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

Another Days Journey in the Battle of a Sarcoidosis Warrior…

#MarilynsFightForLifeKICKSarcoidosisCampaign #Fighting4ACure #LivingWithChronicPain #LivingWithAnInvisibleIllness #SARCOIDOSISAWARENESS #SarcoidosisWarrior #RareDisease #SupportSarcoidosisResearch #ASongForLife #FoundationforSarcoidosisResearch #FIBROMYALGIA

What else do I need to do?


My feelings are that, just so so. I ask myself, have I done all I can do?  Things have not went as planned. I believe I have lost faith in the people of my state of Delaware. No matter how much I advocate for Sarcoidosis and its affects on its patient’s that battle it everyday, no one seems to care more than me. I guess because I am literally fighting for my life. Each year my body gets weaker and weaker as more areas of my body are attacked. Especially this year. So I ask people to help with the various tasks to get the word out and to get people registered for the 5k event this weekend coming. My count is menial. I receive updates daily from FSR and they never change. I have invited our States dignitaries and also my medical teams. Invites sent in every means available. No responses except from one, Senator John Carpenter. His team told me that he couldn’t make the event but he would make time for me as soon as everything settled down in D.C.  I appreciated that. At least he took the time to reach out. Usually I received a proclamation by this time. None… I am so disappointed in my State. They turn out for cancer all the time. They just had a huge event for autism. I applaud both of those turn outs, but okay my cause matters as well and it is affecting hundreds of people of all ages and nationalities here in this State. We need support. Sarcoidosis is a rare disease that is unknown, incurable, debilitating, underfunded and sometimes deadly.  So am I wrong for losing faith? Having invested monies that I don’t truly have to get the word out so that we Sarkies can get help raising awareness and hopefully acquiring donations towards finding a cure; disappointment and hurt is what I feel. Like no one cares if I lived or died. 

Happy New Year?

Happy New Year 2016

Happy New Year 2016

Yes I am happy to be alive as we start 2016, but no I am scared. Why, because everything is closing in on me and my family. Shut off notices threatning the very machines that I need to sustain my life. Notices that may place me and my family on the streets. Procedures that if I don’t have can cause my death. This is what I am facing because of this invisible illness known as Sarcoidosis. So what I truly pray for during this beginning of 2016 is a cure and a financial miracle. This disease affects the entire family. My SSI barely covers my medical expenses so the weight of it falls on my husband. He’s gonna kill me for posting this because he is a very private person, but the truth is the truth. Not sugar coated. So if you don’t hear from me for a while please know that this is what we are facing. Now here is the hard part, if you can please help and donate to my campaign. http://gofundme.com/marilynsfight4life Every bit helps. Continue to pray for me as I will continue to pray for you.