Silent Survivor

I am a 40 something year old female and have lived almost half of my life expectancy. Let me tell you, it has been a struggle. A struggle I am determined to beat because I deserve to live a better life. I suffer from Fibromyalgia, Connective Tissue Disease, Chronic Migraines, Anxiety, and most recently bulging disc in my back that have caused me to suffer from chronic leg pain.

Being me, and going through temporary and life long ailments has caused me to miss out on many things in life and love. My hope is this blog will help women suffering from hidden ailments, damaged relationships, and alienation from life by giving them hope or at the very least know they are not alone and to fight with everything they have left! 

The products I have chosen to feature on my website all relate to women, wellness and beauty. Just because we suffer, some of us silently does not mean the sass and glamour has to be missing from our lives. Together we can show the world, we are warriors, we are women, and we are worthy!

Love & Life

Just my thoughts…

We had a very somber weekend… we see daily how quickly life can turn the world upside down with tragedy and death. There have been people leaving this world all around me since the new year began. Unfortunately, death is a part of life and we are never ready for death even though we know death is eventually expected.

It amazes me to see all of the post on social media reminding us to “live now and love hard“ in the sporadic moments of death. “Tell the people you love that you love them because tomorrow is never promised.” We know this already and it should not take losing someone we love or admire for this to happen. We take life for granted, we hold grudges, we walk around with a “better than thou” disposition, we slander people, we withdraw affection, we care more about the things we don’t have instead of cherishing the things and people we do have.

Be bold! Do that thing that takes you out of your comfort zone, love that person that makes your spirit dance and your stomach flutter, show the world that love and life has the power to overcome all things, even in the absence of life. Insert the power of love and life into the world. Love and life are infectious and will run rampant in your absence. Practice love and live your life.

“We live life everyday, but we die only once.” – unknown

Take care y’all! 🖤

#maisondesass #SASS #wellnessblogger #wellnessinfluencer #bedope #dope #queen #unapologeticallyme #unapologetic #dopevibes #positivevibes #positivity #besavage #besavagenotaverage #motivation #missmewiththebullshit

Follow me! I’ll follow back!

ReneeDanielle #www.maisondesass.wordpress.com

@ReneeLloyd00 (Twitter)
https://www.facebook.com/rlloyd72

Family, Friends, Love…

It has been a little over two years now that I have been struggling with chronic back pain, along with everything else I deal with on a daily basis. (The back pain was new to the game.) Of those two years I spent about 18 months in bed depending on every one and any one that was willing and able to help me. I needed food, I needed help bathing, I needed my house cleaned, clothes washed, hair washed. I even had to get help putting on my clothes and chauffeured to every doctors appointment I had. The only thing I didn’t need at the time was money… so what?

It was during this time I really came to understand the meaning of these three words… friendship, family, and love. Believe me when I tell you this… not all people that say I love you really love you. Not all people that call themselves family are true family, and most friendships are nothing but acquaintances or associations. During this time I learned a lot about myself and others. I now know your friends are family and family is love. There were people I thought that genuinely cared about my well-being and never showed their face or offered to help out in the smallest of capacity. Then there were folks I never would have imagined would help that were there. I was shocked!

Grant it, I know no one owes me anything! However one would be led to believe that friends, family, and loved ones will be there when you need them. Well that train of thought is a tragic lie. I guard myself now, it is a must. I do not allow just anyone into my personal space because I need to continue my recovery from my surgeries and continue to regain strength. Plus I need to manage my other chronic illnesses and getting involved with negative, narcissistic folks who have fake feelings, fake caring, and negative nasty energy does not help heal the body.

My surgeon asked me several questions about things I thought had nothing to do with my back problem. Before he would do my surgery I was told to remove stress, negativity, and anxiety from my environment. I did just that. The affect stress, anxiety, and negativity have on the body will keep the body from healing, causing more harm than good. During the time before surgery, after surgery, and even now, there are certain people who are not allowed in my home inclusive of blood “family”, and so called “friends”. I’ve learned to say no without feeling guilty to most people, however this is still a work in progress, but believe you me the list of people that have the privilege of entering my space are very special to me. Those individuals fed me, changed bandages, bathed me, helped me to walk, kept me company, visited me in the hospital, took me to numerous doctors appointments, picked up medications weekly, and did odds and ends for me, I appreciate them and will never be able to thank them enough! These individuals will always have my heart.

