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Happy Heavenly Birthday Mommy!!! 😘😘😘💜💜💜 Missing my greatest supporters. Nothing & no one can replace your parents. With all that is going on right now, I wish for just 1 more long talk with some hugs & comfort attached. 😞😞😞😞 Just having a moment, sometimes too many things go on all at one time. #MissingYou #SarcoidSucks #ADivasWorth #DivaStrong #WarriorForLife (at Diva) https://www.instagram.com/p/Coo3dywu4O09wM_GftFRd6e2PRmauGMc07ImDc0/?igshid=NGJjMDIxMWI=
At my vacation spot....but at least I'm not in ICU. Sarcoid rearing is ugly head, but I'm where I need to be to get better & back on track. 🙏🏾🙏🏾🙏🏾🙏🏾💜💜💜💜💜💪🏾💪🏾 #WarriorForLife #SarcoidWontWin #DivaStrong #ADayInTheLife (at Mercy Fitzgerald Hospital) https://www.instagram.com/p/CnZr9FsOgj9vFQ3MUGrAl9QRaSPL-UsS3eFynM0/?igshid=NGJjMDIxMWI=
Hey Fam & Friends, I know I have been MIA for a while but I'm going to get better with communication and keeping my promise to stop dropping off the face of the planet. I got the messages & phone calls and I'll start catching you all up (those missing some of the pieces) with this so appropriate memory .. And things only got worse from there. #ButGod It also doesn't help that I lost a few of my main supporters & vent partners. The ones who understood that I have never questioned God and never lost my faith but I am still human as well as the one many consider to be the 'strong' one. Sometimes they forget that I need that shoulder to lean on as well. With the progression of Sarcoid, the only people that truly knew how bad things were are no longer here. #ButGod spared my life and is keeping me for a reason. I know that one reason is that He knew He was taking Daddy and my sister & I would need each other more than ever especially with her breast cancer diagnosis and surgeries. Cindi House-Fields , you know I got you Baby Sis as always. And now with the blessing of my license being restored, I can be mobile and help more #BlessedBeyondMeasure #WarriorForLife and with the recent agency changes, what we all (including the aide that was leaving me) thought was an iffy situation actually turned out to be such a blessing...again #ButGod And with the Carbon Monoxide detector going off and both the Fire Dept (2nd Family) and PECO confirming both a gas leak & carbon monoxide leak, we were able to get out of the house and I made it without a hospital trip and got closer to my neighbor. I thank God for the gifts and spirit with which I have been given. Sometimes it gets me in trouble but I can't change the person He created me to be. I've often said that I must have counselor stamped across my forehead and I got the #ContinuedConfirmation that it's not a stamp but a glow surrounding me. That's my #DivaStrong and why I can continue moving forward and doing things that still amaze & astound the medical & social professionals as they go through my file for supportive services. I hate the phrase "You Don't Look Sick" but so blessed that I don't look like what I've been thr https://www.instagram.com/p/Clhu1RdNr5MupPKH6ytvcwNhcuDG75o6yU7hiA0/?igshid=NGJjMDIxMWI=
You know you are loved and truly cared for when everyone from your caregiver to your nephew want to make sure that you are safe. I have everything I need on & around the bed, snacks and drinks included and the last person to make sure I was in /on the bed was my Munchkin. We were playing computer games when I had to refill my cups and since we video chat, he could see that Ti-Ti was actually filling up the cups and bottles and he finally said good night when he could see blue walls & my table. This year has truly been a rollercoaster ride that I wouldn't wish on anyone #ButGod The storms may be raging with the billows tossing high, yet I'm still blessed and will continue to be a blessing to others. God assigns the tests and trials to His strongest soldiers because He already knows you can handle it. He has already qualified you for the test. We just have to keep our hearts and minds in prayer & praise mode and remember that #WeFightToWin #SarcoidWontWin there are too many people praying & fighting for your defeat. Progression may slow me down but it will not stop me. 💜💜 ~Sarcoid Diva~💜💜 #BlessedToBeABlessing #DivaStrong #ADayInTheLife #SarcoidWarrior #AnxietyWarrior #WarriorsForLife #PurplePower https://www.instagram.com/p/CjhKGQQN6nwYR1KJDFjKUdOx-ztusbdA4I5muY0/?igshid=NGJjMDIxMWI=
