veggie burgers and meat substitutes using various overcooked vegetables, protein powder, and gastroparesis friendly herbs. It’s not what I grew up eating, but I’m learning to like my new, healthier food choices.

Over the years, I’ve come to realize that life is a series of events and if we want to make the most out of life we must be flexible and willing to try new things. We have to learn to let go of the past and embrace the future. Just this week I found out my recurring urinary tract infections are probably being caused by a bladder that doesn’t empty properly. I don’t know what will become of that. I’ve just started seeing a doctor for it and more testing is scheduled. I’m also having recurring ear infections that don’t want to go away and am scheduled to see an ear, nose, and throat specialist. I’ve accepted that whatever becomes of it all, I’ll deal with it as it comes along. Yes, I know there will be more struggles as I try to adapt to my new normal once again, but this time I feel more prepared. I’m not worried about what might happen. I’m just going to enjoy the moment and live life as it comes.

Yes, when you live with chronic health issues, life is a struggle. However, your attitude and how you approach those struggles plays a huge role in the enjoyment you get out of life. You can choose to live in denial and try to run and hide from your problems or you can face them head on as they come and problem solve to find ways to live life to the fullest with those health conditions. Me, I’m choosing to accept my new normal and live the best life I can no matter what I have to face. I know there will be more struggles ahead and I’m sure there will be times of grief as I lose my identity and have to find myself again. I’ve learned that no matter how weak my body may seem at times, that weakness has made me stronger as a person.

For those struggling with new health conditions and the grief associated with not being the person you once were, I encourage you to continue to move forward. No, you may never be the person you were before, but there’s nothing wrong with the new you. You may have to do like me and find new interests and hobbies, but the important thing is that you keep moving forward and striving to live the best life you possibly can. You may feel like your life is over, but it isn’t. You’ve just come upon a road block. With time, you’ll find your new path and continue through life in a different direction. As hard as it is to wade through the process of grieving our old self, the thing that has helped me most was meeting others who are traveling down the same road. Their courage and strength helps me to continue to look up and move forward. I hope I can inspire someone else to do the same.

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Posted in Chronic Illness, Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy, Gastroparesis, Inspiration, Invisible Illnesses, Rare Diseases

Humor on a bad day…

The¬† past couple of days have been rough with my complex regional pain syndrome and gastroparesis. I’ve been more nauseated. I’ve vomited more than common. I’ve been in lots of pain. I’m exhausted. I’m not looking for pity… just stating the facts. When faced with these not so good days… which I’m forced to deal with on a weekly basis, I have to make a choice… do I lay in bed and cry because I feel miserable or do I find something to do to keep my mind busy. I’m not ashamed to admit that there are days I cry because I don’t feel like doing anything else. Some days I just sleep because I don’t have the energy to do anything else. However, some days I don’t feel like getting out of bed so I spend the day in bed with my tablet searching for inspiration. It never fails that Pinterest has something I’ve never seen before that brings a smile to my face.

Living with gastroparesis, I’m constantly having to defend my choice not to eat when I’m at church dinners, family picnics, and other outings where food is the main attraction. I know that if I eat certain foods, that more than likely I’m going to vomit. Many times, people want to know why I am not eating. I explain gastroparesis in as simple terms as possible and with as little detail as possible. While people are eating isn’t the best time to explain that I vomit nonstop when I eat the wrong foods or wrong amounts. While they are eating isn’t the best time for me to eat and vomit either. That makes for an award situation. However, some people persist and want to know more. So, I’ve grown tired of making the situation seem less complicated than it is. For a long time I blew my gastroparesis off as no bog deal, even though I knew it was. Now, when people persist, I give the details. They don’t usually ask twice. ūüėÄ So, I explain it’s not that I don’t want to eat. When I eat fatty foods, fresh fruits and vegetables, meats, and food high in fiber, I vomit. Then I usually get a look of pity, which I completely despise, and am asked, “So what do you eat?” I found this picture on Pinterest today and while it may be referring to a gluten-free diet, I feel it portrays my gastroparesis diet perfectly. I don’t know from one day to the next what I can eat. A food that may be safe today may make me sick tomorrow. That is how my life works and I’ve adapted. I carry a roll of trash bags at all times because I never know what the day is going to hold.