Then there are those who can kick rocks with no socks and shoes on while trying to figure out and understand the meaning and concept of friendship, family, and love. Stop throwing around these words. These words are sacred and worthy of only a few. In a cryptic way, this surgery and my chronic illnesses act as life lessons for me. Everyday I receive clarity about things happening in my life that were once mysterious to me. Blessings come in all forms and sizes. This blessing saved my life, saved my sanity, and is rebuilding my heart and outlook on life. There is no way I would have made this progress without my friends, family, and love.

Friends, family, love…

Don’t Touch Me!

Fibromyalgia comes with a form of pain unlike any other type of pain. The pain is very hard to describe and therefore very hard to explain to others that do not suffer from fibromyalgia. Fibromyalgia is nerve pain that can be felt almost all over the body. Many people have no understanding of the level of pain an individual with fibromyalgia endures while experiencing a flare. We may appear healthy on the outside, but to your surprise we are not.

There are times when I am physically untouchable. No really, don’t touch me! The surface of my skin is in so much pain that it hurts to rub lotion on, put on a pair of pants or a long sleeve shirt. Well this phenomena has a name, Allodynia. Allodynia is a rare condition causing pain, or an over-exaggerated pain, affecting the skin. There are three different types of Allodynia, which I will not go into because I am not a doctor. What I will do is share with you how this possible symptom of fibromyalgia affects me.

Tactile Allodynia is pain caused by someone simply touching me as an act of kindness. This is inclusive of clothing covering the skin, a hug, or the clothing I wear on a daily basis. This particular pain is a reaction to stimuli, or should I say an overreaction also known as hypersensitivity. Tactile Allodynia is associated with chronic fatigue, migraines, irritable bowel syndrome, and tempromandibular joint disorder to name a few. Then on the mental health side of things, depression, bipolar disorder, post traumatic stress, anxiety, and panic attacks to name a few are also associated with this phenomena called Allodynia.

There are times when I am touched by another person and I actually scream out in pain. The first reaction of the person that touched me is, “that didn’t hurt, I barely touched you.” My counter reaction is, “how are you going to tell me that didn’t hurt, this is my body.” This exchange happens all of the time because people that do not suffer from this condition simply do not understand, and to add insult to injury they decide to call you weak, dramatic, or soft among other things.

Please understand for those of you “non-suffers” reading this blog… People suffering from this particular phenomena are far from weak, soft, or dramatic. Spend a day in my body and lets see how well you do. After a couple of hours or maybe even a few minutes, you will definitely want your healthy body back. You will probably even think before speaking the next time someone brings to your attention they are in pain.

This pain is real! It is not a cry for attention. It is not me being dramatic. It is a part of my individual chronic illnesses for which there is no cure. I have said this before and I will continue to say it until hopefully at least one person in the lives of the ones suffering understand… We simply want you to understand what we are living with. We know our loved ones can not fix or cure this horrible problem, but understanding us is half of the battle.

OMG – My Back!

True story.

One night I remember shooting pool and a faint pain began to develop in my lower back. I noticed that with each shot I took the pain increased. I took a time out, I was in league play, and informed my teammates of what was happening. Their solution to the problem was tequila shots, after all Tequila cures everything (eye roll). I wanted to win my match not become intoxicated and miss the cue ball and the object ball! I managed to make my way through the next two matches and won the points for my team.

After shaking hands with my opponent I proceeded to tell my teammates I would be leaving because I was having terrible pain in my back. After the 25 minute ride home I had difficulty getting out of my car. I drive a sports car that sits low to the ground, once I parked the car, I had no strength in my left leg to get out of the car, and relentless pain in my back. This was the beginning of what I recently found out would be a life-time struggle. Something I will have to “live with” for the remainder of my life. On that night in August of 2017, my life changed forever.

