Waiting To Know

After 3 months of steady health problems, which gradually got worse, I finally went in to the doctor. A new doctor, someone I hadn't seen before, and my first "primary doctor" for myself since I was a child. She listened quietly and intently while I told her my list of symptoms... a feeling of tightness in my chest, chest pains, unable to get a deep breath, feeling like my ribcage was in a vice and getting squeezed, short of breath with even a little activity, chronic cough, exhausted beyond belief, and aching throughout my body so deep it felt like my bones were breaking. Dr. V ordered a chest xray and some lab work. She also had me do a breathing test which came back pretty low. That was on Friday, May 4th.

Monday, May 7th, a nurse called me to say that the chest xray was concerning and had shown "multiple black spots", my doctor wanted me to get in ASAP for a chest CT scan. So, we went in that afternoon. At 5pm the same day, my doctor called to say that the CT Scan was also "very concerning" and she wanted me to get in to see a Pulmonologist ASAP. She said that what was showing up in my lungs could be caused from a number of things, the top 3 being Tuberculosis, an autoimmune disease, or chemical inhalation... and that cancer was also NOT ruled out. At this point, I only knew that there were "black spots" in my lungs.

Joey and I spent the next few days wondering if it were cancer... wondering if we would be told that I had no choice but to wait to die. Lung cancer is the most aggressive and deadliest cancer, and if I had cancer in multiple spots of my lungs... we could only think of the worse. It was the strangest feeling I've ever had. To be faced with the very real possibility that I would be told I was going to die, and soon... was surreal. I actually felt more at peace than I had ever before. I only worried, feared, and cried over what my husband and children would go through if they lost their wife and mom. It was a strange mixture of emotions. Joey and I discussed things we would have never thought of if it weren't for thinking I could have cancer. It was a season of growing for Joey and I... and a chance to cultivate and fertilize our children's walk in faith as well. Life seemed to be in slow motion. Even thinking back to that time, it is foggy and slow in my memory.

On Thursday, May 10th, I saw my pulmonologist, Dr. M. She showed us the CT scans and explained what we were seeing. There were tons of small white spots covering my lung CT. She said they were "micro nodules" (basically tiny tumors) and they were throughout my lungs. If it were to be cancer, it would most likely be "too late" for treatment. We waited for her to tell us... did she think it could be cancer? It seemed like a long time to wait, but finally she said, "I don't think it's cancer... but let me put it this way: cancer is not at the top of my list of possibilities, but it's not at the bottom either." I breathed a huge sigh of relief. I didn't care what else it was, I just cared that cancer was not the first possible cause! Praise be to God! At this point, cancer was not ruled out... so the unknown still hung heavily in the air. Joey was more discouraged than me, I think... I felt pretty positive it was not cancer, but I knew I could be wrong. Dr. M wanted to do a bronchoscopy to take some tissue from my lungs to test (for cancer, but for other things as well). She also said her "gut feeling" was that I had Sarcoidosis, an autoimmune disease that usually shows up in the lungs first. She said I would have it the rest of my life, but usually with treatment, the symptoms would go away. Compared to cancer, this sounded just fine and dandy! So, we scheduled a bronch for Monday, May 14th.

I have never been put to sleep or had any type of surgeries or procedures before, so I was a little nervous about the bronchoscopy. We checked in at 8am. Finally a little after 10, they came to take me to do the procedure. I had to inhale some horrible tasting numbing stuff for a few minutes, which made me feel like I couldn't swallow and I kept inhaling my saliva and then choking on it. The last thing I remember is the nurse putting something into my IV. I woke up back in my room, with Joey talking to me. I think it was around 12noon. The rest of the day is a big blur... I know I was extremely nauseated and dizzy. I couldn't keep my eyes open. We came home and Joey carried me into the house and put me on the couch. I didn't wake up til my dad and Sue brought me some soup from Panera Bread (the first time I've had it and it was so yummy!) around 5 or so that evening. Even them being here is foggy. Dr. M gave us pics from inside my breathing tubes and the nodules were everywhere in them as well... because there were so many nodules, we felt a little more concerned about cancer again. Dr. M also was surprised to see the nodules everywhere. The next day my sisters Elisa, Marissa, and Marita came around 10am and stayed til about 3pm (?) and I was able to just hang out in my room with Cyrene.