I've been going over conversations that I have been having for the past few weeks with fam, friends, medical team and my home health advocates. In light of recent events, I'm updating my medical records and making sure all of my emergency contact information is in place. As we were going through trying to make sure all medical issues documented, everyone was running out of space on their various systems. Even I was having trouble since I had to change phones to upgrade to changing technology. It was then that old feelings began to creep in when the comment was made "How can one person go through all of this?" #ButGod I was immediately taken back to April 7, 2007 when we thought receiving a diagnosis of Sarcoidosis was going to be easier to handle than the other medical possibilities. Boy, were we wrong & definitely not prepared for my insides to look more than 20-30yrs older than my outside. This presented an obstacle when discussing treatment. Back then the damage to my lungs were already extensive and due to the damage was rated at a Stage IV so most people only live 2-4years after diagnosis. Based on what they were reviewing in the file, the recommendation was to provide palliative care and pain control assuming age was in 60s-70s only to turn the page and realize I was in my early 30s. #ButGod Plans then changed to be aggressive with treatment & prayer to be on one accord.Today as we are updating, finally everything is entered completely, but still reads as end-stage, they are shocked to realize the devastation of this rare debilitating disease called Sarcoidosis. Some had heard of it but only mild cases or cases of famous people who look fine. Even family is stunned for a minute but know God kept me here for a reason. I feel so blessed again because this team also stopped for a word of prayer for us to be on one accord. Once again #ButGod and I'm a blessed Snowflake Butterfly 🦋❄️❄️❄️🦋 💜💜💜💜 #PurplePower #DivaStrong #ADivasWorth #WarriorsForLife https://www.instagram.com/p/CbHyQcLuRjI30ecycWATQDvByy-tEPBtD75T5g0/?utm_medium=tumblr
I really, truly hate being frightened to the point of having a panic attack. Then the PTSD really sets in and I see things everywhere. I thought I was over this, now I see I have to change things around. Now I have tears and the chest spasms. I have 3hrs to get it together because if not I know my aides have no problem dialing 911 and that's the last place I want to be. I hate this but I know that together we should be able to come up with another solution. My home is supposed to be my comfort zone, where I am the safest. I just got out of a deeply bad moment, I'm not trying to go back to that place. #DepressionIsReal #AnxietyWarrior #GodGotThis #PurplePower #DivaStrong #IFightToWin #PTSDNotFun #ButGod 💖🌹~All My Heart~🌹💖 💜💜 ~Sarcoid Diva~💜💜 https://www.instagram.com/p/CWvR-VMFQ1-3EY2ugh-NkaNN6BbMmoLR1NECHQ0/?utm_medium=tumblr
Hey Fam, Keep me in your prayers, catching up on my appointments. Right now I'm doing the sleep study as well as getting my CO2 levels checked. Stepping out on Faith because as I always say #GodKeptMeHereForAReason He gives the hardest battles to His strongest soldiers. Sometimes I just wish He didn't trust me so much. #ButGod #DivaStrong #PurplePower #WarriorForLife (at University of Pennsylvania) https://www.instagram.com/p/CT3tAo2LlL-ZCInzf64vawvhojo0rR_Ec-gEXc0/?utm_medium=tumblr
So blessed that aides that don't even work with me anymore still check in. This time I got my hair done. Purple Passion for many of my diseases and disorders. This really lifted my spirits. I just can't thank her and my other aides for keeping up with me and truly letting me know that we are family. My new aides have started this week and so far they too are a good fit. Thank you God for your many blessings and Continued Confirmation in all things. #PurplePower #WarriorsForLife #Divalicious #Divafied #DivaStrong https://www.instagram.com/p/CT0XjM-lelBeGi3oIKLU1aGFxe0MxMh0_ByoiI0/?utm_medium=tumblr