My threshold for pain is very high. I was told by my doctors the level of pain I am capable of tolerating without medication is beyond what the average person would be able to handle. With that being said, my back pain and associated leg pain was very difficult to treat. My first appointment for treatment was a visit to a spine and pain specialist. Based on my MRI results, I had two bulging discs, one of them leaking fluid and inflammation in my lower back at L4, L5, & S1. I was immediately scheduled for a set of three spinal injections consisting of two shots each visit, administered via X-ray, by an anesthesiologist over the following six weeks.

With all of my injections completed, my pain had not resolved and began to get worse. The next stop on my treatment plan was a chiropractor. My chiropractor was awesome! He made a few adjustments, massage therapy, and other techniques and I thought he had performed a miracle. The miracle only lasted about 30 minutes each time. Trust me when I say that a mere 30 minutes of having no pain was worth the visit each time, it was worth it. However, the treatment process lasted longer than my relief.

Eventually, I decided to visit with an Orthopedic surgeon. He viewed my MRI results and recommended a laminectomy. Two laminectomies later, about six months apart I was in the worst pain I had ever been in. I went back to the surgeon and he order a spinal block via X-ray. The pain that came with that injection was horrific! I vowed it would NEVER happen again, and besides it did not work.

Five months later my pain was at its worst. I spent countless hours in tears and I was taking high doses of Gabapentin (nerve medication), Vicodin (pain medication), and a combination of Cyclobenzaprine and Methocarbamol (muscle relaxers). I went back to my surgeon to discuss the next step, spinal fusion. My doctor told me to go home and think about the spinal fusion surgery and I politely told hie there was nothing to think about. Let’s do the surgery.

In early fall of last year, I had spinal fusion surgery on my L5-S1. My disc was removed , an artificial disc placed, along with a rod, and brackets to hold everything in place. Here I am 8 months later and still in pain. I recently visited my surgeon this week who was so caught up with other patients so my appointment was scheduled with his surgical assistant. After explaining to her I was randomly falling because of the pain in my back and leg were oftentimes unbearable, she stepped out of the room to consult with my surgeon to discuss if a CT-Scan or MRI would be best to determine if the nerves in my back were once again the cause of my pain.

When she came back into my room she informed me my surgeon suggested an MRI. The surgical assistant also told me I needed to suck it up because I was going to have to learn to live in pain for the remainder of my life. Bitch…! The surgical assistants bedside manner almost got her kicked in her face. As far as my surgeon he chose to not acknowledge me and he was standing less than 10 feet away. At this point in my life I have an extremely low tolerance for bullshit and made the decision to walk out of the doctors office before I was arrested. My mother was with me at my visit, as she has attended my appointments faithfully, and felt the exact same way. I wanted to toss that entire medical practice. I was enraged!

I am seeking a second opinion and I am currently searching for an orthopedic surgeon to lay a fresh set of eyes on my case. It is important to take charge of your own healthcare. Get second and third opinions if you must. I live in pain everyday from many different ailments. My back slows me down and keeps me from doing many of the things I love about and in life. I am working to learn how to live with pain and not live in pain. I will continue to find ways to deal with my pain through exercise, meditation, psychology, etc…

Whatever it takes.

To Live in Pain Everyday

People who do not suffer from chronic disease or chronic pain have a difficult time relating to or understanding someone who does. For the non sufferers, think back to the last time you had pain. Was it a headache, back ache, or a stomach ache? Did your feet hurt? Did you aggravate an old sports injury? Now imagine having that one specific pain everyday, what does it feel like? Is it something you believe you could live with comfortably everyday? Probably not.

I live in chronic pain every single day of my life. I have upper and lower back pain, pelvic pain, knee, foot, elbow, wrist, and finger pain. I have pain when I stand up, lay down, walking, and sitting. I have chronic pain. It never lets up, and it never gives me a break. Now let’s throw in the random migraines, irritable bowel, allergic reactions to the unknown, and my fluctuating vision. Whatever I have not mentioned feels great!

Everyday people manage to ask me how I am doing. My response is either okay, good, or not bad. I know the people I talk to get tired of hearing about my aches and pains so in most instances I don’t mention pain and they are lead to believe I am well. I hide pain very well, it is a skill you acquire after being in pain for so long. You get used to putting on a happy face when you are pain, it becomes your norm. After all in most cases you don’t look sick anyway.

