Dominate your chronic life
There are so many little things that either improve or make living as normally as possible despite having a chronic illness.
With California’s recent straw law, I’ve discovered how important plastic straws are to my own chronic life.
This post is not an environmental or political debate. Instead its purpose is to showcase why some people need plastic straws and to share some options for those who live in or plan to visit California.
Does the thought of taking a summer vacation get you excited or does it send chills down your spine? I loved traveling before I became chronically ill. In addition to yearly Disneyland vacations, I loved exploring new areas in other states or within the ones that I lived in. Weekend road trips without a destination were my favorites.
Soon after chronic pain became a part of my daily life I began to loathe traveling. It wasn’t that I didn’t want to go exploring, instead it became too painful. Not only did my excursions increase my pain while away, it would take weeks and sometimes months to recover from them once I returned home. Not wanting to spend most of my time recovering I opted to stop traveling.
Living with one or multiple chronic illnesses involves a LOT of waiting. We wait for doctor appointments, test results, pain relief, cures, diagnoses, people to understand, and so much more…. But does it ever end? There is no simple answer for this question.
My chronic illnesses which include but are not limited to, fibromyalgia, psoriatic arthritis, psoriasis, degenerative disc disease, abdominal adhesions (from endometriosis and surgical scarring), and coccydynia, have all forced waiting periods into my life when I would have rather not been sitting around waiting. The problem with all the waiting that has to be done is that waiting then becomes a way of life. However, as I discovered after the first 12 years after my first diagnosis, there are some things that we shouldn’t be waiting for, like living.
*Disclosure: This post includes affiliate links. Meaning that at no additional cost to you, I receive a commission when you make a purchase through my links. The proceeds earned fund the giveaways I host in my Facebook groups.
My early chronic years were spent waiting for answers, test results, and most of all pain relief. Even though I heard my doctor say “There isn’t a cure, but we can treat the symptoms”, I wasn’t able to accept that I would never be 100% pain free. I kept waiting for that unattainable dream of waking up without pain and being able to do whatever I wanted.
Although I had no choice but to wait for test results, to recover from surgeries, and for treatments to begin to working, my life was meant to be lived. Waiting to live caused me to miss out on a lot. I missed out on many opportunities to grow as an individual, to spend with others, to make memories with my family, and so much more.
In my eBook Make Pain Your Bitch: How to Dominate Your Chronic Life, I share how to live a good life despite your chronic illnesses. My life didn’t change overnight, it took time, patience, and hard work to create a life that I am passionate about. Nor did I wait until my pain level became manageable, no I began carving out my new life while flat on my ass in one of the darkest periods of my chronic life.
Chronic pain or any new twists or turns that my chronic illnesses want to take will never hold me back again. Why? Because I won’t let them. If my body won’t let me do things one way, I will find another. If I have learned one thing throughout 20 years of living with my chronic illnesses it is that life should never be put on hold, no matter what I am waiting for.
I vividly remember the day in 2013 when I realized that I had been waiting to live. That I had done nothing with my life since my symptoms began disrupting it. That, when you think about it, I had lost over a decade of my life. The heartbreaking part was that I was also raising children who were watching me wait. Existing was the last thing I wanted my kids to do.
When I realized that I had been waiting to live, I had to ask myself why I did it. The answer came easily, I was waiting to be healed, even though I knew that would never happen. Why did I wait so long for something I knew would never occur? Because, being healed would make what I wanted to do so much easier……. Friends, that hit me like a ton of bricks….. I wanted life to be easy.
Life isn’t easy for anyone, even those who aren’t chronically ill have their challenges. Reaching my goals would never be easy or pain free, but instead they would require a lot of hard work and sacrifice.
Take a chance, don’t let the unknown diagnosis or unexpected flare stop you from creating a life that is filled with passion and purpose.
