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

Trying 2 Live My Life 2 The Fullest

Each day I wake up wondering how I am going to make it through the day. And at night I wonder if it’s my last. The pain is excruciating and the guilt of what I’m putting my family through is overwhelming. But I continue to fight on. Trusting that this too will pass. I find myself reading Psalms 71 over and over again, for in my lifetime Yahuah my Elohim has proven to be my doctor when I am weak. I give my all over to Yahuah and ask for healing from this debilitating disease and ask that he guides those that I entrust for medical care.

I have to see a neurosurgeon in July about scheduling surgical procedures on both my C-spine and my L-spine. Both areas are affecting my nerves and spinal cord. Scared? Yes I am, because of the possibilities of paralysis. Right now I am truly dependent on my family support for what many might take for granted; and also a walker to get around. I am looking into acquiring help for my entrance to be made handicap accessible.

As always I ask for prayers and I will continue to pray for you.

Peace and blessings to you always and forever more,

Marilyn

Another Days Journey in the Battle of a Sarcoidosis Warrior…

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

True Emotions

The Might: Dealing With Anxiety and Depression by Stephanie Roberts

 

I have to admit that I sometimes share the exact emotions as the author Stephanie Roberts has shared in her article post on The Mighty.

I try to remain a positive person and know that God has me, but sometimes your mind begins to wonder and those what ifs come into existence. I thank God everyday for my family stepping up to the plate as my caretakers. It is an overwhelming tasks. Just like this author expresses about all of the specialists visits and the times when I thought that I could prepare dinner only to have them wondering what they were going to eat later. Many days and nights I lock myself in the bathroom and cry because I don’t want them to worry as much, but they do because I can’t hide anything from them. They know about my mannerisms when I try to mask the pain. They know… I feel so sad for my husband because in spite of his own very painful leg due to an injury and his own medical condition, he still helps me with my everyday situations. I love him to death. My baby girl Kimora-Lynn has never seen me a day or night without pain. I was diagnosed right after she was born almost 18 yrs. ago. She doesn’t express her emotions to anyone. If she does then it is like an explosion all at once. She holds everything in. Not good.  I know. My two older children express their emotions through music. They are very talented lyricist, vocalist’s, producers and most importantly, multi-instrumentalist like their father. I am proud of them but they wear their emotions on their sleeve which can be dangerous. My son once argued with one of my old doctors because the doctor made a derogatory comment about my weight. I was on 60 mg of prednisone at the time. That was my last visit with that doctor. These are the things one deals with when you have both a very rare disease that is not known to almost all medical and human knowledge, it is more than most misdiagnosed, under funded federally and under researched.  Most of the time I have to educate those who I go to for care about the symptoms and problems caused by Sarcoidosis, Rheumatoid Arthritis and Fibromyalgia.

So this month is Sarcoidosis Awareness Month and I am advocating it to the fullest whenever I can. My hopes is that I can obtain at least a $500 donation goal towards a cure. Either through participation in my upcoming Team K.I.S.S. DE 5k 2017 Run/Walk for a cure or my Marilyn’s Fight for Life KICK Sarcoidosis Campaign’s fundraising page via the Foundation of Sarcoidosis Research. All monies go to funding for research and it’s tax deductible. I like to thank all those who have registered so far and also those who have hopes to register or just contribute. Thank you from the bottom of my heart.

So in conclusion I say to all of my Warrior’s, cry, blog, express any way you can about your emotions and what you are feeling truly and hopefully you will feel better in the long run.

HELP!!! I don’t know what is happening to me…

My muscles are weakening and twitching all the time. I have been dropping things constantly. My muscles feel like they are in a sleep state. That feeling you get when your leg falls asleep after being in a certain position for a long time. That annoying ache that you can’t wait to subside so you can move on. Well that’s not happening. From my neck down, all the muscles are in that sleep state. I feel like crying all the time. When I walk my legs buckle from up under me causing me to fall all the time. I use a walker as it is because of two recent Lacunar strokes. I fear this Sarcoidosis has finally won after 17 1/2 years. HELP!!! Anyone else suffer with this? I made an appointment with my neurologist in two weeks. It’s just lasting to that appointment. HELP!!!

TEAM K.I.S.S. DE 5K RUN/WALK 2017

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