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.
Something to keep me busy and able to make money to help offset my medical expenses was presented to me by another Warrior. I am love with this venture! It allows me to sell wonderful products that I use and make money from the comfort of my own home. Many of you know that I am battling a rare and incurable debilitating illness known as Sarcoidosis. Because of this my mobility and living with 24 hr. oxygen support has deemed me disabled. Well with medical expenses increasing each day, I had to find a way to offset that and thanks to my Sister/Friend and fellow Sarcoidosis Warrior, I was presented with a golden opportunity.
Acti-Derm! Offers products for your skin, hair and body. Visit my website and check out all of the wonderful products.http://acti-labs.com/me/marilyn-mcneill Trust me, I am not usually a make-up wearer, but these products are mineral based and left my skin feeling and looking very natural. (pics to follow) There is also opportunities for you to save on the products you purchase by referring a friend to my site. Just follow the links on the page and save. Oh, by the way, the Lipo Sculpt or Thermo Slimming Wrap Kits helps you to remarkably shred inches in a matter of minutes. Verifyably tested and shown to work on arms, thighs and stomach. All of the products will be available for purchase on Mother’s Day, May 9th. So please, check out my Acti-Labs website and help make your life more beautiful. 😉 http://acti-labs.com/me/marilyn-mcneill
Happy New Year 2016
Yes I am happy to be alive as we start 2016, but no I am scared. Why, because everything is closing in on me and my family. Shut off notices threatning the very machines that I need to sustain my life. Notices that may place me and my family on the streets. Procedures that if I don’t have can cause my death. This is what I am facing because of this invisible illness known as Sarcoidosis. So what I truly pray for during this beginning of 2016 is a cure and a financial miracle. This disease affects the entire family. My SSI barely covers my medical expenses so the weight of it falls on my husband. He’s gonna kill me for posting this because he is a very private person, but the truth is the truth. Not sugar coated. So if you don’t hear from me for a while please know that this is what we are facing. Now here is the hard part, if you can please help and donate to my campaign. http://gofundme.com/marilynsfight4life Every bit helps. Continue to pray for me as I will continue to pray for you.
Finally up and running. Our family’s United front against Sarcoidosis. We’re fighting for a cure!
Support Sarcoidosis Awareness & Research
Lately I have been dealing with excruciating pain throughout my left side. In visiting with my PCP (primary care physician), she suggested that I see a few more specialist including a cardiologist for my heart palpitations. The pain in my rib area is not new. I have had it for years but the doctors never addressed it. The statement was and I quote, “must be muscular.” NO!!! Now that the pain has exacerbated throughout my left side down to my toes, testing and specialist are needed. Well today I have been told that I need knee surgery. Still have to see Spine specialist who will be ruling out or confirming musculoskeletal Sarcoidosis. My blood pressure has been elevated even though I am taking two meds for this. The heart palpitations are keeping me up so I am happy to find out the cause. My PCP believes that the elevation is due to meds and my extreme pain. I just don’t want anything overlooked due to assumptions.
Another thing that I want to please state to those that are still following my updates, I truly appreciate all of those who have donated to my cause, but please do not separate yourselves from me believing this is all I represent. I have heard, “I don’t call or write because I can’t donate.” Sad, huh? Well it hurts me to the core. I do this to bring awareness about Sarcoidosis. I do this to give you a glimpse into my daily journey. A journey that we Warriors deal with on a daily basis. Some worse off than me. I do this to give a voice to those who can’t. So please don’t hesitate to reach out to not just myself, but others who are in situations like me. The worse thing that we Warriors face outside of our pain is loneliness. Family and friends tend to extract themselves out of our life because they don’t want to deal with our struggle. Imagine how you would feel if the shoe was on the other foot per se. Not a good feeling. Prayers are good but just letting us know that you care can make our journey a little easier.
If you you would like to donate to my campaign, I say in advance, thank you so much because I truly need all the help that I can get. http://www.gofundme.com/marilynsfight4life
If you would like to make a donation towards the research for a cure, please go to: http://stopsarcoidosis.org which is the Foundation for Sarcoidosis Research (FSR).
Again, I love you all and will continue to pray for you as I hope you pray for me.
. Our family’s United front against Sarcoidosis. We’re fighting for a cure!
OMG, I have been on the phone all morning and part of the early afternoon reordering meds and trying hard to still receive one of therapeutic inhalers. My patient care advocate and my PCP have been battling with the pharmacist going back and forth with preauthorization’s for 3 1/2 weeks with no end in site. Not having this inhaler is wearing on me especially since I rely on 24 hr. oxygen support just to breath. My lungs are really working extra hard. Causing me to experience chest pains. Pray for me.
T-shirts are available for sale. All proceeds are used to help pay foU IIr my medical expenses. Please email your request to firstname.lastname@example.org.
This is a great site and also it provides templates for Sarcoidosis pamphlets that we can use at our awareness events this month.
Also, here is a reminder for my upcoming event. Remember to R.S.V.P. to email@example.com. Also, T-shirts will be available to purchase on that day.
MFFL Event Poster 2015
Thank you all and have a blessed day.
Marilyn McNeill – Founder
Marilyn’s Fight for Life KICK SARCOIDOSIS Campaign
phone: (302) 521-2816
Facebook page: http://facebook.com/marilynsfightforlife