Co-pay restraints

One of the biggest issues persons with chronic illnesses suffer from is not having enough monies to live on, yet alone to cover all of our medical expenses. Many of us have to rely on our SSI to cover our food, shelter, clothes, utilities, medicines, labwork, copays and travel expenses. What we receive is never enough to handle a third of these things. This is why you will find that many of us going without each month and or becoming homeless. That could mean not taking our needed medicines, eating healthy foods or eating at all. Not living with needed heat/air, fresh clean water and sometimes the necessary medical treatment that we need to survive. Many of us avoid going to the ER during emergencies or better yet utilizing ambulatory services because we just cannot afford them. This is sad but very true.

I am disabled and had to leave a job I absolutely loved 21 yrs ago. Going from a very nice two paycheck family to one is very difficult. Watching my amazing husband work two to three jobs at a time to make our ends meet is killing me more than my Chronic illnesses. The little monies I receive each month doesn’t even put a dent in my expenses. We have a strict budget that we adhere to but it changes all the time with each flare up I have. Just when we think we have a handle on it, something changes. This time it was an all of a sudden copay for a specialist that I have been going to for over 5 years. Usually with two insurances, one would offset the other, but not this time.

This has been a continuous factor with me will all of my specialist’s for as long as I can remember. Especially since I was finally added to my husband’s insurance. I experienced an emergency last week and was told to come into the doctors office on Friday and then again for a follow up appointment today. What we didn’t expect was to be hit with a copay issue. My husband and I looked at each other like two deer stuck in headlights. Both of us trying to decide who had the money and also which bill would not get paid this month. I looked at my husband when he put his debit card in the receptionist hand and felt even more of a burden to my family. We really don’t have anything to spare, but then she hit us with a double charge for both Friday and today. That hurt bad. Both of us will suffer from overdraft fees this month, meaning we will be paying a lot more than what was paid today. Sucks for us big time. So what do you think my next step will be? Me too. 😣☹

Anyway, thanks for letting me vent. Peace and blessings to you always and forevermore. 💜❄💜❄💜

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