…Sarcoidosis Awareness: for the love of Faye

©2012. Erin's Echo. Erin Adams-Phillips. All rights reserved.

 

This is a short version which turned out longer...it was hard to type...I left out much of the somber days of pain, not eating, sleeping, and praying! But still, this is my story...my fight...my battle with Sarcoidosis!

I can still remember back in 2007…not even a year away from my comfort zone…my family…all I knew…I had left behind. Now, I’m in a strange city, commanding Phil to call my sister, Bonita, as I look at the doctor saying "she’s really sick"…Phil gets Bee on the phone…"They say I have internal bleeding”…Bonita is in Alabama on the phone with doctors, “Test my sister for Sarcoidosis!”  I'm not sure if the doctors heard her cry. Though they said I wouldn’t make it through the night, I did…and many more nights. However, it would take 3 long years before they finally write and say, “Erin, you have Sarcoidosis”.

Me/Erin & Anita "Faye" Leggittee--RIP, Faye!

I decided to share my difficult diagnosis this month for the love of Faye—Anita Faye Leggitte is my 1^st cousin and Godsister. She, too, had Sarcoid and she passed away in 2003 at the tender age of 40. I have never revealed to anyone but my family what I had to deal with regarding Sarcoid. In fact, I never told them the whole truth until I went home to visit and realized I left some much needed medical equipment. I had to tell them the truth at that time. I can still see the look on my Mahm’s face. 

When people say Sarcoid attacks the lungs, that is true, but not the WHOLE TRUTH--I hate when people refer it to Lupus--they are not the same…Sarcoid can and it will attack anything from the smallest organ to the largest, your skin. The first attack was on my pancreas. The doctors could not figure out why I had chronic pancreatitis; my gall bladder was fine.  I was never a heavy drinker. My liver was fine…all was puzzled…I was in  PAIN. Now, I can’t breathe. Oh my, God! Docs say, ADULT ASTHMA! ~roll eyes~ Shortness of breathe and I worked out…Phil and I were on the track almost every day. 

Next, my sight went. It started out blurry...then became fuzzy. Then just like a light. I read lips for goodness sake...now I can't see~! The doctors said it was due to my pancreas not producing insulin and I was experiencing Type 1 Diabetes symptoms. All those days? Come on now! I’m partially deaf, at that time, partially blind, but never dumb! Type 1 Diabetes causes you to urinate often…I couldn’t urinate at all! So what goes next;  my bladder. So, here I am…cannot eat, regurging like crazy, can’t see, and I can’t urinate! I was so swollen and it hurt to be touched. I felt like an invalid. I would stay secluded and just cry. I would pop med after med and just tell my kids, “I’m all right. I’m okay,” and smile. I hated being sick and not knowing what was wrong with me. I was tested for every cancer possible as well as Lupus and other auto-immune diseases.

One of my infamous hospital stays!

I literally wanted to die! I felt I was suffering…this was crazy!

Finally, I got into a program with several different specialists. They requested all my records from Alabama and all the ones from Ohio. It turns out that not only did I have abnormal EKGs and chest x-rays in Ohio, I also had them in Alabama. However, in Alabama, I never did follow-up ~my mistake~.  The only other things in Alabama were irregular thyroid counts, anemia, and the heat made me very exhausted…not tired….EXHAUSTED! I hated to go outside…I always felt nauseous and faint. 

They started to do blood tests on me every week. The key was to look at my ACE blood levels. They were consistently elevated. This confirmed with the chest x-rays that I had Sarcoidosis—multi-organ: Pulmonary, Digestive, Urinary, and later Lymphatic. 

We learned that I do not have chronic pancreatitis; Sarcoid mocked pancreatitis…also, my mouth. My saliva was just gross to me. I had polyps in my mouth, for the first time ever in my life, I lost a tooth! I have never lost a tooth. Sarcoid attacked my teeth. Thankfully, I have only lost one and the meds are helping. My skin…my once flawless, beautiful skin…butterfly rashes…who termed them rashes? I don’t know, but I call them babies BLISTERS. They hurt like hell and they leave permanent scarring. God is good, because I have not had an issue with my teeth, skin, nor salivary glands in a while now. 

My colon! Yes, my colon! I went to the hospital ER in pain…thinking it was just Sarcoid in my pancreas and they immediately admitted me because my colon was swollen and had I not got to the ER I could have died due to a rupture! Sarcoid is a bitch! Every symptom is important! I’m like WOW! This is crazy!

Phil & the kids sleep after an unexpected hospital admittance

My pancreas is the only thing that gives me issues every now and again…today is that NOW and when I go into a flare-up, my lungs act out, but not to a point where I get totally sick. I have to be over cautious to avoid pneumonia and ensure to take annual flu and pneumonia shots.