#Hashimoto's #Autoimmune_Disease ‚ÄĒ Living Naturally Autoimmune

This next sign really made me smile. I was diagnosed with complex regional pain syndrome when I was fifteen years old.¬† I started having issues with gastroparesis in my early twenties, but wasn’t diagnosed until I was in my thirties. Many times, I’ve been told I’m too young to have the problems I’m having. For those who have told me that… this sign is for you. Unfortunately chronic illness does not discriminate based on age.

At 41 the doctor said you have the neck of a 70 year old! True story. Chronic pain doesn't end. I'm 55 and still disabled.
For those of you out there that are also facing chronic illness this one’s for you. While many people don’t understand what we are going through, we have to stick together and
hang in there. On bad days we need to reach out to each other and help each other along. On good days, we need to educate the world and bring awareness to invisible, rare, and chronic illnesses.
Chronic Illness - ones that aren't known by everyone or at all.

 

Posted in Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy, Courage, Gastroparesis, Inspiration, Life Lessons, Rare Diseases, Strength

Broken

Yes but no one whats a broken crayon

I saw this quote on Pinterest a few days ago and as a person living with a rare and several chronic illnesses, it made me stop and think about life.

When you buy a box of crayons, you expect unbroken crayons with those perfect little crayon points. You don’t expect a box full of pieces of crayons. As a matter of fact, most people throw away broken crayons. I hadn’t really thought about it until I saw the quote, but broken crayons do still color, so why do they get thrown away?

Living with multiple chronic illnesses, I can relate to the broken crayon that still colors. Due to illnesses beyond my control, my body is “broken.” I have pain and weakness in my legs and feet and am unable to walk. My stomach doesn’t empty, which makes eating difficult. It also adds to my weakness and causes me to be tired. Sometimes, I feel like people treat me like the broken crayon. Maybe I’ve got it all wrong, but it seems to me as though I get left out of things and I’m sure it’s because people¬†think I’m “not able” or “don’t feel like it.” Maybe they are afraid to ask out of fear of hurting me.

Sometimes I feel like I, like the crayon, have been thrown out because I’m broken. However, like the crayon is still able to color, I still have purpose and am useful. I may not be able to run marathons or win pie eating contests, but there are lots of things I can do and am good at. My ears work fine and I’m a good listener. While I may be physically weak, I’m spiritually strong and am willing to be a shoulder for others to lean on. I may spend most of my days in bed because I simply do not have¬†enough energy to get up, but I can talk on the phone and¬†send emails. I can also¬†inspire others going though similar situations by blogging about my experiences. When my carpal tunnel and neck pain cooperate, I can knit, paint, and do crafts. I may not currently be physically capable of working, but I still have purpose.

Being disabled doesn’t make me useless, it¬†just points¬†my life in a different direction and gives me a¬†new purpose.¬† Small chunks of broken crayon are often disposed of because they are difficult to color with. However, I¬†have¬†melted broken crayons before¬†and used cardboard and plastic molds to form them into new crayons. Instead of putting them in the trash, I made new, often¬†larger, multi-colored crayons. Just like crayons broken into little pieces¬†can¬†make coloring a little more difficult, CRPS and gastroparesis have made my¬†life more difficult. Many of the activities I did before CRPS (hiking, playing volleyball, etc.) are no longer possible. With gastroparesis, I can no longer eat many of the foods I once enjoyed. Just like I took the broken pieces of crayons, melted them. and molded them onto new crayons with new purpose, I’ve had to take my broken life and put the pieces together in a new way to find purpose. I’ve had to find ways to adapt. I’ve learned new things, found new hobbies, and adapted to my new life. I miss my old life before CRPS and gastroparesis, when things seemed easier and life seemed less complicated, but I’ve come to accept my new life and continually look for things I can do to make life better, both for me and others.

If you are struggling with a new medical diagnosis or changing abilities because your chronic illness is getting progressively worse, I encourage you to keep fighting. Don’t give up. As chronic illness warriors, we must stand tall and stick together. Talk to others fighting the same fight. There’s strength in numbers. You may feel broken, but know that¬†broken crayons still color. No matter how broken your life may seem, you are very¬†important. You are loved. Your life still has purpose.

 

Here are a few more broken quotes I came across that I liked..

King David committed adultery & murder - he sinned big, but repented bigger - he is a model of what real repentance looks like - he wrote Psalm 51 as an agonized cry to God for forgiveness - God not only forgave him but called David "a man after His own heart" Like & Repin thx. Follow Noelito Flow instagram http://www.instagram.com/noelitoflow

Beautifully Broken Quotes | Broken clouds pour rain, Broken soil sets as fields, Broken crop yield ...