Loneliness SUCKS!!! (Battling a Chronic Illness)

(This is an experience that I thought I share that happened to me last night.) 12/9/2019

Depression is very scary and the most important thing to do, if you feel that this is you, is to seek professional help immediately.

Here, as I do everyday, alone. Sometimes I feel like I’m wasting away with no where to go and no one to share my true feelings with. It’s true that I live in the house with three other family members who I rely for everything. But even though this is true, everyone has their own agendas, their own lives to live. You see there are only a select group of Snowflakes, Spoonies and Warrior’s who understand exactly what we go through each and everyday and night of our lives. And believe you me, it is impossible to make others understand. This goes for immediate and extended family, friends, coworkers as well as the medical community.

My husband works three jobs to keep a roof over our heads and medical insurance to cover my medical care. It’s hard on me to watch him work so hard. He states, “I do it because I love you.” We’ve been together for 33 years and married for 31. Through our love we have three amazingly talented children: one son, two daughters and one beautiful daughter-in-law. I married very well, but it still hurts to see hime work so hard with very little sleep.

For twenty years I have been battling these debilitating diseases and I never once stated or felt that I was depressed. Lately though these feelings have began to surface. With my ability to function and the ability for my physician’s to treat me decreasing at a fast rate; I don’t know or understand how anyone could not feel this way.

I have tried to use my time wisely during the days by delving into studying biblical hebrew and loving my animals, Most of the time that’s not possible because I am so tired or in too much pain. I feel guilty toward The Most High that I let these emotions in. It feels like I am not placing my faith in him or myself for that matter. All those that know me, know that I have always keep my spirits up and prayed up so that I can help myself and help others who need an ear or a shoulder to cry on. Those that suffer with these invisible illnesses that are incurable, having very little research done to find a cure (because there is very little federal funding or help initiated towards it), as well as doctor’s and their medical communities who have little knowledge about them or even the correct way to treat them.

Much of last night I spent trying to remove those emotions from my system. You see, after going to a doctors visit and being told that another major flare up might be occurring or is active at the present, is overwhelming. This means a new regiment of testing and two infusions are in the works. I end up vented to my family and said some things that should have been left unsaid. My emotions were huge and on overdrive. My husband said that, “It was my medications caused my outburst.” My children stated that my reactions and my statements were crazy or wrong. Words were spoken towards me saying, “I never listened to them when I was trying to get my feelings out correctly.” I tried to get them to understand but nothing would come out right. I truly felt very crazy like I was losing my mind.

I wanted to actually stop being, but Yah stepped in and removed those thoughts and emotions from my spirit. I thank Yah for being omnipotent and gracious with me and granting me with an understanding family.

I let myself down last night because depression is not me. I have never let the Devil in my life because I trust the Most High to much. Always have.

I’ve had the best childhood growing up. Coming from a large family with nine siblings (2 brothers died young); 6 girls and 1 brother. I am next to the baby girl, a.k.a. #5 daughter. LOL 😁 Now my parents, grandparents, in-laws and some of my older siblings are all gone now and that is one of the causes for my loneliness. The youngest remain. The only son and the two youngest girls. Wanting to call them, talk to them, hug them and gain more wisdom from them are what I face all the time. My father instilled in me the moral law and the love of Yahuah and I will always treasure that.

I lost a huge part of my life in fighting these illnesses (Sarcoidosis, Fibromyalgia, Dystonia, Rheumatoid Arthritis, etc.) and the lost of my family. But the loneliness never equated depression. Knowing that death is just one part of life.

All in all, I will continue to fight because I have a lot of fightleft in me. But the overall reason for this post is to inform anyone that is in my position; you are not alone. If at anytime you feel like all hope is lost, reach out and talk to someone, meditate or pray, but mostly reach out and talk to someone.

Peace and blessings to you always and forevermore.

I am,

Marilyn

An Inspire.com Post that I had to share… “STAND UP FOR SARCOIDOSIS AWARENESS: PURPLE POWER” by MZBIGGREDD

Stand Up For Sarcoidosis Awareness

We have two options, medically and emotionally: give up, or fight like hell. Unite for one, unite for all. After a Sarcoidosis diagnosis — whether it’s your own or that of a loved one — the right information can be one of your most powerful weapons. Sarcoidosis is often misunderstood, there are many misconceptions about this disease. But education is the best defense. Finding a cure is our goal, spreading awareness plays a role. A brighter future for all we all secure, if everyday we keep seeking a cure. As long as we have HOPE and each other to help us cope, we all can be better together.

Sarcoidosis didn’t stop me from being me, it helped me find who I am and what I want to do with my life. Time is shortening. But every day that I challenge this Sarcoidosis and all of it’s unwelcoming friends and I survive, is a victory for me. A person has 1000 wishes. A Sarcoidosis patient has one, “To Get BETTER.” Once you choose HOPE, anything’s possible. People will never truly understand what it is to fight like hell to win a battle. Not until they are faced with the words, you have Sarcoidosis.

Thousands of individuals are diagnosed with Sarcoidosis. Even those who aren’t stricken with the heart of the illness are touched in some way by the deadly disease. Sarcoidosis is something that will show how strong or weak a family, relationships and friendships really are.

“Dear Sarcoidosis, we as Warrior’s are stronger than you. You may be winning the battle but we are determined to win the war. For many Sarcoidosis comes with a lifelong battle, just like life. It comes with battle against a life threatening disease, when life is a continuous battle against the restrictions set by fear and hopelessness. It comes with life altering conditions that may shatter your world to the core. But while Sarcoidosis is a word, it is not a sentence “

Next time you feel yourself getting annoyed about your bad hair and nail day, bad traffic, shitty bosses, and screaming kids, just remember there’s somebody going through a flare-up, indescribable pain, weight gain, hair loss, loss of breath, severe depression who would welcome and gladly trade places with you. Pain is nothing new to many Sarcoidosis patients. Of all life-altering disease, Sarcoidosis is one of those which subjects patients not only to a wide range of painful and exhausting symptoms but also to a wide range of emotions.

Sometimes in our lives we reach rock bottom. We experience what we call HELL. For each of us it’s dressed up differently, but for all of us it is dark, tough and devastating. This HELL can be our awakening. Some people call it a breakdown; I believe it is a breakthrough. Being diagnosed with Sarcoidosis comes with a lot of uncertainties. It comes with a baggage that is bound to test your very character. Sarcoidosis is not the end of your life; it actually marks a new beginning. You should not let this disease rule over your life. It has to be fought, not feared. It can be handled and it can be battled with. Many people have done it, many people have survived it, and so can you. The main message Sarcoidosis patients is to convince you that You Are NOT Alone in this fight.

Sarcoidosis has threatened many lives. But must it remain a threat? Succumbing to this threat will only make you a slave of fear, fear for your life. The thing is that you can fight Sarcoidosis, no matter what form it shows up in. People have done it and do it every day. It may be a very serious disease but on the other side, spending your life with this disease allows you to realize how fragile and precious life can be.

So please keep in mind that Sarcoidosis is not a joke, so don’t treat it like it’s one. Fighting today for the chance of a cure tomorrow. Many of us may be in some form Disabled … But don’t for one minute get it twisted for we are very well Enabled! While everyone’s journey is unique, knowing that others before you have been through something similar can give you the strength encouragement motivation and inspiration you need to keep everything in perspective. We are NOT just Thriving, We are Surviving and Purple is our signature color! Life – A Race Worth Fighting For!

Purple Power!!!

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email : Webview : The Devastating Impact of Sarcoidosis

email : Webview : The Devastating Impact of Sarcoidosis.