Urinary—Bladder. I don’t have issues with my bladder now and that is a major plus. I have the best Urinary Gynecologist (URI-GYN) known to womankind! She did so much research. We had never heard of Sarcoid attacking the bladder. I found out through a friend that she had a friend who lost a kidney to Sarcoid. My doctor did research and YES…granulomas! Now, Sarcoid has attacked my bladder. I could not urinate. I feel into a depression so deep! I can’t even remember if I told Bonita the whole truth. I went into the Dr. office weekly to have my bladder flushed with saline water….they gave me pills that made my urine orange (I forgot the name), but they did not help…I still couldn’t urinate. So, I had to go in to be catheterize and then a saline flush…I had a therapist who taught me exercises to strengthen my muscles…I didn’t need help with that hahaaaaa….that wasn’t the issue, honey! That part of me worked juss fine, you hear me!? Phil was not complaining and neither was I…until after and I couldn’t urinate!  Standing in the shower…nada….sometimes it would take me over 30 minutes to let go one stream and then I’d yell because I didn’t have the strength to get it all out….it was awful. My children would wait it out with me...they even said, "Just show me how to do it...I will do the needle!" WOW...I am blessed!

The docs and nurses know her by name!

Finally, I had to learn to self-catheterize! The nurse was a gem. I cried…I yelled…she patted my back…telling me it was okay; yet, I would not be able to leave until I did it correctly. After sobs and prayers, and a nap lol…no joke, I cried myself to sleep…I asked for the mirror again and I did it. She clapped…I was proud too…I cried…but oh, the relief! She still made me do it two more times to ensure I didn’t just get lucky hahaaa…..Depression is now at an all-time high…I get home…have to urinate…can’t do it. I can’t get the needle right…I’m fussing and cursing and damning Sarcoid. Finally, on Phil’s birthday, I had a breakdown! I threw cake…I threw food…I yelled….I cursed everybody out—I had been suffering in silence and I had to urinate and couldn’t. He just looked at me…helplessly! I was so mad…so angry! I was swollen…I was in pain…I wanted my Momma! 

As soon as school let out, that is what I did…I packed my car…my kids and went to my Momma…but I left my needles. Now, I have to tell my Mahm, I have been home for 3 days and haven’t urinated. I self-cath 4 times a day. I had to explain why I was swollen…irritable…in pain….she was so scared. I had the worse attack…I just cried. She begged me to go to the hospital, let them cath me! NOOOOO….too many people I know and loved walked in and came out in body bags…I will just go on back home. I drove back to Ohio. Left my kids in Bama…stayed in Ohio for about a week and went back to Alabama with no intentions of coming back to Ohio, but I ended up back here after all. 

Who is the patient? Phil sleep I was woke!

That was hard on my Momma! To see me like that. I didn’t want anyone to pity me nor feel sorry for me. I never wanted for her to see me that sick, you know? When I was home last, the smile on my Auntee’s face when I told her my bladder works now…that may seem like nothing to some, but for her and for me, that was priceless. I fought back tears. My Mahm and my Auntee…they’ve buried their parents, their sisters, nieces, nephews, and my Auntee has buried her oldest and her youngest sons. I draw strength from them. Auntee said, “We know a lot about Sarcoidosis; it has been in the family for years!” She did not say it like a professional…she said it like a woman who has watched this illness wreak havoc on her nieces. In other words, come home if you MUST, we will take care of you. 

She also knows, I am the product of her…the product of my Mahm and their mom….I don’t want to seem helpless…I do not want to be a burden. I am a woman of strength and a woman of courage. I am not too proud to go home and let my family help me…take care of me even. They would do it without a second thought. I feel I am getting better. Moving South is still in my plans. I am not writing off anything at the moment. They understand I MUST do what is best for my physical, emotional, and mental health as well as provide stability to my childs!

My Daughters and Me

I remember saying “if any of my mom girls have to have this disease, I hope it be me, because my sisters couldn’t handle it”…now I find myself saying, “Dear God, please, let it skip my daughters!” 

I hate when people say "you don't look sick"

My name is Erin…I am the face of Sarcoidosis. It isn’t just in my lungs…it is in my bladder, my colon, my salivary glands, my pancreas, and even my skin! Yet, I smile…I smile wide and with pride…because regardless of how many images I take a month, no matter how many PFTs I take a month, and the meds they keep me on, I ensure I always take my Vitamin G—that’s God! I don’t pray for healing…I pray for humility and for endurance…so far, so good…because I am worthy and God said that!I have Sarcoidosis, Sarcoidosis does NOT have me!