I am getting sick and tired of smiling through my damn pain. I am really upset right now at whomever came up with that concept. WTF!!! When you are Fake, do not get upset if you do not receive the understanding and compassion that you desire. There is a saying that a lie begets a lie begets a lie. Meaning that the lie you tell keeps on building up the more you tell it and sooner or later that lie is gonna bite you in the ass.
What I am feeling right now is very lonely. Why? Because in the mist of all of my confusion of trying not to let on how much pain I am in, so as not to worry my family, a misunderstand intrudes. Just a simple conversation seems to always makes me feel like anything that I say will be the wrong thing. What I mean is that because of this stupid debilitating disease I am by myself 97% of the time, not discounting my two dogs as my only company. No one calls from my family except for one niece and my immediate family is so busy working and going to school that they barely have time for me. So at that one chance moment that we do come together as a family, it’s like whatever I say is the wrong thing. Don’t get me wrong. I know my family loves me, but I don’t think they get how lonely I have been for almost 18 yrs. There is no date nights for my husband and myself because we are barely getting by financially. Sometimes we go without food or I can not afford my very needed medication to live. I have been hospitalized three times in the last five months because of this. What does that say to you? The first was for pneumonia and congestive heart failure. That stay was for 2 1/2 weeks. The next was for the onset of a GI Virus in which I was the only one in the family to be affected. Whilst there I suddenly lost all feeling and mobility on my right side. I was diagnosed, after an MRI of my brain, with a Lucanar stroke. My stay this time was for 1 week and was discharged with PT and a home nurse. While undergoing PT in my 3rd week my BP spiked to 200/150 and where I had gained my mobility by 50%, I had another stroke. Another week in the hospital, but this time I was discharged with PT/OT and a home nurse. They also provided me with a social worker who helped me obtain my monthly meds.
So getting back to my earlier point, I am the number one advocate for positivity with other Warrior’s and I truly try to remain positive myself, but answer me this: How can you maintain positivity within yourself when you lack understanding about how you can be happy by yourself?
Peace & blessings to everyone who takes the time to read this,
P.S.: please check out my FB page to get information on the upcoming Sarcoidosis Awareness Month events. http://facebook.com/marilynsfightforlife
I really hate Sarcoidosis! This dis-ease has taken through many trials and tribulations over the last sixteen years. From being diagnosed in my lungs via a bronchioscopy and being scared to death each time I visited the doctor’s office thereafter. Every doctor asked if I was told how long I was told I was going to live to “you bet you should’ve never smoked.” The thing is, I never did. Next while participating in a clinical trial for a drug call Remicade back in 2001 at the University of Pennsylvania Hospital; Sarcoidosis attacked my sinuses. This resulted in three sinus surgeries and the loss of two of my senses; taste and smell. Later it has attacked my blood, bones, skin and eyes in no chronological order. Now, after an 11 day stint in the hospital after being admitted with congested heart failure and pneumonia, my blood pressures are hard to regulate. Went in with the first reading of 200/115. Scary as you know what. I was also told the my potassium and magnesium levels were dangerously depleted and I had to be admitted if I didn’t want to die. My family took it very hard and stayed with me after being admitted until 3 a.m. We cried, prayed and strategized because that’s what we do. I absolutely love my husband and children. So now what’s being said is that they believe that the Sarcoidosis is attacking my heart which is causing the irregularities in my blood pressures. I am on so many different meds for my blood pressure. One in particular, Hydralazine, causes severe headaches sometimes after I take it. So this brings me back to the title, after the scare of congested heart failure I am fighting for my life with a vengeance now. I want to live a long healthy life. My goal is to eventually get off of these meds and find a way to build my lungs back up to wean off of the continuous Oxygen. So all I ask is for prayers for a healthy recovery please.
As always, peace and blessings to you all. Until next time be healthy, happy and please support Sarcoidosis Awareness by donating via http://stopsarcoidosis.org.
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.
Here it is 16 years after my diagnosis and the knowledge of what Sarcoidosis is or where its origin began is still a mystery. Why is this? I know for a fact that we Warriors are still fighting for our lives. We are still spreading Sarcoidosis awareness throughout our communities and on social media. We are still wearing our purple and holding our events. We are still obtaining proclamations from our governors of state. So what is the hold up? Why aren’t there more specialists out there to treat the many symptoms and problems caused by the disease and the medicines used to treat it? Why are we still not being treated in the emergency rooms across the country properly? Why isn’t there funding to find a cure? The answer is simple. They don’t care because it is not happening to them. At least that is my opinion. They are not suffering from the debilitating pain. They are not feeling their lives slip away. They are not dealing with the financial strains that the disease brings on the family. They are not dealing with the lengthy and costly misdiagnosis processes. They are not being looked at like they are crazy.
No energy. Tired of being tired. Pain beyond comprehension. Frustration and loss of self. Financial strain. Loss of friends and family who do not get what Sarcoidosis is or what it does to you.
If anyone else has an answer, please tell me.
Peace and blessings,
United front against Sarcoidosis. We’re fighting for a cure!