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

I’ve left Facebook for good..

Just an update

No more Facebook for me. Slowly but sure I will eliminate all of my social media attachments. Mental health is very important.

Peace and blessings to you and your family

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

Chronic Flare-Up

I just wanted to share with you guys about the severe neuropathy flare that I’ve been experiencing for the last 2 1/2 months. So severe that I have seen three doctors just to get some answers and some relief for my whole body swelling to the point it seeped fluid.

My legs and feet were so hard that they didn’t even pit. My husband and I didn’t think it was fluid at first. It literally felt like I had fifty pound weights attached to each leg. I have to be assisted with everything including washing and eating. This pain is extreme. My hands were the worst. They literally have no feeling in them. Typing this is very painful but I had to share my experience. My hands felt like they have frostbite and they are on fire at the same time. Rubbing them didn’t help. The only relief was to submerge them into scalding hot water. This kept me up all night. Each joint was so painful that I couldn’t even hold a fork or cup. The main problem was trying to get the doctors to understand what I was explaining to them.
So the final diagnosis was both a rheumatoid arthritis and neuropathy flare at the same time. The treatment was to put me back on 10 mg of Prednisone again. I had been weaned off of Prednisone 5 weeks before after have taken it for 20 years for my Chronic Sarcoidosis. I was also prescribed Baclofen, which is a muscle relaxer for the severe spasms that started with the flare.

The swelling has receded some and my mobility is very strained because of the trauma to my body. The doctors have all stated that is all they can do because my body is too sick. This all to say, please keep me in your prayers.

Marilyn
Marilyn’s Fight For Life Sarcoidosis Advocate/Warrior

Marilynsfightforlife@live.com

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

I’m Still Fighting On

I'm In PainI hope that no one is taking my blog as me vying for attention. No, this is my journey dealing with this disease and also to note the lack of knowledge of this disease in the medical community. Not for naught, but because we need more funding for research to find not only a cure, but also better treatments that do not cause so much harm to our bodies outside of the damage that the disease causes.

The most important thing that I wanted to share with my fellow Warriors is to fight for your life. Don’t think that you don’t have a voice. It’s your life. You know your body better than anyone. It took me to get a second and a third opinion to get action. Results were that my medical care was very inconsistent from all of my specialist’s.

The Sarcoidosis specialists requested that I receive a cardiac catheterization to find out why my BPs are unregulated. My cardiologist shot it down.

I shared with you before that I experienced two congested heart failures and several TCI’s and finally a Lacunar Stroke to say, WTH are they doing to me because it’s not working. Experiencing blood pressure’s in the 200/100s range for over three years and taking five BP medicines to no avail. Basically having a key to the hospital staying five nights or more at a time is overwhelming not only to me but also my family.

Okay, here we go. Update on my battle with Chronic Sarcoidosis. I have been recently diagnosed with Neurosarcoidosis, Cardiacsarcoidosis with damage done to my kidneys from lengthly stress from my heart related to medications. I was experiencing this burning, yet very painful burning in my extremities. Also, double vision, numbness and blackouts. See, that’s a lot. Ive experienced blackouts and numbness in my extremities before, but never to the point of just collapsing and needing assistance 24/7. I am confined to my home while I take high doses of Prednisone (no immune system) and the fact that I am very weak. Yeah, I miss my family’s visits, but they are just a phone call away. (Thanks technology 😉)

I had requested early in when I first experienced the CHF (congestive heart failure) that I have a PET scan, which is one of the best ways outside of a biopsy, to find where the active Sarcoidosis is in the body (more info @stopsarcoidosis.org). Every doctor both inside the hospital and out shot the idea down. Well finally my new doctor who is THE Sarcoidosis specialist who reviewed my case ordered one. YES!!! It was as I expected and now I have to hope that the treatments work. I don’t want to die… Especially to medical error. So now is the waiting game to see how this goes.

Remember that you know your body better than anyone. If you feel that the treatment you are receiving is not adequate, don’t be afraid to take action.

Peace and blessings to you always and forever more,
Marilyn

Another day’s journey and I’m so glad…

It’s been a while since I’ve blogged and so much has happened.

All I can say is that this disease can and will take a toll on you. I know that each person is different, but with me I have been feeling weaker and more dependent on my family to help me with my daily routines. Lately, I even need assistance climbing the stairs. My legs are like weights sometimes or completely numb.

More diagnoses, hospitalizations, testing and loss of current specialist. Yep, I’ve lost my primary care physician and my Nephrologist. This happens to me a lot. Thank The Most High for my Home Care Nurse Alicia and my Physical Therapist Mark. They have helped to make sure that I have all I need with my physician’s and or medicines. I don’t know what I would do without them.

I know that something is going on with my body and it has the doctors baffled. My blood pressure is still not regulated, my sugar is all over the place, I’m experiencing burning and pain down both arms, my weight has dropped, my appetite is non existent and I am experiencing stomach issues again (sometimes only tolerating a liquid diet). But I am hopeful that the Most High will send someone to me with the knowledge to help me and that a cure is on the way. I will not give in to the pain and discomfort. For it is written in Joshua 1:9 (KJV); Be strong and of a good courage; be not afraid neither be you dismayed: for your Elohim is with you where ever you go. So I will continue to fight on. Through it all I know that The Most High got me.

Peace and blessings to you all always,

I am a Sarcoidosis Warrior