I will be the first to confess that it is extremely difficult to think about the future while waiting on a medical test result or diagnosis. If you are like me, your mind goes to all the worst case scenarios and not one of them includes a future you can bare to think about. But we can’t allow the unknown to control our destiny.
Instead of continuing to allow my life to abruptly come to a halt, I began looking at alternative ways to make my dreams come true. If a particular diagnosis is going to dictate that I can’t do something the way I have, I begin looking for other ways to continue what I am doing. For example, working from bed doesn’t mean that I am working less than if I traveled to an office every day. Nor does using a mobility aid make spending the day at Disneyland any less special than when I am on foot.
Currently, I am experiencing a flare up from abdominal adhesions. Thankfully, my pain management plan is keeping pain from my other chronic illnesses under control, because combined my pain level would be off the charts. However, the abdominal pain I am experiencing is forcing me to do things a little differently. Here is how I continue to live while waiting for relief…..
What are you currently waiting for? Why and what can you do in the meantime?
I may have been born in the late 60’s, but I am a child of the 70’s!
One of my favorite television shows of the seventies was Charlie’s Angels. Not only did I never miss an episode, the following day I would make my friends act them out with me! For those of you who are not familiar with this show, Charlie had a private detective agency and he hired three sexy women that he called angels. The original angels were Farrah Fawcett as Jill Munroe, Kate Jackson as Sabrina Duncan, and Jaclyn Smith as Kelly Garrett. They were badass women kicking butt and uncovering mysteries.
I wanted to be an Angel, Jill in particular because, well, hello that hair!!!!!
Little did I know that a show about beautiful, strong, and intelligent women would also give me the “know how” I would need to surviving life with not just one, but multiple chronic illnesses!
*Disclosure: This post includes affiliate links. Meaning that at no additional cost to you, I receive a commission when you make a purchase through my links. The proceeds earned fund the giveaways I host in my Facebook groups.
When I was diagnosed with fibromyalgia, psoriatic arthritis, psoriasis, degenerative disc disease, coccydynia, and endometriosis, I had no clue that each chronic illness would lead to a life of searching….
Searching for what you ask? What not would be easier to answer, but whether you have one chronic illness or a slew of them, the life of the chronically ill is spent searching for ways to relieve pain, new symptoms, reoccurrence of old symptoms, side-effects, and treatments. The chronically ill spend a lot of time investigating their bodies, the fluids that come out of them, their mental status, abilities and disabilities.
Thankfully Charlie’s Angels taught me to never give up and that there is always an explanation. My doctors may have given up, but I will never give up searching for the source of my chronic illnesses.
Like any good detective, I have learned to trust my instincts. I received my first chronic illness diagnosis in 2001 and since then I have had countless tests come back and show nothing wrong when I went in with a complaint of pain. Thanks to my Angel training I knew not to accept that answer and kept pushing the issue and presenting new clues to my doctors. In several cases, tests showed absolutely nothing wrong with me, but surgeries revealed the truth. The findings of each surgery proved and validated my complaints by being something that no test could have ever revealed.
Trusting my instincts has saved my life countless times and will until I am no longer able to speak for myself. I can never stress enough how important it is to be your own advocate!
Like a well trained private eye, I know how to protect myself. While I may not be punching or handcuffing my enemies, I have to fight to receive the care I deserve and need. I have learned when fighting a doctor about a diagnosis or test is worth my time or not. Sometimes my energy is better spent finding a new physician.
I have also learned to listen to my body. It will let me know if the situation is urgent or if it can wait a little longer. This instinct also helps me get through life. I have learned what levels of pain and exhaustion can be pushed through and what cannot.
Living alone, void of any assistance from others when you have a chronic illness is possible, but it’s not realistic. Whether you are married or not, it is best to have a team.
First you need a medical team that is working together and not against each other. They and you, need to be on the same page about treatment of the disease and pain.
