Hurting Heart

When one realizes what loneliness is, it’s difficult to process. With this pandemic happening and not knowing when it will end, I know many are feeling like the walls are closing in on you. You are not alone. There are many who are feeling the same way.

Lately I have realized, sorrowfully, how my late mother felt, Yahuah rest her soul. My mother would get up every day and make her cup of coffee, turn on Mrs, Fletcher or Law and Order and do her cryptogram puzzles unto she retired to bed. She would do this repeatedly until the day she died. I tried earnestly to call her twice a day to help fill that void of loneliness, but my sweet dear and loving mother had an emptiness in her spirit that was so hard to fill. See she was an only child who went on to marry her first love and had nine children, but sadly buried five as well as her husband of fifty plus years and her mother. That kind of loss leaves a person empty. She longed for and called out to my father on her death bed. I miss her so much. I am grateful that I was her child. I miss her sooo much it hurts.

Now it seems as if I have become my mother. Repetitively waking up every morning to a cup of tea, playing sudoku and watching Korean dramas or HGTV. Feeling lonely even though there are others in the home. Wanting to laugh and smile, dance or even take a walk, but feeling a sense of sadness at the same time because my health prevents me from doing them. #SarcoidosisSucks Missing the times when my family would have get together’s at someone’s home. When my sister’s and our brother and their children could spend time together. We were a very tight family. Now that the foundation have went on to glory, we haven’t had the urge to meet up.

I hope that everyone will know that this pandemic will end. Maybe not right now, nor in the near future, but it will end. Until that time, please remain vigilant and continue to remain quarantined to protect yourself and those you love from COVid19. Practice safe distancing and don’t rush normalcy just yet. We must think of the longevity of mankind and not worship money. TMH will provide.

Until then, peace and blessings to you and your family.

Marilyn

#Sarcoidosis #Fighting4ACure #LivingWithAnInvisibleIllness #LivingWithChronicPain

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. 💜❄💜❄💜

Feeling like my world’s coming to an end…

So it’s been a while since I checked in. Last time I was experiencing a major flare-up which turned out to be a combination of neurosarcoidosis and rheumatoid arthritis. Very, very painful and life threatening. After being told that there was really nothing that can be done for me anymore except to keep me comfortable, because my body is very sick; I prayed and asked the Most High to help me. I am still fighting on, but to be truthful, my body is tired.

I am not able to get the surgery to fix my spine. The pain and spine specialist stated that pain meds are what’s needed to keep me comfortable. And most recently, my Pulmonologist stated that it’s time for me to start the process for a lung transplant. I am scared y’all. All of my doctor’s are in agreement. When we told, my husband and I looked at each other in disbelief. My husbands first question was ab