In my general conversations throughout the day, pain or some ailment always manages to make its way into conversations with the people closest to me. It is definitely not intentional, but they do ask. I minimize my pain when speaking to family and friends as much as I can because I am not so sure they believe that any one person can experience and survive that much pain. It sounds extremely fictional and damn near impossible.

I have an extremely high pain tolerance so pain medications do not help my pain other than causing me to sleep. My doctors have explained to me that because my tolerance for pain is high it is very difficult to prescribe medications for me because my dosages would be extremely high. So basically my body does not register pain until its too high to control. The level of pain I am able to tolerate a “normal” person would probably not function well, at all.

I know how to put on a good face and look good when necessary. I know how to make my way through the pain until I can find time and space to be alone. I spend a lot of time alone and for good reason. I simply do not want to be around people while I am in pain. Someone I thought I was very close to and had a future with, told me I physically and mentally drained him because I was always in pain. What in the entire hell? I am the one drained, physically, mentally, and emotionally because I am the one living in pain! Needless to say that person is no longer in my life…

I know now not to seek refuge in people, but in myself. I am beginning to practice meditation and I try to do as much as I can until I can not do any more. I have no issues with the perception others have of me, and I am damn good at saying no! There are many times the shower is my refuge. I can cry and my tears wont be noticed or mocked. I am not weak because I cry and I do not cry because of self pity. I cry because I hurt and pain is a constant part of my life. Plain and simple.

The Migraine Experience

Migraines, I believe originate from the very pit of hell. For the folks reading this that have already drawn the conclusion that I am exaggerating and so are the many people who suffer from migraines, I will give a scientific explanation first. Then I will free flow and give my description, something a little more relatable, to paint a clearer picture of a migraine for you.

Migraine headaches are mainly classified in two ways, chronic or episodic. Chronic migraines occur approximately 15 times or more a month, whereas episodic migraines occur four to 14 days a month. Migraine is a headache that may be accompanied by nausea, vomiting, light sensitivity, and possible sensitivity to noise and smell. This type of headache and symptoms can last anywhere from four to 72 hours with additional symptoms long after the headache has stopped.

Ok, now that I have gotten the scientific knowledge out there, let me give you a personal description of what a migraine feels like and what it does to me. However, let me say this, everyone that suffers from migraines may not suffer the way I suffer. Migraines are specific to the individual and each persons triggers, symptoms, and tolerance are their own.

I experienced my first migraine in the seventh grade. I remember it like it was yesterday. I was sitting in Biology class preparing to dissect my frog, which I was very much looking forward too. I remember my vision becoming dark. Almost like someone turned the dimmer switch down on the lights. Then I began to experience tunnel vision. I could visibly see multiple rings in my line of vision, my peripheral vision was completely gone, and then complete blindness. I began to feel nauseous and began to vomit.

The pain was on one side of my head and it was awful! The pain felt like someone was attempting to split my skull open with a pickaxe. Let’s not forget to mention vomiting with such a force that it reminds me of The Exorcist. Then there are other little things like extreme sensitivity to smell, light, and noise. The only thing that gives me any relief, is being left completely alone, in the dark, quiet, and cold.

I remember one migraine, I had to drive to pick up a family member from the train station. The pain was so intense I had to lay down on the kitchen floor which was ceramic tile and very cool to the touch. After resting on the floor for a few minutes I grabbed about two, one gallon zip-lock bags. I remember filling up those bags with vomit on the way home and was told I tried to jump out of the car while it was moving. I guess that was because of delirium. Thank goodness someone else was driving the car at that moment…

My migraines sometimes try to be sneaky and present themselves as various other types of headaches such as a tension or sinus headache. The truth is the majority of my headaches end up being migraines. My migraines last anywhere from a few hours to two or three days and often end with a trip to the emergency room for injections. The latter days of my migraine cycle act as a migraine hangover or the remnants of the migraine.

No matter how many or how few migraines a person experiences, one thing is for sure… everyone’s experience is their own. Everyones pain is their own. It’s up to the individual to be mindful of their triggers and avoid them at all cost. Migraine sufferer’s are survivors.