Then you need your personal team. You need someone that you can confide in, because trust me there are going to be days when you just need to vent your fears without terrifying your spouse/partner. My husband is a fantastic team member that I don’t ever want to be without. He has witnessed the horrific treatment from surgeons and has been there for me at the absolute worst moments of my illnesses. Other teammates that are beneficial are folks to help with transportation, provide an occasional meal, or to tidy up your home when you are at your worst. No matter what, you need someone in your life to make you laugh, because without laughter we are only left with sorrow.
Be sure to train one or more of your team to be your patient advocate. You may not always be alert enough to express your requests or needs. Having someone who can speak for you when you are unable is invaluable!!!
Thanks to the skills I learned from Charlie’s Angels, I continue to fight pain, solve symptom mysteries, and refuse to give up!
Tears: I hold them back, until pain pushes them out
Spring Clean Your Chronic Life
Mobility Aids: Everybody uses them
What I have learned from using PEMF daily for two years!
*Disclosure: This post includes affiliate links. Meaning that at no additional cost to you, I receive a commission when you make a purchase through my links. The proceeds earned fund the giveaways I host in my Facebook groups.
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If you see me crying, know that you are witnessing pain that I hope you never have to feel.
Whether it is one single tear rolling down my cheek or many pouring out of my eyes, they still represent the kind of pain you secretly wish upon the most wickedest of people.
Living with chronic pain from illnesses such as fibromyalgia, psoriatic arthritis, endometriosis, abdominal adhesions, degenerative disc disease, and coccydynia forced me to change my life. Like most other chronically ill people, I had to say good-bye to my old life. We literally bury our old lives. We don’t move on, instead we start anew, which is terrifying in a body that is riddled with diseases we know nothing about.
*Disclosure: This post includes affiliate links. Meaning that at no additional cost to you, I receive a commission when you make a purchase through my links. The proceeds earned fund the giveaways I host in my Facebook groups.
It doesn’t matter what type of disease a person has, it could be an autoimmune, neurological, or parasitic disease and each person will fear what the future holds for them. How long until they can’t walk? How fast will their disease progress? What if a cure is never found? Will I ever find pain relief? How can I afford to live? Who will take care of me?
With every chronic illness comes frustration. We are frustrated by many things such as but not limited to: not being able to do what we could before becoming sick, having our friends, family, and even doctors doubt our pain and illness, over the cost of care and medications that rarely help, from trying to be stronger than you are……
Even with the best pain management plan, chronic pain is always there. Even when I managed to bring my daily pain level down to 0-3, I was devastated by the pain I experienced from my car accident last year and later the fall I took while on my morning walk. When I fell, the pain pushed the tears out of my eyes. I had no idea I was even crying until my daughter noticed. People who have lived in pain as long as I have don’t cry for no reason. Nor do we cry over minor pain. So if someone who has lived with pain for 20 years starts crying because of a pain, it is serious.
Because I live with multiple chronic illnesses, I was shocked to be able to reduce the pain from all of them for as long as I did. Unfortunately, the damage that I have sustained in my abdomen (problems with endometriosis and adhesions began in 2003) are continually presenting themselves and the worst part is there is nothing I can do to stop it. Whenever I think I have calmed the storm that is taking place inside my belly, it comes back and laughs in my face. I am trying to be strong, I am trying to not allow it to disrupt my life, I am trying to hide from my family just how bad it is, but I am failing…… the tears that I keep whisking away give it all away……..
I am not going to tell you to hold back your tears. Nor am I going to tell you to spend the rest of your life crying. What I am going to tell you is this: Trust your instincts! Fight for your body! Don’t give up and try everything. Thankfully I do have a great pain management plan that is keeping all my other chronic illnesses happy at the moment. I honestly do not believe that I could go on if they were all flaring at the moment. Find what works for you, even if it means doing what I did which was trying things that aren’t considered the norm in our healthcare system.
Never be ashamed of your tears. They talk when your mouth can’t bring forth the words you need to say.
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