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. 💜❄💜❄💜
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.
Please take a minute out of your day and call your State Senators and Congressman/Congresswomen to vote against Paul Ryan. We cannot go back to less than optimal care for our chronic illnesses. http://mobile.reuters.com/article/idUSKCN0XP00C
Woke up this morning after a very sleepless night feeling heavy. Muscle and joint pain with spasms caused me to require assistance from my husband to get dressed and downstairs. When asked what was going through my head I stated that I felt as a failure to be a mother, failure to be a wife, failure as a Sarcoidosis Advocate and now failure as an Acti-Lab Ambassador. Why, because my health is deterring me from living as I ought to be. My 50th birthday is this upcoming Friday, June 3rd. Where I wanted to be and where I am now is not as I expected. The problem is should I accept it or should I change it.
Two new masses found on my lungs, a breast cancer scare, Cardiac Sarcoidosis issues, NeuroSarcoidosis issues, Fibromyalgia flare, new doctor, multiple testing, new medication changes, medical insurance issues, etc… This is just been the last three months. This could make a person very stressed and it has. I watch my husband working himself to death just trying to make ends meet. He never asks for help and he never complains, but you can feel his spirit shift. I am scared for him.
The only way that I could help without sitting on the corner with a cup in my hand was to find something that I could do when I could do it. Something that is not so stressful that I would get overwhelmed. So I started my own business and it is, not for not trying my damnedest, getting off to a slow start. I thought that of those that are most important to me, would have been my first clients. Not happening. No, I cannot work in a normal setting due to my illness and knowing this I thought that support would have come fast and everyone would be happy that I am trying and that something has motivated me to strive to continue to fight. I understand that everyone has financial problems and I can relate, which I why I jumped into this venture. There is even opportunities for those that can to join me with trying to make some extra income.
Why am I stressing? I truly don’t know because I trust that God has a plan for me. Sorry for venting.
My name is Marilyn McNeill and I am a wife, a stay at home mother, a Sarcoidosis Warriors and an Acti-Labs Ambassador. I am your Sarcoidosis Beauty Warrior. I can offer you products for beauty, skin and weight loss. Acti-Labs is offering me the opportunity to not dwell in the misery of my illness. I have something to aspire to be. To be self sufficient and self sustaining again. Sarcoidosis took away my independence, but being an Acti-Labs Representative is helping me to gain it back. I look forward to helping you with your beauty, skin, and weight loss needs. Take a minute and check out our latest products and while you are there please register yourself and your friends. http://acti-labs.com/me/marilyn-mcneill