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If Not, He Is Still Good

Here’s my reality and thought process, friends. What you see with this post is not me not being positive-and frankly I’m not always being positive when you think I am. This is not me believing I will not be healed-because I know I could be and that would be awesome. This is not me in any sort of denial, because frankly, these last few weeks have not left me any room for denial for any possible outcome, any possible plan. I have a large tumor pressing on my brain stem, traveling through my vestibular nerve, and I’ve actually been feeling it change and grow. No room for denial. It’s there. It’s changing. It’s causing issues. I hear my hearing in that ear “disappearing” along with all the “ring tone changes” that are 24/7. There is no room for denial for anything. Some changes within my “head” are swifter than my body can respond.

In fact, some others think I’m “over preparing.” or worry I’m overdoing it. That’s ok. I have a family to take care of. I’m still a wife and a mom, a business owner, a homeschooler, and even more so a Christ follower. Preparing for what I cannot deny.

What I’m really trying to get to, and what this really means for me is this: Sometimes MY desired outcome, my hope, my plan, is not the BEST God has for me. I want His best, even if it’s hard! Preparing for hard is easier for me than the denial that my ways are not His ways.

What I’m really doing is preparing my heart to praise Him no matter what. I want to praise Him in great miraculous healing with hearing loss being the ONLY undesired outcome. I want to praise Him in hard probability outcomes, possible radiation treatments, or a year long recovery, or even a needed home remodel and wheelchair ramp. I want to praise Him in a now lifetime of monitoring cells that could grow back any time in the rest of my life. I want to be able to praise Him if this ends up being a very hard fight to get back to health because of things that can happen during surgery from living in our sin fallen world. I don’t live in the negative what if’s scary stuff. But they do need acknowledgement and consideration. Preparing both to praise now and to praise Him in my future-regardless. Sometimes I’m scared I won’t be able to do that. So I’m preparing. Now.

My end goal, no matter what: Will I acknowledge God and His goodness, even if the outcomes are not my desire for me and my family? Preparing.

I want to say YES. Yes I will. I’m preparing to and determined that I will give Him all deserved GLORY for all possible outcomes, and to be able to say “It’s ok. If not, He IS still GOOD.

He is STILL good in DETOURS and life’s rock slides. Preparing to see the GOOD now, and then.

If not-He IS still GOOD.

Blessings, 
Deb

My Version of “Mindfulness”

Early in September the doctors I was turning to for help were sort of treating my condition as though I needed a mental health evaluation, and that I was “just” having panic attacks and anxiety. I had a full body case of unexplainable hives, people, and real physical symptoms. They were doing testing very slowly and acting as though my anxiety was an overreaction. Honestly, out of desperation for help, sometimes it probably did look that way! May I remind everyone that I’d not seen a doctor is 10 years? I obviously have managed my mental and physical health quite well until I knew I couldn’t any more. I was turning to them for HELP and feeling frustrated.
Anyway, it was suggested that I practice “mindfulness.” and go to my “happy places” and imagine myself on a dream vacation and tell myself bedtime stories, to document for my triggers for when anxiety happened. Some “triggers” were when I had that awful cold in September and felt I couldn’t breathe. That’s when I began noticing my “triggers” were that I often could not feel the back of my throat and was choking on saliva. Or I couldn’t feel the lining of the right side of my nose. Or that I’m burning the lining on the right side of my mouth on food, but what? How? Now I know I can’t feel the lining of the inside of the right side of my mouth, for instance, because of the pressure from inflammation of the tumor on my facial nerves. It’s like a permanent state of having a hefty dose of dental novacaine on the entire right side of my face. Or that I was unable to regulate my body temperature and was always way over heated which made shortness of breath worse.
More than once, I was sitting bolt up in bed from a rare sound sleep-think I was only sleeping about an hour or two at a time. That was my trigger. Sleeping. One time I was listening to my pastor’s previous week’s sermon. I was relaxed and suddenly short of breath and in a spin. No warning. No reason. No ability to take a deep breath.
Anyway….I threw the mindfulness apps to the wind b/c they actually frightened me more than they were helping. They made me feel like I was being ignored. I bought the white noise machine that was suggested to help with sleep. I turned everything toward “how do I gain peace.” It’s hard for me to read more than a few minutes. It’s been a struggle to read even a post on FB. It’s a struggle to read a devotion. Listening is a struggle because of the vibration in my ear and head. Sometimes my head feels like it’s been shaken loose just from sound.
And then the bad dreams started. The frightening, these are obviously not from God, and obviously there is an evil piece of warfare going on in my head, my mind, my brain kind of dreams. Ones that I don’t want happening because they strike the deepest fear at the very heart. And note? They are when no one is around. I’m alone. My family is sleeping. It’s dark.
All the “positivity” you see is me combatting that very reality in my life. Interestingly, God has never let me see anything except what I needed for any given moment. I see the verses exactly for the spot I’m in. I see the inspirational devotions by authors at 3 am when I’ve been shaken awake that speak exactly to what has been shaken in my soul and brain.
So now that I’ve set a stage, permit me go back to the suggested mindfulness apps…and bedtime stories that I actually found offensive and ridiculous. Here is what I found instead. I have had this series of music on nearly non stop, sometimes even at night. If I wake up, I see snippets of verses and hymns set to the music. I have no idea who this guy is. I only know that his music is calming my brain when it’s feeling shaken. It’s feeding my heart and my mind and my soul when I feel weak both physically and emotionally. I’ve not had a moment of “mental health anxiety” since I started doing this “method.” I’ve had no more moments of “I can’t breathe.” or overheating body temperature since an actual diagnosis! I have normal periods of grief, coping, laughter which I doubt is the same as “practice your deep breathing” behavior modification techniques the medical people wanted me to use before I had a real diagnosis for real potentially life threatening physical issue. And I’m having fewer scary dreams since the diagnosis.
So if this helps anyone who is worried about the idea of mindfulness in a spiritual realm that is not from God, as I was and did not want to entertain, maybe this link on YouTube will help you too. I’ve been able to listen to other things as well, but these are the calming videos. I have them ready for the hospital recovery.