Wednesday, May 16th, I talked to Dr. M (pulmonologist) and she said that she could for sure say that I do not have cancer! Thanks be to God! I was so full of thanksgiving... it was so wonderful to know, that for now, I would be here with my husband and children... and especially for their sakes, I was glad! Dr. M said she felt confident in saying I have Sarcoidosis. She said she wanted me to start treatment using the pill form of Prednisone (a steroid). My follow up appointment with her is June 5th. There is no FDA approved treatment for Sarcoid, but steroids are what is usually prescribed if the doctor feels treatment is necessary. The side effects of Prednisone are terrible. Dr. M said she wants to go over all of the side effects and discuss in deeper detail the treatment, etc. before prescribing the steroids.

Yesterday, May 22nd, I saw a nutritionist. He feels I can treat Sarcoidosis and get rid of my symptoms completely over the next 6 months, naturally... with vitamins, supplements, and a healthy diet. He started me on an Iodine supplement, something called "matrix" that helps all of the organs, and also a liquid multi vitamin. I tested extremely low on Iodine, so he feels that is contributing to my lack of energy and overall exhaustion. I am going back on June 12th to discuss any changes that should be made in my eating habits, etc. I would really like to treat Sarcoidosis naturally, without all of the yucky side effects. Being that it's an autoimmune disease, which has no cure, treating it in whichever way makes the symptoms go away (and stay away) is our best option. The only downfall to natural treatment, is that insurance does not cover it... so $$ is a huge factor in deciding where to go from here. For now, I was able to buy one months worth of the iodine, matrix, and multi-vit. So, I guess we'll just take it one day/month at a time.

So... that's where I'm at... living with Sarcoidosis. Prayers are deeply appreciated! I have been so extremely blessed with sisters cleaning my house, caring for my children, and for them and others who have been bringing my family meals. It has been a tremendous help, since I am exhausted (literally can barely keep my eyes open by the afternoon most days, and just feel generally tired all of the time) and can not do any housework without becoming short of breath and having physical pain in my chest (simply loading clothes into the washer or into the dryer is too much activity!)... I pray someday I am able to repay all who have helped me and my family... not just now, but in the years since Abigail was born as well! God bless you all!

It's not about ME

I've heard many times "God will not give you more than you can bear"... I know they say it meaning well, but it's simply not true. God has given me much more than I can bear.

"You are so strong"

I am much too weak to face another trial, another day of grief, another day of heartache.

"God knew you could handle this"

I am no different than anyone else. God didn't take my son because I could deal with it better than the next person. He didn't allow Abigail to have mito because I could handle it better than you.

He has been our strength when these things happened. And, if they happened to you, He would be your strength as well. Just as He already has for the trials you have faced!

I have been broken and my pieces are not put back together perfectly... in fact, there seems to be some pieces missing. I am tired. I am weary. I will live the rest of my life aching to hold my Elijah. I will always wonder why Abigail has to suffer and someday my arms will ache for her as well. I will always miss my mom. I will still shed tears, have days where I don't want to face another day, hide my pain with a forced smile.

This is simply my life and I have no choice... but to keep breathing.

Any good, and I repeat any good, that has come out of my life is all Him. It's not about me. I am not strong. I am not able to survive another moment without Him.

Please do not misquote the following verse.

"There hath no temptation taken you but such as is common to man: but God is faithful, who will not suffer you to be tempted above that ye are able; but will with the temptation also make a way to escape, that ye may be able to bear it." 1 Corinthians 10:13

Please do remind me of this verse.

"I can do all things through Christ which strengtheneth me." Philippians 4:13

Why I Avoid Immunizations

Random occurrences

• Diseases specifically from deletions of large parts of the mitochondrial DNA molecule are usually sporadic without affecting other family member
• Medicines or other toxic substances can trigger mitochondrial disease

(MitoAction)

MitoAction, UMDF, and other mito websites state that a Mitochondrial Disease can be random or sporadic, meaning not inherited. As stated above, medicines or other toxic substances can trigger mitochondrial disease. Wouldn't that include immunizations?

Abigail was involved with a genome sequencing study, where she had all common/known genes associated with mito tested. Joey & I also had the same testing. All tests came back normal, showing no genetic cause for Abigail's diagnosis. Although there is a very slim chance that Abigail's disease was inherited through some unknown/uncommon genes, the chances are much higher that her diagnosis is random/sporadic. Without 100% proof that the immunizations she received as an infant are not responsible for all of her pain and suffering, I will not put my other children at risk. Would you??

P.S. My 3 children born at home with the least intervention and who have not received any of their shots, are by far my healthiest children ever! Josiah (our oldest child) was sick from infancy with double ear infections, wheezing/asthma, chronic vomiting, etc. and suffers from severe dairy allergy. I'm sorry, but for me... the proof is in the pudding!