Blessings,

Deb

PS. I am not minimizing mental health issues, and needing this sort of therapy. I know that this a serious issue. It just wasn’t appropriate for me or my faith walk. If this is not where you are, please do listen to your own professionals!
PPS. Over the last 10 years of our knowing about True Vine Equestrian Center and Jonathan working and training out there, and our sometimes volunteering or supporting, and now Anna taking lessons, we have appreciated a peace that God has surrounded around that facility. As I left lessons with Anna just a few weeks ago, this was the sunset over the grape fields directly across the street. I appreciated the “look up and see the peace” then….and I appreciate it today.

Visit with Brain Neurosurgeon

First, thank you all for your prayers today. With Anna sick and other household things happening concurrently with today’s appointment, I was struggling to be positive this morning. Many prayers availed much peace, and I thank you for that.

I shook as I walked into the neurosurgeon office at Bronson. I truly have never felt more physically weak than I have the last 24 hours. I met with a steady stream of medical people before I got to meet Dr. Fabi. I was warned by the staff to NOT tell him I’ve been calling him Dr Fabi-lous in my head as I waited for this appointment. They told me they work really hard to keep him humble.

What they all did tell me is that he is a loved doctor, not just be patients, but by his staff. That he is a “good man” with a deep desire to improve the lives of others, and to be assured that being in his care and his hands and waiting for his guidance in how to proceed should be peace giving. The nurse practitioner I talked to just before Dr. Fabi told me that our faith was going to take us far, and that they wanted me relying on it. She also told me that Dr. Fabi is a man who wouldn’t be offended knowing he was prayed for. So please do pray for this man and his family! I knew I was off to a good start.

Dr. Fabi came in. He smiled, he was compassionate, he was kind. He answered every single question without a moment of rushing us. He laughed with us, and enjoyed our (sick) humor. He showed me my brain-and I do have a very normal looking one! YAHOO! Except for the golf ball between my cochlear (ear) area and the vestibular area near my brain stem. He respected that I had a nursing background but that I myself am feeling like a patient and talked to me as such.

Nothing about my condition has changed. It all remains as it did last week. I have a golf ball sized tumor, considered very large for this type of tumor, still likely benign and arising out of Schwann cells, and it has been slowly growing there quite a long time-probably a few years. It is necrosing and there is absolutely no other option but to have removal surgery ASAP. He told me that he wanted my surgery to be his only task for the day it is scheduled, that it is delicate, that it requires slow patience and steady hands, and he wants to be completely prepared for it himself. He told me that the probabilities of outcomes remain the same, EXCEPT he is skilled and wants to preserve all function that he can for me. Much depends on how much of the nerves are directly impacted by the tumor, not just the inflammation. He will likely have to leave a small number of cells in order to preserve some of my nerve functions, and I will be followed with brain MRI’s for most of my life. There is a chance it could return. But at that point I would be managed with radiation surgeries rather than this brain surgery.

One of the realities is that by my surgery date, November 29th, I will likely have ALREADY lost all of my hearing in my right ear. There is absolutely nothing that can be done to stop or save that, and there will be things to overcome related to hearing loss. BUT, he believes that at least within 6-12 months, I will have regained most of my other function back with some of those probabilities still possible problems. He just promises to do what he can to minimize them. After surgery I will be in recovery, and then spend a day or two in the neuro ICU at Bronson. I will be on a post surgery floor for a day or two after that before being discharged to home. I will do PT in the hospital and go back to Core Balance to get my strength and gait training back.

I continue to be called a picture of health. This *thing* is a blip. Nothing I did or anyone did caused this. It’s not genetic. This isn’t something my children have to consider for themselves. All parental units and offspring parties in my life are absolved of all responsibility. This is not from stress, or anxiety, or from having a bunch ‘o children, or from working and homeschooling, it’s not from using cleaners, not from plastics that store my food, and it’s not from lifestyle choices or behaviors or lack of exercise or poor food choices. In fact, all of those things or choices that I’ve already made in order to be healthy has made me a person of physical strength and by all accounts, I will heal well as a result.

I left Dr Fabi’s office really without new information, but what I did leave with is a peace that we are making the right decisions for this situation. I don’t like that I have to do this at all, but I now have a plan, and I feel like I can manage it. I will continue to be managed with medication until surgery day. Obviously, any other changes will require reporting to the ER.

I have more time at home to prepare the family. I can keep doing my regular activities of daily living as I’m able and with assistance. I’m now the proud owner of a handicap parking sticker. I will do normal surgery preparation testing. I can enjoy Thanksgiving with family and I won’t even volunteer to help prepare a single thing. 😉 I can work some of my business online as I’m able. The two shows Lydia and Peter were planning to cover for me can go without a hitch. I can homeschool from the couch. My boys can go to Haiti without worrying that I am not doing well at the hospital. Peter can finish most of the semester or at least make arrangements for his classes.

Tonight I’m going to rest. Thank you for continued prayers!